I tell you the internet has helped me more than any doctor. My symptoms were so mild. I had small mild rashes, didn’t think much. Then there was the fatigue, then mental health issues, then random swelling, then chronic pain, then neuropathy. All my problems were blamed on my mental health. It wasn’t until I got some random genetic testing that it was found. I spent most of my 20’s so sick. I was using a cane. I had no stomach issues other than the occasional heartburn or constipation. I had no idea.
Oh great! That makes me so happy!!! It took my body several years to recover as well. I'm still not 100%, but I am probably as close to it as I'll ever get... I've come to terms with it however. Just glad I'm not suffering anymore: ) Glad you're feeling better
I was diagnosed with celiac disease when I was 46. I was fighting for an answer since I was a teenager. Every time I talked to a Dr about the pain I was having I was told that pain in normal after eating, and it's in my head.
Wow, that brings back horrible memories. I’m so sorry you had to experience this. I feel like they would rather sell their soul than admit that they simply don’t have an answer. I read this is actually reported often by celiac patients- people trying to convince them that their symptoms are all in their head.
Ohh 😯 God...I really feel so bad but great you atleast got the diagnosis...my daughter also received such comments that she is getting mentally sick n she needs counseling or therapy...over reacting but I constantly say that I know my daughter...😢
@@NaturallyKarli a year later and I’m now seeing your reply.. I didn’t even see it in the notifications. I had a dr once whose famous answer was I don’t know. For everything. So I stopped going to see her and just went to walk in clinics. Seems to me that is where I can get answers. It was a walk in clinic dr who asked me if I had ever been tested for celiac disease. I had gone in to see if a dr could order iron tests for me because I could feel that I was low again. My dr at the time was tired of me coming in twice a year asking for the tests. I’ve been anemic for as long as I can remember. That walk in clinic dr said there had to be a reason as to why my iron is always so low. So she ordered me the test and it came back positive.
@@madihaghazanfar5093 are you suspecting celiac disease with her? Drs just want to push those pills and diagnosing mental illnesses when really our body is lacking vital minerals and vitamins. They play a very very important role in how our body and brain functions! There are a couple minerals that if we are lacking can cause anxiety and such.
Me too, thanks for the internet. After bread, biscuits, wheat products my buttocks filled with very itchy rashes since teen.After 50 pass blood and was suspicious of bowel cancer or ulcer.With gluten free diet my belly has disappeared, now three months most symptoms have disappeared.
I diagnosed myself as gluten intolerant a year and a half ago. I’m now 68 years old. I complained for decades but was never listened to. First, I’m overweight and have lost 30 lbs since I took out gluten. My skin issues started at 11 years old. Then, my mouth had ulcers all the time while my teeth are dark. The teeth, even baby teeth, also shatter, flake off in layers, or rot from the inside out. I never had a good cleaning without being told to floss because the gums kept bleeding (inflammation), but I floss religiously. I had migraines as well. I have also come to discover that my parents probably had this problem, too: my mother had weight and teeth issues while my father had the skin problems. My niece is also gluten intolerant. This argues for genetics but not the root cause.
I’m so sorry to hear you have suffered from this unknowingly for so long. I have also experienced dental problems. This has bee shown to occur with some people with celiac
Headache Sinus symptoms Joint pain Rashes Stomach bloating rumbling pain Numbness tingling burning sensation in arms and feet Anxiety and depression This as been going on for 2 years now Trying gluten free now
I am happy and feel finally relieved that after 20 years of feeling crazy because I did not “feel right” and was hospitalized twice for crazy blood sugar (clocked 40), not diabetic, not thyroid. A team could not figure it out. 2 years ago I started getting a redness on my face that turned into blisters that just kept getting worse. Doc I have now is an AMAZING person:) She figured it out in 10 minutes today:) I had such beautiful skin, she saw my face and immediately figured things out. 20 years of thinking I was a hypochondriac…
Wow! I’m so glad you finally got a proper diagnosis. The blisters aren’t as bad when you finally obtain a name for them and the reason why they occur. People thought I was making it all up for years. Why would anyone want to pretend to be in agony for years on end?! Thanks for sharing your experience ❤️🩹
Started with headaches, then a weird sensation in lower chest/upper gut, and chest discomfort, bloating and constipation. Head CT normal and 2 EKGs normal. Then MD ordered endoscopy which was suspicious for celiac and blood work confirmed. I have been gluten-free since August and this week is the second time I've had symptoms pre-diagnosis. Been careful as i can be, so not sure whats up, but so over it. Thanka for informative video!
I have had celiac disease for years now. I have the DH as well. The rash and blisters are awful. Suffered with migraines, joint paint, muscle aches, imbalance and difficulty concentrating. I was swollen and overweight and miserable. I was on a strict GF diet, however, kept having setbacks every month or two. I knew there had to be an issue. I did more research on my own. Gluten is ONE TYPE of LECTIN. There are many types of lectins. So, I decided to go on Dr. Steven Gundry's diet (the plant paradox). You can look up his Yes and No list of what is safe and not safe to eat. Within 3 weeks, migraines were gone, my balance came back, rash gone, joint pain and muscle aches improved. This diet is not easy but 2 years later I am 30 lbs. lighter, no longer swollen and my quality of life is better. So, my point is, watch out for certain LECTINS...not just gluten.
I'm glad you're feeling better. Lectins, like the ones in beans for instance, have actually been a driving force in my recovery from gluten-related injury. But it's great to find something that works for you, specifically.
In my late 20s I developed the most uncontrollably itchy, painful, and blistery rash on my elbows, knees, lower back, and jawline. At first I thought maybe it was poison ivy, but after a few months I decided to see a dermatologist. She immediately diagnosed me with DH and I've been gluten free for 6 years. I'm glad you finally got your diagnosis!
@@NaturallyKarli it took a couple of months to clear up, but a strong steroid cream helped with the itching and the blisters. I now refer to them as my "gluten bumps" if they ever show up by accident.
Your video popped up for me since I’ve been trying to navigate through this new diagnosis of celiac disease. Thanks for sharing! I was suffering for quite awhile and to hear your ears would get really inflamed and your neck would hurt so terribly (two pretty odd symptoms which my dr didn’t think was related to the gluten) was so validating!! I also have dermatitis herpetiformis. Well I did before I started being gluten free. All of those nasty symptoms went away. I swear I wish all drs would watch you tube to get up to date and these kinds of things. I feel like having this is like being in menopause (which I’m in now) because drs know just as little about this as they know about that lol. It shouldn’t be this way. Anyway thanks again for sharing your story. 😊
Thanks Karlie. I have psoriasis, bloating, brain fog, sort joints since 2005 especially bloating. You are a God send. Bless you even though I am not religious. John J Downunder :)
Wow… thank you for this video. We had the same exact symptoms. 1. I was convinced I had bed bugs because there was no way I would have a rash this long (7 years later it’s still here). Obviously there was no bed bugs. I gave away my perfect Casper for a Purple mattress and it was way too firm, this led to shoulder and chest issues. Sold it and went back to Casper. 2. Look at the time, money, stress, and energy wasted all because of a rash. The mental toll it took on me was nuts (and that’s without just everyday life issues). 100% led to depression. 3. The migraines… Even when I explain them to people I felt like I was being dramatic. But no, those migraines are horrendous. I wouldn’t want to wish it on anyone. To the point where my peripheral vision goes dark to seeing the words I’m reading literally start swirling. And that’s not even the worst part - those are just side effects - after a moment of calm, the worst migraine comes… it has happened to me twice. This first one led me to completely stop drinking cold turkey and the second made me really look into avoiding gluten all together. Hearing your story gave me the little bit of validation I needed that I’m not making this up - time to get serious. Also wished I took it more serious a few years ago instead of just going deeper into what was causing harm. If ur reading this and this sounds like you: STOP CONSUMING GLUTEN (start slow - it wont be easy).
My symptoms prior to celiac diagnosis started with a pin a needle like feeling in the soles of my feet and palms of my hands and really extreme brain fog. So bad it was affecting my reasoning and emotions..I don't recall much of 2011, 2012 & 2013 leading up to diagnosis in 2013. Being that celiac is autoimmune, it affects or creates tons of other issues..
I have widespread pain, extreme fatigue and migraines. I finally was just diagnosed after a few years of "getting by" with this pain. My neck is the worst. I'm just so glad I finally know what's wrong. 🙏🥳☺️
Did your neck hurt so much that you have to turn your whole body to look around? I get that sometimes out of nowhere and will last a few days. Slowly comes on and slowly leaves randomly.
Thank you for this video so eye opening same symptoms for years not knowing why until recently. Now understanding the headaches,inflammation, fatigue, fingers splitting was due to a wheat allergy I had. Thank you for this video . On a journey to heal my body now becoming wheat free.
Thank you for this. I was plant based for a long time and my stomach has been bothering me for so long. I couldn’t figure out how I was plant based and still bloated and had bad bowl issues. I have had a rash like what you describe and the only thing that stops the itching was to sit under burning hot water to relieve the itch. They thought that I had rheumatoid arthritis my joints hurt so badly. I had mouth sores.. it was the worst. Cutting down on sugar and getting rid of gluten made an astonishing difference. I’m nervous to eat it again to get diagnosed.
Thank you so much for making this video. Im currently struggling with this same issue and hearing someone else say their condition is now “tolerable” brings me hope. I really needed this. Again, thank you friend.
You are so welcome! Glad you found it reassuring. I'm so sorry for what you are experiencing but it will pass! As long as you take good care of yourself
Joint pain!!! Sleep disruption qaking up in middle of night Major anxiety I figured one thing reason out but i still am jnsure what else caused this strong reaction. Memory yes! My ear left was red like ur finger. Ive been on a gf diet. I had swollen lymph nodes has anyone else had this.
I have been watching peoples testimony on gluten and it’s hard to think that I have gluten problems because mine just don’t match theirs. Untell your video, mine matches every single one of yours my neck hurts all the time I have that rash, migraines. I don’t have major stomach problems only problem I have is bloating as far as stomach. This is Day two of gluten-free for me listening to you I will never eat it again. I have been strict vegan for years with very low salt and that helped the migraines be less, but I still had a low-grade headache everyday and pretty high neck pain every day I I’ve never tried cutting out gluten for longer than a week. Thank you so much I just could not convince myself I really had issues with gluten. until I heard all your symptoms and what you had to say. I really appreciate you taking the time to talk about the uncommon symptoms thank you again.
Awe I’m so glad you found this helpful! Give it at least a few months and you’ll realize how easy being gluten-free can really be. Hope you feel better ❤️🩹
I just got diagnosed with celiac about 8 months ago. I still don’t feel 100% but definitely have seen lots of improvements. How long did it take everyone to feel better? I have probly had it for years without knowing it - I had very “seemingly” non-related vague symptoms (excruciating periods to the point I almost pursued surgery to rule out endometriosis, migraines, extremely low ferritin, chronic constipation, etc). Never had crazy stomach pain or anything like that…fast forward, my period pain has been cut in half and I gained 20 pounds a few months into GF diet because I had been so underweight from not absorbing nutrients. It’s been a wild ride. I now struggle most with the mental part of it and especially social anxiety because so much of relationships revolve around food which you don’t think about until you can no longer eat what everyone else does…does anyone else struggle with the social part? What helps? And again, how long before you feel like a normal human again physically and mentally?
Hi Carolanne, it took me at least 6-7 years on a GF plant-based diet before I started feeling like myself again. This varies for everyone, though. And yes- the social aspect was really difficult in the beginning. But after almost 13 years, eating different foods from my friends and fam doesn't bother me anymore. The more you do it the more it becomes your new norm. Good luck with your healing journey
It started with acid reflux/indigestion then selling and hives. I tested positive for celiac in my bloodwork. Stopped eating gluten and went away fast. It was even affecting my mental state/depression. I would get itchy swollen fingers, hands, ears and lips
Thank you very much for making this video. I am a 43 year old woman who has slowly been killing myself with gluten all my life and, l didn’t realize it until about 4 months ago. All of my symptoms were like yours: 1:) Focus- I could not focus to save my soul, to the point where I begged my doctor to give me a.d.d medicine so I wouldn’t get fired at work. I was forgetful, lazy, tired all the time, and had no motivation. 2 months after going gluten/ grain free I went from the worst employee to one of top performing employees- no more medicine, mental fog was gone, I had energy, happy, and could finally focus. 2.) Headaches/ Migraines: I was having to take Advil almost every day just to get through the day. I cringe now knowing what I’ve done to my body with that. 3.) Joint pain and muscle stiffness: I had the exact same issues with my neck and had to stretch it from side to side countless times per day. Once I got into my late 30’s I also developed debilitating lower back problems that were severe enough that I would throw my back out at least once per year and be in bed for a week each time. I felt like a 90 year old woman in a 30/40 year old body. Now I am pain free!!! I feel 20 again! So much energy! So happy! I can do all the physical things I had given up on ever doing again. It’s amazing!!! 4.) Weight gain- What led me on the path to discovering that I had Celiac Disease was a friend of mine suggested I have blood work done to see if I had thyroid issues because of my weight gain. I did and sure enough I had hypothyroidism. I went to see a specialist and she did a sonogram of my thyroid and said it was pretty much dead and I would need to be on medicine the rest of my life :( Wondering what could have caused this, I started down the rabbit trail and discovered Celiac Disease is linked to thyroid issues. I’m guessing the constant autoimmune response from the gluten slowly killed it. That’s when I made the decision to go gluten/grain free and BAM that’s when everything changed. 5.) Skin issues: this is the one thing that has actually gotten worse after going GF. I think my body has finally got a chance to heal now and become normal, and even a small amount of gluten will now throw me into a full itchy breakout. For some reason it always starts on my right inner forearm - a silver dollar size rash, then spreads. I feel like it’s my body saying ‘Oh heck no!!! We’re not going back!’ And guess what- the fear of that breakout sometimes keeps me in line when I’m tempted to have even a tiny bite of something I can’t have. 6.) TMI stuff: the other issues I had was gas, constantly feeling bloated, and had diarrhea . I would literally fart 40+ times/ day. And not a little toot either. I also went #2 3-5 times per day. Since going GF I no longer have any of these issues. 7.) Hot ALL the time: I kept my a/c at 66 degrees. I was hot all… the …time! I blamed it on my weight gain, but after being gf for a month I started to notice I was actually starting to get cold at that temp. Now I am able to keep the temp between 70-72 and be comfortable. My theory is that the autoimmune response kept me inflamed all the time, and inflammation puts off heat. Whatever the case- I’m glad I no longer battle that. The Paleo diet has really helped me. I now eat for nutrients instead of trying to cut calories. Much love to anyone suffering from this.
I resonate with your words so much. Especially feeling like a 90 year old woman in a young body, having to take Excedrine multiple times per day to combat migraines, and having zero motivation/energy to this day when I accidentally eat gluten. My brain fog and hand swelling/inflammation has begun to raise its ugly head again even to this day. Ugh it truly is a lifelong struggle! Hang in there and thanks for sharing ☺️
Hi I’m a guy who has severe muscle stiffness and pain all over my body as a result of lifting heavy in the gym however I am a celiac and I wasn’t following the diet at the time due to being an arrogant know it all (I was young) how long did it take for your muscular symptoms to resolve
@@moeali7368 It was probably about 3 days of entirely clean eating (for me that means no grains whatsoever and no artificial crap) before I felt a big difference. I guess the junk was still in my system for a bit. After a week I had a massive energy boost, people were asking me why I was in such a great mood, and I felt on top of the world. Have you ever seen the movie Limitless? I swear the change felt like that. I was a new person. Hope this works for you too. The stiffness should go away little by little over the first few days- hang in there. Good luck- you CAN do this!
Thank you! My daughter is 40 and it took almost 10 years for diagnosis. Your symptoms are very similar to hers. The blisters on her face were awful. Social activities were none. It's so sad to go through this and to watch it. She is totally gf now. We as a family are very careful and aware around food. People don't realize the impact of cross contamination, even a bread crumb!! She had all of your symptoms and more, vomiting too. It's sad there is no other medical help for people with celiac. My heart breaks.
Tonight you are helping me in a huge way. I have had tbese blusters all over my face along the nerve path for 4 months. 3 Drs have no idea what so ever is causing it. Im a retired EMT and research my symptoms which has led me to Celiac disease evidently of the skin. I ate two biscuts 3 days ago and the pain is unreal. Today I learned that if you have gut issues finding a Dr trained in FUNCTIONAL MEDICINE is how to get REAL HELP. AND if you have Northern European DNA you are likely to get it. Thank you THANK YOU! From the bottom of my heart. ❤I know you will play a part in me regaining my health. ❤
You are so welcome! I’m glad you found some answers and I’m sorry you are dealing with potential DH symptoms. This is an unbelievably uncomfortable disorder. Take care!
@@NaturallyKarli Thank you. Its very lonely, I have been hiding at home for months til my mom convinced me to come for a visit. The first person who saw me without my mask adked me "Is it Mersa?" As he takes 2 steps back. I am in excruciating pain today, and about out of hope. Dr appt tomorrow, fingers crossed, but tomorrow feels forever away. Ive had it my whole life I think, its just never reared it ugly head like this, just one blister under my earlobe from time to time. And I never understood why my hands would get hot and red after dinner sometimes.. i thought it was too much salt in my meal. After hearing your story I had a couple AH HA! Moments. Also severe right knee pain out of no where, I thought, did I tear something? Looking at knee braces 2 days ago. Thank you for everything. You give me and others like me, hope. Something Im almost out of today. Because Im also experiencing severe Celiac symptoms. Last gluten 4 days ago. And believe me its the LAST!!! Good lord, the pain is debilitating. Im fasting now because to eat means to suffer. 🥵😪.
@@NaturallyKarli optic nerve atrophy (cannot be reversed) can be with any systemic inflammation, but CD also causes nutritional deficits, which are yet another way the optic nerve can be damaged 💗 better safe than sorry
A few questions. 1. How long did it take before you noticed the fog lift after you stopped gluten? 2. Did the brain fog make it difficult to pay attention to the road while driving? 3. Did you have dreams when you were eating gluten? 4. Did your sleep imorove? I ask because these are all things I am struggling with.
Hi Charlie, I'm so glad you reached out & I am sincerely sorry you are dealing with these issues. The "fog" is still present on days when I did not sleep well or I am overly stressed. But it took about 6 years to be honest. I had to remove all the processed and animal foods from my diet before noticing any cognitive improvement. Yes! Very difficult to drive even now in the later end of each day. #3. is hilarious, but yeah. Sometimes I would eat bread then wake up in a panic. It happens much less these days. #4. I still struggle with my sleep regularly, but it's no where near as bad as it used to be. The better I take care of myself, the better my body cooperates with me. Good luck with your situation and take care of yourself!
Thank you! It was quite the journey. I'm actually grateful that I have to be more cognizant of my lifestyle choices due to this illness. It helps to keep me in check lol; )
I have the skin blisters that left permanent circular scars all over and on face. Started at age 9. Got diagnosed last year at age 42. Skin biopsy and bloodwork confirmed. Then got diagnosed with drusen in my eyes from this condition. Thank you for sharing. These are the rare side effects of celiac.
I'm glad to hear you finally have an explanation for your health condition. DH is very difficult to diagnose, but easy to manage once you have removed all the gluten and other troublesome foods from your diet. Take care!
@@NaturallyKarli: Not really, I became aware of something was wrong with my stomach over 10 years ago and my doctor put me on B12 injections, but didn't look any further. Then in 2022 things got really bad, and that's when he sent me for a lot of tests an eventually a biopsy, that confirmed celiacs. So now I have a dietician instead of a doctor. But she's really good. Thanks for your video.
Wow, I'm sorry you had to experience that for so long. But it certainly is a relief having a name for what is going on with our bodies (celiac)! I'm also thankful that the illness is manageable with due diligence.
I was diagnosed with Celiac several years ago. I have had bad eczema and skin issues since I was a baby, but my real problems started when I was about 13. I would get horrible, debilitating stomach aches. All I could do was lay curled up in a ball and wait for the pain to stop. I was throwing up all the time. I had terrible neck pain, severe TMJ, and other joint pains. I also had bad acne. I experienced everything you mentioned. Finally my doctor decided to do a blood test, and lo and behold, Celiac. I still have what I consider to be Celiac flares (although I am 100% gluten free) I will still get stomach aches, skin itches, and I still have joint issues. But for the most part I am doing good, thank God! It is really helpful to know that someone else has experienced the same things that I did!
Hi Melina, my heart goes out to you. Thanks so much for sharing. I too continue to suffer with similar ailments even though I'm very diligent about the GF lifestyle. But I am very grateful I am not nearly as sick as I was when this all began years back. There is thankfully a silver lining with this condition- we control most of it! Take care 💜
@NaturallyKarli thank you so much for your response! I completely agree, I am very thankful that with proper diet we can feel as good as we do! As I said before, it is so helpful to me to know that you too still have some issues related to Celiac even though you are GF. We have to keep doing our best every day!
I was careful to avoid gluten for a month, then I got a loaf of sourdough bread from a bakery, the next day I had a lot of the same symptoms you mentioned. I found it to be very debilitating. I was pretty worried what was wrong with me, but after watching this I'm now pretty confident it was just the gluten and not something worse
@@NaturallyKarli I don't have a doctor that's why I'm pretty into the whole "let thy food be thy medicine" thing like Hippocrates said. But I also have training and science and sometimes I have ordered some blood test for myself off some websites. But when I really look into it there is very solid evidence that the problem is not even just the gluten it's really glyphosate that ends up causing a really bad reaction to gluten and possibly the glyphosate gets taken up into the gluten protein structure as a replacement for glycine. Dr. Stephanie Seneff has done some really good work on this.
Dr. Zach Bush is another great researcher that shares the same philosophy. But I was simply suggesting to start with the standard celiac panel for getting a clearer picture on your antibody levels. Private labels will certainly take care of this. Good luck!
It took 5yrs for the medical field to dx me and I’ve been gf 3 yrs now. I feel better but not healed yet. New to your channel and will check out your other videos for your journey. Thanks for sharing ❤️
You are so welcome! I always hoped to connect with other individuals going through similar circumstances when I was in the middle of those initial painful years. I'm so glad you were able to finally receive a proper diagnosis. It was my hope that doctors would have become more attuned to these sporadic signs and symptoms within the past decade. Thanks for commenting!
I self diagnosed might be powerful enough to make you. “Stove HOT.” Or I’m just powerful.’ Let me chill I am talking as of the DH is past tense. I could be hoping and still have 2 weeks to go. Plus hives don’t like emotions or hair or a 1 mile and hour breeze.
Awaiting blood test for celiac. My main symptoms are mouth ulcers/ gum sores that last weeks and weeks. I was diagnosed hypothyroid ten years ago after a virus This is autoimmune which can increase chance of other ones ie celiac. So I will see what blood test brings.
You’re right about acquiring additional autoimmune diseases- that’s why I’m so diligent with my diet and lifestyle choices. Hopefully your blood work comes back normal 🤞
I have the delightful combination of abdominal discomfort and all related symptoms, all the skin related issues, and my poor, poor neck and all the cognitive issues you listed above and depression and anxiety. So I had no clue these were all caused by the same thing and no doctor would help me. All they ever said was to lose weight and my body would fix itself. I suffered from all these in varying degrees since my early 20's and it wasn't until I was 34 (36 now) that my dad realised he has celiac and he told me the symptoms and I was like, hey, wait a minute... The recovery part is also so terrible honestly. I think more people should talk about how difficult it is to avoid accidental gluten ingestion because it's everywhere and how easily your body relapses and every single symptom comes back with a vengeance. I have recovered a lot, but there's still so much to go. I just stopped having anemia lmao Of course, because I'm off gluten, no doctor gives me an official diagnosis. Considering how bad it gets if I accidentally eat even a miniscule amount of gluten, I refuse to eat it just to get tested. Everyone just tells me that it's in my head. In any case, I'm very grateful to see the experience of someone who has been off gluten for over a decade and living well! It gives me so much hope in the midst of all this. Thank you.
I resonate with your story so much. It’s awful being told we’re crazy when we’re really searching for help. My doc made me go gluten free before I got the intestinal biopsy so my results were skewed. But I was happy anyways because I finally understood what was wrong with me. Stick with it and you will inevitably get better ❤️🩹
The neck pain , shoulder pain, blisters on the back hairline. Sometimes itchiness on the scalp. Headaches nonstop and the brain fog thinking I was ADHD! Not to mention the low moods and debilitating anxiety! Achy joints and nausea. Skin crawling was the worst out of all Of it. I thought I was loosing my mind! Thanks for your closely relatable video! I’m so surprised this could be it since the rest of my diet was so good, but I would have gluten once or twice a week.
Thank you so much for sharing! I was diagnosed this morning and your video made me break down. I've had so many of these symptoms. My anxiety has become unbearable and my dr recently prescribed me Adderall for my "ADHD"... I really hope going gluten free helps me in the way that it has helped you.
These were my symptoms combined with a car accident injury with my hip… used to have a cane & wheelchair things were pretty grim before my hip surgery and celiac diagnosis. Spent so many school years even in elementary school in pain and nausea… if I had only known I wonder if I would of graduated college
Wow....I cannot believe it. I have every single one of these symptoms. I was already in shock how similar your story was and then you said insomnia! I've been suffering with all of these for a year. I've been treating for so many things that has not been helping me. Taking a ton of antihistamines for chronic hives but it's not helping. I've just been dealing with the insomnia, fatigue and mental issues... after trying to find causes, seeing several specialist I just gave up and I've been taking meds to help with different things but I hate taking so many meds. I'm going to look into getting tested for celiac diseases!!!
Thank you for sharing your experiences. One thing I would suggest is to not label people by their diagnosis. I do not want to be called a celiac just like a person with multiple sclerosis does not want to be called a sclerotic. I know it is easier to talk in short hand and use celiac and it is commonly used in the medical community. But I think "person who has celiac disease" is much better.
Yeah it’s like one freaking grain of this weed it just sets us on fire. What I noticed is that they like to travel around the body like if they all if the rash all came in one place well it’s gonna go like split into a bunch of spots and like go all over your head that’s what’s happening to me or they would go on my eyebrow or they would go on my back or they would go on my foot. While it’s doing all that it feels very creepy it’s like what are the creepiest experiences you can experience and all this is while you’re being gluten do I mean this is why it never goes away the rash is basically your body ejecting the gluten! Now that I finally stayed away from it. I finally started to feel relief. It’s like people are looking at me I’m like well did you stop burning yet and I’m like no because you keep putting gluten in everything! And I mean everything since I’m familiar with how gluten free stuff taste it taste exactly the same. Many of us wouldn’t even have these symptoms if they would stop injecting it basically I’m surprised it’s not in the air. I don’t even wanna leave the Smiley because Smiley does not convey the terror that this rash has.
The other reason why it hurts is because some rash is actually hurt to heal and this one is so sensitive it hurts to take it off of your body. Like psoriasis it doesn’t hurt to heal it this hurts to heal it! That’s how sensitive it is. And like she said the brain fog is terrible or brain innflamation. That’s what we’re going to find we don’t have celiac disease society has stu. disease! You wouldn’t even have the symptoms if it wasn’t in everything that’s the point. It’s like it’s like you might experience some Once or once a year a day where you were like super itchy you just took a shower and it went away but since it’s an everything wow you experience the crap 365 days a year.And that’s what I would call it I mean my pillowcase was just full of friggin blood because the was all over my ears I mean I was in so much pain I could not use my face because the rash will go on my face.It’s like one of the only rashes that hurts to make it go away it sounds strange yeah because the rash is like I want to stay here I don’t want to be moved.
@@NaturallyKarli I mean you wouldn’t even have to go gluten-free you would be able to just eat gluten but about this terrible rash it’s a put it in everything it’s a mayonnaise it’s a pills it’s in Play-Doh it’s on envelopes. It’s in soups cranberry sauce mustard ketchups make up lotions shampoos deodorants I mean no wonder why you can’t even go have a tiny cupcake that has it in it!
And for me sometimes it wasn’t a splotch. It would divide itself and travel all over my body and its parts we just burn like hades. I mean people thought I was on fire while I was walking into the store and I was I kept trying to drink water. And sometimes my entire body would feel like I have this pressure my head would feel like I had on a hat while I wasn’t wearing a hat I will have lightning across my face as I fall asleep.
Thank you so much for sharing this. I have had the hardest time figuring out what is going on with me. Your story sounds so much like my own with how you describe your skin breakouts. Can you tell me, please, what kind of doctor you saw to get your diagnosis? Dermatologists have been not helpful and I don’t know if just seeing a normal practitioner or a specialist type of doctor would be better. Thanks for sharing hope. It hurts so much some days, not knowing the exact reason is very frustrating.
Hi Mariah, Don’t give up your search for the proper doctor! An immunologist who also happened to be an allergist finally made the autoimmune connection with my situation. But a PCP would also be a great place to go as they would be more familiar with your history (unless you don’t have one yet). Keep me posted on your search. Take care!💕
I'm 14 and got a blood test to see if my lron tablets where working and my doctor had to take more blood from me because he thinks I have celiac disease I find out on Friday I'm really scared that have it and just want to know how to switch gluten free diet
There’s a good chance you don’t have celiac. It’s fairly rare. But if you do, a gf diet is the best thing that everyone happened to me. It forces me to take great care of myself and only eat healthy foods that are going to make my body thrive. It’s easier than it seems. It just takes practice. Let me know how it goes! Good luck 🍀
Diagnosed May of 2019 with Celiac and the DH followed due to the rash etc. Leaky gut was also a factor. It's been like the layers of an onion. My current layer Lyme. Such fun 😵💫 I went carnivore like Mikaela Peterson and did my healing with protein. Also NAET was a game changer. The Gluten Free Society with Dr. Osbourne is also a place for healing and answers
We are very fortunate to have so many celiac and gluten-free resources at our disposal these days. When I was diagnosed in 2010 it was a big guessing game as to how to improve my health status. I'm glad you are feeling better. And just for reference sake, all protein originally comes from plants due to their exclusive ability to convert nitrogen through photosynthesis. Literally all whole plant foods contain protein 👍
I was diagnosed at age 44. I did experience extreme constipation. I also had the itching. Once I got diagnosed, I went GF immediately. However, over the years, as I have gotten older, the itching got beyond painful. I was diagnosed with DH last year, and have been taking Dapsone ever since. That medication helps, but it can do a lot of damage internally. I am deficient in potassium, and because of celiac, I have to take many vitamins and supplements since my body does not absorb nutrients from food very well. To add, my arthritis has flared up big time and I am going to have to be checked for osteoporosis, and the shin splints have been horrible. I have not had shin splints in years, and I do not even jog or run.
Dapsone caused me to have severe anemia so I stopped taking it after several months of due diligence. It just wasn't worth the side effects. All of my deficiencies, shin splints, migraines, blisters, itching, insomnia, etc. went away after years of healing my gut with whole plant foods. I don't let anyone else make my food, including random manufacturing companies and restaurants. Try probiotics. Those helped me a lot 👍 Hope you feel better!
Goodness Karli, I can sadly relate to what you must have gone through! Your symptoms and struggle sound very much like what actress Jennifer Esposito experienced, until finally getting a proper and correct diagnosis. My father was of Ashkenazic Jewish decent, and my mom is Portuguese. I was always so embarrassed whilst changing for gym class, as I had no idea that it was dermatitis herpetiformis on my buttocks, from all the bread and cereals that I regularly ate! It sadly still took many more years of unnecessary struggles, physical and especially emotional, till a doctor finally sent me for an HLA DQ gene test, then a biopsy, and realized it was Celiac disease.. Thank you!
Wow, thanks for sharing. I'm glad people are finding relief with their symptoms and coming to terms with the irreversible changes that are taking place in our bodies. This is a very tiresome and confusing illness. But we can take care of our bodies to reduce its impact on our lives. 💜
@@NaturallyKarli Tiresome and confusing indeed! We of all people understand it’s a lifelong “lifestyle & diet” for us, constantly and daily being vigilant and meal prepping to avoid accidental exposure, and social events are generally a challenge! Thank you so much for what you are doing in helping so many to understand that we can do our part at giving ourselves the best chance to heal quickly, and thrive, and enjoy life😊🍇
Did or does anyone suffer from face flushing due to celiac disease or gut problems? I have celiac disease and rosacea (type 1 face flushing) and I’m hoping sorting my guts out will reduce my flushing. Has anyone experienced this??
My daughter gets flushed and hot on her stomach after gluten, and I have constant red face .We are exploring celiac along with other autoimmune illness.
@@strangertobluewater Hey! Mine is daily flushing in very situation. Not particularly after eating gluten. Iv been GF for ten years anyway and my flushing hasn’t improved, but I also believe it’s stemmed from my gut problems. It’s been proven that a high percentage of people with rosacea have an autoimmune disease. I will be using a naturopath soon to help me with my on going gut problems, testing and diet
I've had this exact skin condition for many years. I gave up gluten 8 months ago totally not realising they were linked and it nearly completely disappeared. I haven't had a diagnosis yet for celiac but I've been told to eat gluten for 6 weeks to test for it. I also read that everyone with DH is celiac so I'm now very sure I have celiac disease. Just a shame I'm being forced into eating it for 6 weeks when I know its destroying my system.. Gobsmacked as I've been trying to find this skin condition for years
DH was one of the most difficult symptoms I experienced while recovering from celiac. I whole-heartedly hope you find a lasting solution for your condition because I remember how much this impacted my quality of life. It is a shame medical personnel require patients to ingest gluten prior to testing. My antibody levels were testing prior to the gluten being removed from my diet. They typically ask you to eat gluten prior to the endoscopy exam as well, but the clinicians decided it was too dangerous for my level of severity. I guess there are exceptions. Are you receiving the antibody test (bloodwork), or the full endoscopy/intestinal biopsy?
Thank you for your reply. @Naturally Karli I have done the blood test but tested negative for celiac apparently.. My doctor said he reckons I'm gluten intolerant but not celiac and that the skin condition could be DH but wants to test for it when it gets bad again. I'm not sure if I ate enough gluten prior to testing. I do get all the symptoms after eating gluten including the skin rash. Not sure what to do next.
It also took me about 3yrs i had the blistery rash and still do its never really fully gone away even though im careful not to eat gluten i also because of the celeac have b12 aneamia and have to have injections every 3 months for life ive been diagnosed 14yrs my symptoms were itchy skin,my blood not been right,brain fog,not diahorea but going to the toilet up to 15 times a day,and at the end been sick alot,they were trying to say i was annorexic and it was all down to the celeac
I’m so sorry you had to endure that. My B12 always seems insufficient too. I wonder why our gut doesn’t return to baseline after successfully removing all the gluten
I get rashes under my breasts and usually swtches sides each attack. High blood sugar of 190 up sets it off too. Same symptoms. I have terrible pain. I also have migrains. I also got that bullseye tick bite on my back in Kansas about 16 years ago. My clinic said they checked for lyme disease but I beleive they lied. I want new tests performed on me for allergies and diseases I know Im experiencing. I've got something pretty bad attacking me. And have really no primary care. My clinic has dropped the ball on me and I need some serious care! Now!
I’m so sorry to hear you are suffering with this. It never occurred to me that high blood sugar may cause flare ups! Thanks for sharing. I hope you find a better PCP soon ❤️🩹
My daughter's symptoms are same as you are telling 😢she got diagnosed with this disease seven months ago ..she has been facing it for almost two years... severe cervical pain .she develops then numbness in legs or Arms ... blisters and pimpled skin on her face...and stomach pain the whole night ..even if I avoid sometimes she eats.. gluten products..I try my best to recover kindly guide me ..I'm really nervous and stressed out.
I'm so sorry to hear about your daughter. This is a complicated disease and everyone experiences it a little differently. It sounds like you are doing a great job helping her cope. Just being there for her and offering unconditional support goes a long way. Best wishes ❤️🩹
Just.found your video.. I have crohns and have been dealing with a flare for a year and finally found out I also have celiac. We share the same rash.. my skin is finally healing .. and that joint point is finally left , I wanted to know how did you find sleep? I still can't find it, I sleep.mayne 4 hours with a sleep aid and my head is still so loud.. You are the first person on you tube I can relate to.thanks for making the video.
Hi Bridget, I’m sorry to hear you are having difficulties sleeping. I still currently struggle with this to some extent but overall it has greatly improved. I recommend practicing good sleep hygiene. Having a solid nighttime routine helps. Let me know if you have any questions!
@@NaturallyKarli i do indeed, curretly trying to get rid of what my GP believes is gluten rash before i go on a 4 to 6-week gluten diet so I can be tested for coeliacs disease. iv suffered severe chronic pain for over 6 years now and after 3 spinal operations, it still persists. thinking it was gluten this whole time but it's only just shown itself in rash form after eating seitan... will see for sure in a few months. I'm vegan already so trying to figure my meals is the next battle.
I can completely relate to your struggle with being a GF vegan. It takes some getting used to, but soon it will be second nature. Hang in there! I hope the removal of gluten will clear up both the rash and the chronic pain. After 11 years being GF, I still suffer with these issues if I don't take care of myself. Symptoms seem to come back when my sleep and stress management are poor... or if something was in my diet that shouldn't have been. Good luck and keep me posted on your outcome!
@@NaturallyKarli Thank you for your kind words and all the wisdom. do you have insta? im more active on there and would love to keep updated on you n your journey
It was one of the most painful if not the most for me and I’m an Aquarius Scorpio. Leo Rising Vedic Capricorn. All alpha placements but this rash. Was the most painful lol
I would suggest making an appointment with your primary care physician. It sounds like you need some serious medical care. The sooner you can get them involved the sooner you will find relief @ZenithAstrology
Bloating like I am nine months pregnant, gas, belching, joint pain, neck pain, shoulder pain, hip pain, little blisters on my tongue….have not been diagnosed yet… went gluten-free four days ago how long before I may start to feel better?
Honestly, it took me years to start feeling better. But I was also eating a lot of processed junk and drinking alcohol most weekends. We’re all different in our time to recovery. Keep experimenting and let me know how it goes!
I'm so sorry to hear that. But I always like to look at the silver lining- I take better care of myself now more than I ever would had without this wake up call. Yes, I do continue to experience minor annoyances with my celiac symptoms, but they are easily managed with a healthy diet and lifestyle habits. Take care & best wishes!❤️🩹
Depression comes from Low serotonin which is produced in the stomach and of course the stomach is not that great with having silly disease so it’s also vitamin D deficiency nail absorbent all of this can cause depression and anxiety
The science behind the chemical-imbalance theory of mental illness has recently been retracted and disproven. But yes, I agree that gut health has a lot to do with our mental wellbeing. 100%👍
Very similar situation, diagnosed at 51 though, was diagnosed with ulcers when in the second grade so probably had it all my life, was diagnosed with several other things but treatment made no difference and sometimes made things worse, Dr are really clueless on this one
I'm sorry to hear you had been suffering with this for so long. It is a relatively new disease so yes, I agree docs can be frustrating on this front. But thankfully, we can do a lot of our own research these days so I am grateful for that: )
My symptoms are: body temperature fluctuations, brain fog, acne breakouts that are slow to heal and painful to touch, lower back pain, neck tightness, muscle weakness, chills at night, irritability and panic attacks. Though I take lots of vitamins.. lately I've been having a hard time keeping sugar at bay and had a reaction last night from half a carrot cake muffin... regrets. I plan to go vegan for a bit to heal...
Have you taken a look at Oxalates and the work of Sally K Norton, her book is titled, "Toxic Superfoods". Celiac symptoms have been found to be connected with an overload of oxalates.
Hi there, thanks for the comment. Our bodies actually manufacture more oxalates than we could ever obtain from food so that claim has yet to be substantiated by any credible scientific evidence. There are a lot of nutritional claims out there that really aren’t supported by data. But I would be happy to review any articles you have available on the topic.
I also have dermatitis herpetiformis aka Duhring’s Disease. I found out last year that, for some people, nsaids and iodine containing foods can cause the same reaction as ingesting gluten.
I’m realizing my primary progressive MS was because of celiacs. I was told I didn’t have because they tested me when I was a year gluten free. I never imagined I did because I had zero go symptoms. Instead it presented as gluten ataxia AND neuropathy. Functional medicine my friends.. it’s the way to go ♥️ PS Today is day 26 of the Wahl’s Protocol and neuropathy, arthritis…gone. I can lift my arms lolol … and drop leg is coming back. Migraines are gone ♥️
Crazy. I have been having realll sore necks and cant sleep. I went fully dairy free with some gluten and got my life back but when i eat a good amount of bread i notice big fatigue. Sleep has beem terrible. I think its bacteria at the route of our problems. I noticed celery juice is quite impressive
@@NaturallyKarli im wondering are we all low on stomach acid? I heard all allergies are protein allergies... over time eating bread it must use up all our acid?
I’m having troubles and I came across your channel. I have high blood pressure and my doctor has put me on carafate and Prilosec. My stomach has gotten better however there are days that my ears and my face get so hot it drives me crazy and other days my face is cool as a cucumber. I was just wondering if the gluten allergy had anything to do with this. I dont get blisters or anything just the pure hotness. Do you think this is because of a gluten allergy? Thank you.
It’s a possibility. Sounds like some form of autoimmune reaction. You might want to research the damage prilosec does to our gut. Autoimmune diseases typically start with some form of leaky gut syndrome. These drugs usually provide intestinal relief while causing long term problems. If you think it’s a reaction to gluten, you can ask your doc for a blood test to rule out celiac disease. Good luck ❤️🩹
Hi! I actually have recently been exposed to cross containination a few times. Yes I have had the high fever as well. For me unfortunately I had to have a few Fry's of my daughters so I know part of cross containination was that. I can't remember if I talked with a nutritionist bwcuase was so long ago but I did talk with another lady who has had it for years and was a wealth of knowledge saying h need to find a Dr who is gi speaclizws in celiac.
Thank you so much for this video, very informative. Do you still experience those joint pain ? especially neck pain? If not how long did it take for these symptoms to go away? Have you had some kind of stiffness in your muscles? TIA
Hi Tia! These are such excellent questions. Yes, I still experience neck pain. But I notice that the closer and longer I adhere to a high nutrient (low inflammatory) diet the more the pain diminishes. It's particularly noticeable during days when I am sleep deprived or standing at my computer hunched over all day. Turmeric and ginger root have the greatest purported effects on reducing inflammation. But I recently started using a Theragun on my achy muscles and this has been a total game changer! They are expensive, but well worth the investment. The muscle stiffness and soreness also correlates with my diet and sleep behaviors, stress as well.
@@NaturallyKarli Thanx for your reply. Theraguns are really expensive, so you may have trigger points in your shoulder muscles too, I do have those, maybe someday I try trigger point injection. I though changing the diet and going Gluten free will cause all the pains go away ... seems that's not the case :"( Hope you get well soon
Yes, I experienced this as well. Using cold ice packs helps to reduce the inflammation and redness. This would usually occur after ingesting gluten for me. Are you still suffering with these symptoms?
@@NaturallyKarli it hasn’t happened in a while but recently I had like 4 cookies with hella gluten and I have SEVER episodes. Honestly not sure yet if it’s related but it’s definitely alllll the symptoms. I get headaches, bloated, cold sometimes even run a low fever, shake, then I crash after about 30 minutes get super tired, left exhausted, and feels like my brain don’t work. I usually feel better if i am eating no gluten but the recovery takes a week or two to feel “normal” again. - JUST noticing it starts after I’ve had gluten but I have a scope appt tomorrow so hopefully I find out. And hopefully it IS celiac.
I suffer from migraines, and have tried so many things. I will have to give a WFPB diet a try. That being said, and maybe a little off topic from this particular video, but a genuine question. I am a macro counter and in the process of building muscle and losing fat after having my 4th baby. I need to meet a high level of protein so I do not lose muscle while in a caloric deficit. What are the best and highest sources of plant base sources in your opinion. Also, have you tried "Beyond Meat" products? I would love to see a review/hear your opinion about that brand in particular. I've heard good things about their products.
I actually am in the middle of making videos on each of those topics! Great questions. Congrats on your fourth baby, wow! I can barely keep my head straight with one, (but very much wanting more:). The best thing about eating this way is that you never have to consciously keep track of your macros because you are able to obtain them from a variety of sources that contain a perfectly balanced amount of each carb, protein, and fat distributions required by our bodies. While with animal products it is the opposite. Most of those foods contain a lot of saturated fat, some protein and very little carbs.
I completely agree! I will be focusing on carbs in an upcoming short to reach this point with my audience. You'll have to let me know if I get the message across.
Hi Karli, I found this video to be extremely helpful. I am so very new to all of this. My diagnosis came just this November so I have only been dealing with this for 3 months. However it seems I have been dealing with the symptoms for well over 20 years. Headaches/migraines for at least that long. Up until 7 years ago I was a night auditor so I thought my sleep habits or lack there of was all part of having the job I had. Lastly I am one who had a ton of problems digestively. I went through a Celiac Storm. In September I started having bathroom issues so bad I could no longer work. Brain fog was so bad. My energy gone. I was so close to loosing my job. Depression and anxiety both hit me very hard. I even had PVC's which I believe manifested through this whole ordeal to get me to see doctors. Now that I have been gluten free for 3 months I have only had 2 headaches, bloating and brain fog and it was due to being "glutened". I will continue to look at your other videos and learn from you. Thank you for doing this and making people like me not feel alone!
Awe, Shandi. My heart goes out to you and all the distress you are experiencing. I'm so glad these videos are helping others work through their diagnosis and symptoms. This is an awful sickness BUT it can be managed with due diligence! I find that to be a wonderful silver lining. Hang in their and reach out if you need anything at all
I'm not sure if you are asking Shandi or myself, but I do still have flare ups when triggered by environmental factors or gluten contamination. It seems our immune systems mistake a lot of "normal" things for foreign invaders after our gut has been so dramatically compromised. What's your story? Do you experience celiac symptoms?
I am starting to feel much better but getting glutened is no picnic. I have officially been diagnosed Celiac. It's been extremely difficult wrapping my head around it. 🙃. I'm trying to learn as much as I can. I'm getting a scan on my bones to see how much malnutrition effected me. A special blood panel to see were all my vitamin levels are. Lastly I'm going to my cardiologist to see if my heart is at risk/symptom of Celiac.
Have you had the intestinal biopsy? That will tell you a lot about the current state of your absorption capabilities and how much damage has occurred. Hope you feel better soon!
Yes I have a certificate in plant-based nutrition from T. Colin Campbell's institute. I was in a dietetics program for 3 years before recognizing their curriculum was funded by major food companies. I also have a degree in psychology, while I am currently studying in Wellness Forum Health Institute to become a Certified Health Educator. I highly recommend pursuing your educational potential🤗
My mom developed an allergy to gluten in her her twenties. Now I'm 23 and I've been getting facial rashes whenever I eat gluten. It took me a while to realize it wasn't just really bad acne, but when I eliminated gluten, the sores cleared, and then when I ate gluten, the sores would reappear
I have significant gluten intolerance (all these symptoms and more) but always get a negative blood test. I've never had an endoscopy or genetic testing. Doctors just tell me not to eat gluten because that's the only cure anyway.
The rash is also so powerful that it knocks you out it’s that painful like you just want to go to sleep because that’s the only time you don’t feel it until you actually do. So don’t wake up
Neurological symptoms (ataxia, loss of short term memory, poor balance, ringing in the ears, photophobia, emotional volatility, etc etc etc) are B complex deficiency!!!! I had CD. I had literally every B complex deficiency in the book and in severe form (with the sole exception of the butterfly rash, absent almost certainly because my photophobia was so bad I never went outside during the day)' ataxia was one of the worst. I could not walk across flat unbroken pavement without continually tripping over my own feet! I started taking B complex. 100mg/day did nothing. My urine was still clear like water. I upped the dose 100 MG/day until my urine turned yellow again, held it at that dose for a few days, reduced it 100mg/day and it stayed yellow kept it there, if it turned clear went back up and so on. Within two weeks all about B complex deficiencies started to improve rapidly and by the end of the third week when my urine finally turned yellow at 2000 MG/day all deficiency symptoms had totally disappeared. In fact all the areas that had been problems were now working far better than ever before. I was not only back to normal function but considerably better. Celiac ataxia is due to being vitamin deficiency which can be corrected in very short order by vitamin supplementation without having to wait for the intestinal lining to recover! I had been 20% below normal lien healthy weight but had only recovered a small part of that before my vitamin deficiencies were gone. In addition I strongly suspect that the vitamin supplementation (I also supplemented all of the vitamins for which I had deficiency symptoms) enabled everything including the lining of my intestine to recover much more quickly than normal. (Total elimination of all processed foods probably had a great deal to do with that because it is the only way that you can reliably exclude all gluten) Doctors should stop listening to all of the garbage spewed by pharmaceutical representatives and start thinking VITAMINS! It's not "the most expensive urine in the world", it dear God is one of the most effective therapies in the world!
I'm listening to your symptom list and going "tick, tick, tick, tick, tick...." Decades of chronic muscle pain, stomach issues, depression, anxiety, insomnia and eczema. I'm waiting to get my tests. All I can do is laugh and shake my head if all this bullsh!t was from 1 thing this whole time.
@@NaturallyKarli Yep, just got diagnosed as celiac. Thank you for your video. Helped me realise how important this diagnosis could be for me and commit to the full testing.
I tell you the internet has helped me more than any doctor. My symptoms were so mild. I had small mild rashes, didn’t think much. Then there was the fatigue, then mental health issues, then random swelling, then chronic pain, then neuropathy. All my problems were blamed on my mental health. It wasn’t until I got some random genetic testing that it was found. I spent most of my 20’s so sick. I was using a cane. I had no stomach issues other than the occasional heartburn or constipation. I had no idea.
Thanks so much for sharing, Rachel. I’m sorry you had to endure that. Did your symptoms improve with diet and lifestyle changes?
@@NaturallyKarli yes! It look a few years for my body to repair the damage but yeah I’m almost back to normal.
Oh great! That makes me so happy!!! It took my body several years to recover as well. I'm still not 100%, but I am probably as close to it as I'll ever get... I've come to terms with it however. Just glad I'm not suffering anymore: ) Glad you're feeling better
Same
Agree...its better to scan d internet than asking the doctor..
I was diagnosed with celiac disease when I was 46. I was fighting for an answer since I was a teenager. Every time I talked to a Dr about the pain I was having I was told that pain in normal after eating, and it's in my head.
Wow, that brings back horrible memories. I’m so sorry you had to experience this. I feel like they would rather sell their soul than admit that they simply don’t have an answer. I read this is actually reported often by celiac patients- people trying to convince them that their symptoms are all in their head.
Ohh 😯 God...I really feel so bad but great you atleast got the diagnosis...my daughter also received such comments that she is getting mentally sick n she needs counseling or therapy...over reacting but I constantly say that I know my daughter...😢
@@NaturallyKarli a year later and I’m now seeing your reply.. I didn’t even see it in the notifications.
I had a dr once whose famous answer was I don’t know. For everything. So I stopped going to see her and just went to walk in clinics. Seems to me that is where I can get answers. It was a walk in clinic dr who asked me if I had ever been tested for celiac disease. I had gone in to see if a dr could order iron tests for me because I could feel that I was low again. My dr at the time was tired of me coming in twice a year asking for the tests. I’ve been anemic for as long as I can remember. That walk in clinic dr said there had to be a reason as to why my iron is always so low. So she ordered me the test and it came back positive.
@@madihaghazanfar5093 are you suspecting celiac disease with her?
Drs just want to push those pills and diagnosing mental illnesses when really our body is lacking vital minerals and vitamins. They play a very very important role in how our body and brain functions! There are a couple minerals that if we are lacking can cause anxiety and such.
Me too, thanks for the internet. After bread, biscuits, wheat products my buttocks filled with very itchy rashes since teen.After 50 pass blood and was suspicious of bowel cancer or ulcer.With gluten free diet my belly has disappeared, now three months most symptoms have disappeared.
I diagnosed myself as gluten intolerant a year and a half ago. I’m now 68 years old. I complained for decades but was never listened to. First, I’m overweight and have lost 30 lbs since I took out gluten. My skin issues started at 11 years old. Then, my mouth had ulcers all the time while my teeth are dark. The teeth, even baby teeth, also shatter, flake off in layers, or rot from the inside out. I never had a good cleaning without being told to floss because the gums kept bleeding (inflammation), but I floss religiously. I had migraines as well. I have also come to discover that my parents probably had this problem, too: my mother had weight and teeth issues while my father had the skin problems. My niece is also gluten intolerant. This argues for genetics but not the root cause.
I’m so sorry to hear you have suffered from this unknowingly for so long. I have also experienced dental problems. This has bee shown to occur with some people with celiac
Headache
Sinus symptoms
Joint pain
Rashes
Stomach bloating rumbling pain
Numbness tingling burning sensation in arms and feet
Anxiety and depression
This as been going on for 2 years now
Trying gluten free now
Let me know how it goes ❤️🩹
go in hard on the diet for a solid year, not simply a few months, before you start falling with gluten ataxia😢 ask me how I know
I am happy and feel finally relieved that after 20 years of feeling crazy because I did not “feel right” and was hospitalized twice for crazy blood sugar (clocked 40), not diabetic, not thyroid. A team could not figure it out.
2 years ago I started getting a redness on my face that turned into blisters that just kept getting worse.
Doc I have now is an AMAZING person:) She figured it out in 10 minutes today:)
I had such beautiful skin, she saw my face and immediately figured things out.
20 years of thinking I was a hypochondriac…
Wow! I’m so glad you finally got a proper diagnosis. The blisters aren’t as bad when you finally obtain a name for them and the reason why they occur. People thought I was making it all up for years. Why would anyone want to pretend to be in agony for years on end?!
Thanks for sharing your experience ❤️🩹
Started with headaches, then a weird sensation in lower chest/upper gut, and chest discomfort, bloating and constipation. Head CT normal and 2 EKGs normal. Then MD ordered endoscopy which was suspicious for celiac and blood work confirmed. I have been gluten-free since August and this week is the second time I've had symptoms pre-diagnosis. Been careful as i can be, so not sure whats up, but so over it. Thanka for informative video!
I have had celiac disease for years now. I have the DH as well. The rash and blisters are awful. Suffered with migraines, joint paint, muscle aches, imbalance and difficulty concentrating. I was swollen and overweight and miserable. I was on a strict GF diet, however, kept having setbacks every month or two. I knew there had to be an issue.
I did more research on my own. Gluten is ONE TYPE of LECTIN. There are many types of lectins. So, I decided to go on Dr. Steven Gundry's diet (the plant paradox). You can look up his Yes and No list of what is safe and not safe to eat. Within 3 weeks, migraines were gone, my balance came back, rash gone, joint pain and muscle aches improved. This diet is not easy but 2 years later I am 30 lbs. lighter, no longer swollen and my quality of life is better. So, my point is, watch out for certain LECTINS...not just gluten.
I'm glad you're feeling better. Lectins, like the ones in beans for instance, have actually been a driving force in my recovery from gluten-related injury. But it's great to find something that works for you, specifically.
Also I amazed that this is the only YT video that the person answers nearly every single comment! That is so thoughtful and helpful.
Awe, really!? That’s surprising. I appreciate it when people take time out of their day to comment on my videos 😊
In my late 20s I developed the most uncontrollably itchy, painful, and blistery rash on my elbows, knees, lower back, and jawline. At first I thought maybe it was poison ivy, but after a few months I decided to see a dermatologist. She immediately diagnosed me with DH and I've been gluten free for 6 years. I'm glad you finally got your diagnosis!
You as well! Did you find it to help right away?
@@NaturallyKarli it took a couple of months to clear up, but a strong steroid cream helped with the itching and the blisters. I now refer to them as my "gluten bumps" if they ever show up by accident.
Yikes. I used frozen peas most of the time to stop the itching bc I was so sick of all the meds lol. Glad to hear you’re feeling better!😊
Your video popped up for me since I’ve been trying to navigate through this new diagnosis of celiac disease. Thanks for sharing! I was suffering for quite awhile and to hear your ears would get really inflamed and your neck would hurt so terribly (two pretty odd symptoms which my dr didn’t think was related to the gluten) was so validating!! I also have dermatitis herpetiformis. Well I did before I started being gluten free. All of those nasty symptoms went away. I swear I wish all drs would watch you tube to get up to date and these kinds of things. I feel like having this is like being in menopause (which I’m in now) because drs know just as little about this as they know about that lol. It shouldn’t be this way. Anyway thanks again for sharing your story. 😊
Thanks Karlie. I have psoriasis, bloating, brain fog, sort joints since 2005 especially bloating. You are a God send. Bless you even though I am not religious. John J Downunder :)
Gluten will effect you if you have any joint arthritis even it’s mild
I was just diagnosed and it is soo validating. My body always hurts soo bad and I’m exhausted.
I can relate 100%! Hope you start feeling better
Karli, THANK YOU for sharing your story. We still have too many physicians who easily miss it. Awareness helps! Thank you for bringing awareness.
Absolutely!! I'm glad so many people are finding their way regardless of the limitations imposed by the medical field.
Wow… thank you for this video. We had the same exact symptoms.
1. I was convinced I had bed bugs because there was no way I would have a rash this long (7 years later it’s still here). Obviously there was no bed bugs. I gave away my perfect Casper for a Purple mattress and it was way too firm, this led to shoulder and chest issues. Sold it and went back to Casper.
2. Look at the time, money, stress, and energy wasted all because of a rash. The mental toll it took on me was nuts (and that’s without just everyday life issues). 100% led to depression.
3. The migraines… Even when I explain them to people I felt like I was being dramatic. But no, those migraines are horrendous. I wouldn’t want to wish it on anyone. To the point where my peripheral vision goes dark to seeing the words I’m reading literally start swirling. And that’s not even the worst part - those are just side effects - after a moment of calm, the worst migraine comes… it has happened to me twice. This first one led me to completely stop drinking cold turkey and the second made me really look into avoiding gluten all together.
Hearing your story gave me the little bit of validation I needed that I’m not making this up - time to get serious. Also wished I took it more serious a few years ago instead of just going deeper into what was causing harm. If ur reading this and this sounds like you: STOP CONSUMING GLUTEN (start slow - it wont be easy).
My symptoms prior to celiac diagnosis started with a pin a needle like feeling in the soles of my feet and palms of my hands and really extreme brain fog. So bad it was affecting my reasoning and emotions..I don't recall much of 2011, 2012 & 2013 leading up to diagnosis in 2013. Being that celiac is autoimmune, it affects or creates tons of other issues..
I have widespread pain, extreme fatigue and migraines. I finally was just diagnosed after a few years of "getting by" with this pain. My neck is the worst. I'm just so glad I finally know what's wrong. 🙏🥳☺️
That’s exactly how I felt! There’s actually a name for what is happening to me? Woohoo!🥳lol
How do you feel now
@@moeali7368 i feel way better not eating gluten now. ☺️
Did your neck hurt so much that you have to turn your whole body to look around? I get that sometimes out of nowhere and will last a few days. Slowly comes on and slowly leaves randomly.
@@andrewgonzalez4230 yes. Since my comment I also was diagnosed with fibromyalgia. 😭
Thank you for this video so eye opening same symptoms for years not knowing why until recently.
Now understanding the headaches,inflammation, fatigue, fingers splitting was due to a wheat allergy I had. Thank you for this video . On a journey to heal my body now becoming wheat free.
Best of luck with your health journey ❤️🩹
Thank you for this. I was plant based for a long time and my stomach has been bothering me for so long. I couldn’t figure out how I was plant based and still bloated and had bad bowl issues. I have had a rash like what you describe and the only thing that stops the itching was to sit under burning hot water to relieve the itch. They thought that I had rheumatoid arthritis my joints hurt so badly. I had mouth sores.. it was the worst. Cutting down on sugar and getting rid of gluten made an astonishing difference. I’m nervous to eat it again to get diagnosed.
I completely understand. My antibody levels were so high the doctor decided not to put me back on gluten for the endoscopy. Good luck 👍
don't eat it again for a silly diag.....just follow your gut
Thank you so much for making this video. Im currently struggling with this same issue and hearing someone else say their condition is now “tolerable” brings me hope. I really needed this. Again, thank you friend.
You are so welcome! Glad you found it reassuring. I'm so sorry for what you are experiencing but it will pass! As long as you take good care of yourself
Joint pain!!! Sleep disruption qaking up in middle of night
Major anxiety
I figured one thing reason out but i still am jnsure what else caused this strong reaction. Memory yes!
My ear left was red like ur finger.
Ive been on a gf diet.
I had swollen lymph nodes has anyone else had this.
@@sunshineinhereyes3559 Yes, I have that right now. Painful throat 😢
I have been watching peoples testimony on gluten and it’s hard to think that I have gluten problems because mine just don’t match theirs. Untell your video, mine matches every single one of yours my neck hurts all the time I have that rash, migraines. I don’t have major stomach problems only problem I have is bloating as far as stomach. This is Day two of gluten-free for me listening to you I will never eat it again. I have been strict vegan for years with very low salt and that helped the migraines be less, but I still had a low-grade headache everyday and pretty high neck pain every day I I’ve never tried cutting out gluten for longer than a week. Thank you so much I just could not convince myself I really had issues with gluten. until I heard all your symptoms and what you had to say. I really appreciate you taking the time to talk about the uncommon symptoms thank you again.
Awe I’m so glad you found this helpful! Give it at least a few months and you’ll realize how easy being gluten-free can really be. Hope you feel better ❤️🩹
It is always useful to be diagnosed by a doctor, though. Wish you the best ❤.
I just got diagnosed with celiac about 8 months ago. I still don’t feel 100% but definitely have seen lots of improvements. How long did it take everyone to feel better? I have probly had it for years without knowing it - I had very “seemingly” non-related vague symptoms (excruciating periods to the point I almost pursued surgery to rule out endometriosis, migraines, extremely low ferritin, chronic constipation, etc). Never had crazy stomach pain or anything like that…fast forward, my period pain has been cut in half and I gained 20 pounds a few months into GF diet because I had been so underweight from not absorbing nutrients. It’s been a wild ride. I now struggle most with the mental part of it and especially social anxiety because so much of relationships revolve around food which you don’t think about until you can no longer eat what everyone else does…does anyone else struggle with the social part? What helps? And again, how long before you feel like a normal human again physically and mentally?
Hi Carolanne, it took me at least 6-7 years on a GF plant-based diet before I started feeling like myself again. This varies for everyone, though. And yes- the social aspect was really difficult in the beginning. But after almost 13 years, eating different foods from my friends and fam doesn't bother me anymore. The more you do it the more it becomes your new norm. Good luck with your healing journey
OMG you are definitely describing me in everything
Those are two very impairing illnesses. My heart goes out to you
It started with acid reflux/indigestion then selling and hives. I tested positive for celiac in my bloodwork. Stopped eating gluten and went away fast. It was even affecting my mental state/depression. I would get itchy swollen fingers, hands, ears and lips
Thank you very much for making this video. I am a 43 year old woman who has slowly been killing myself with gluten all my life and, l didn’t realize it until about 4 months ago. All of my symptoms were like yours:
1:) Focus- I could not focus to save my soul, to the point where I begged my doctor to give me a.d.d medicine so I wouldn’t get fired at work. I was forgetful, lazy, tired all the time, and had no motivation. 2 months after going gluten/ grain free I went from the worst employee to one of top performing employees- no more medicine, mental fog was gone, I had energy, happy, and could finally focus.
2.) Headaches/ Migraines: I was having to take Advil almost every day just to get through the day. I cringe now knowing what I’ve done to my body with that.
3.) Joint pain and muscle stiffness: I had the exact same issues with my neck and had to stretch it from side to side countless times per day. Once I got into my late 30’s I also developed debilitating lower back problems that were severe enough that I would throw my back out at least once per year and be in bed for a week each time. I felt like a 90 year old woman in a 30/40 year old body. Now I am pain free!!! I feel 20 again! So much energy! So happy! I can do all the physical things I had given up on ever doing again. It’s amazing!!!
4.) Weight gain- What led me on the path to discovering that I had Celiac Disease was a friend of mine suggested I have blood work done to see if I had thyroid issues because of my weight gain. I did and sure enough I had hypothyroidism. I went to see a specialist and she did a sonogram of my thyroid and said it was pretty much dead and I would need to be on medicine the rest of my life :( Wondering what could have caused this, I started down the rabbit trail and discovered Celiac Disease is linked to thyroid issues. I’m guessing the constant autoimmune response from the gluten slowly killed it. That’s when I made the decision to go gluten/grain free and BAM that’s when everything changed.
5.) Skin issues: this is the one thing that has actually gotten worse after going GF. I think my body has finally got a chance to heal now and become normal, and even a small amount of gluten will now throw me into a full itchy breakout. For some reason it always starts on my right inner forearm - a silver dollar size rash, then spreads. I feel like it’s my body saying ‘Oh heck no!!! We’re not going back!’ And guess what- the fear of that breakout sometimes keeps me in line when I’m tempted to have even a tiny bite of something I can’t have.
6.) TMI stuff: the other issues I had was gas, constantly feeling bloated, and had diarrhea . I would literally fart 40+ times/ day. And not a little toot either. I also went #2 3-5 times per day. Since going GF I no longer have any of these issues.
7.) Hot ALL the time: I kept my a/c at 66 degrees. I was hot all… the …time! I blamed it on my weight gain, but after being gf for a month I started to notice I was actually starting to get cold at that temp. Now I am able to keep the temp between 70-72 and be comfortable. My theory is that the autoimmune response kept me inflamed all the time, and inflammation puts off heat. Whatever the case- I’m glad I no longer battle that.
The Paleo diet has really helped me. I now eat for nutrients instead of trying to cut calories. Much love to anyone suffering from this.
I resonate with your words so much. Especially feeling like a 90 year old woman in a young body, having to take Excedrine multiple times per day to combat migraines, and having zero motivation/energy to this day when I accidentally eat gluten. My brain fog and hand swelling/inflammation has begun to raise its ugly head again even to this day. Ugh it truly is a lifelong struggle! Hang in there and thanks for sharing ☺️
Hi I’m a guy who has severe muscle stiffness and pain all over my body as a result of lifting heavy in the gym however I am a celiac and I wasn’t following the diet at the time due to being an arrogant know it all (I was young) how long did it take for your muscular symptoms to resolve
@@moeali7368 It was probably about 3 days of entirely clean eating (for me that means no grains whatsoever and no artificial crap) before I felt a big difference. I guess the junk was still in my system for a bit. After a week I had a massive energy boost, people were asking me why I was in such a great mood, and I felt on top of the world.
Have you ever seen the movie Limitless? I swear the change felt like that. I was a new person. Hope this works for you too.
The stiffness should go away little by little over the first few days- hang in there. Good luck- you CAN do this!
Thank you! My daughter is 40 and it took almost 10 years for diagnosis. Your symptoms are very similar to hers. The blisters on her face were awful. Social activities were none. It's so sad to go through this and to watch it. She is totally gf now. We as a family are very careful and aware around food. People don't realize the impact of cross contamination, even a bread crumb!! She had all of your symptoms and more, vomiting too. It's sad there is no other medical help for people with celiac. My heart breaks.
Wow, thanks for sharing. Your daughter is truly fortunate to have such an accommodating family. Glad she was able to achieve a proper diagnosis ❤️🩹
It's hard to get diagnosed for anything it takes the right doctor to care
agreed 100%
You just described my life. So much love to you. I know how hard this is😔
Blessings to all🤍
Thanks for your support and good luck on your journey 💕
Tonight you are helping me in a huge way. I have had tbese blusters all over my face along the nerve path for 4 months. 3 Drs have no idea what so ever is causing it. Im a retired EMT and research my symptoms which has led me to Celiac disease evidently of the skin. I ate two biscuts 3 days ago and the pain is unreal.
Today I learned that if you have gut issues finding a Dr trained in FUNCTIONAL MEDICINE is how to get REAL HELP. AND if you have Northern European DNA you are likely to get it.
Thank you THANK YOU! From the bottom of my heart. ❤I know you will play a part in me regaining my health. ❤
You are so welcome! I’m glad you found some answers and I’m sorry you are dealing with potential DH symptoms. This is an unbelievably uncomfortable disorder. Take care!
@@NaturallyKarli Thank you. Its very lonely, I have been hiding at home for months til my mom convinced me to come for a visit. The first person who saw me without my mask adked me "Is it Mersa?" As he takes 2 steps back. I am in excruciating pain today, and about out of hope. Dr appt tomorrow, fingers crossed, but tomorrow feels forever away.
Ive had it my whole life I think, its just never reared it ugly head like this, just one blister under my earlobe from time to time. And I never understood why my hands would get hot and red after dinner sometimes.. i thought it was too much salt in my meal. After hearing your story I had a couple AH HA! Moments. Also severe right knee pain out of no where, I thought, did I tear something? Looking at knee braces 2 days ago. Thank you for everything. You give me and others like me, hope. Something Im almost out of today. Because Im also experiencing severe Celiac symptoms. Last gluten 4 days ago. And believe me its the LAST!!! Good lord, the pain is debilitating. Im fasting now because to eat means to suffer. 🥵😪.
get an opthamologist to look at your optic nerve if you have CD...my eye doc didn't catch the atrophy despite looking at my optic nerve each visit.
Is optic nerve atrophy common in celiac disease?
@@NaturallyKarli optic nerve atrophy (cannot be reversed) can be with any systemic inflammation, but CD also causes nutritional deficits, which are yet another way the optic nerve can be damaged 💗 better safe than sorry
Hmm, very interesting. I'll have to bring this up with my doc. Thanks so much!
A few questions.
1. How long did it take before you noticed the fog lift after you stopped gluten?
2. Did the brain fog make it difficult to pay attention to the road while driving?
3. Did you have dreams when you were eating gluten?
4. Did your sleep imorove?
I ask because these are all things I am struggling with.
Hi Charlie, I'm so glad you reached out & I am sincerely sorry you are dealing with these issues. The "fog" is still present on days when I did not sleep well or I am overly stressed. But it took about 6 years to be honest. I had to remove all the processed and animal foods from my diet before noticing any cognitive improvement.
Yes! Very difficult to drive even now in the later end of each day.
#3. is hilarious, but yeah. Sometimes I would eat bread then wake up in a panic. It happens much less these days.
#4. I still struggle with my sleep regularly, but it's no where near as bad as it used to be. The better I take care of myself, the better my body cooperates with me.
Good luck with your situation and take care of yourself!
@CookieMonster_lmao that’s what I’m saying.
I'm so sympathetic with your symptoms. I too have suffered some of your sypmtoms. So glad you finally were diagnosed.
Thank you! It was quite the journey. I'm actually grateful that I have to be more cognizant of my lifestyle choices due to this illness. It helps to keep me in check lol; )
I have the skin blisters that left permanent circular scars all over and on face. Started at age 9. Got diagnosed last year at age 42. Skin biopsy and bloodwork confirmed. Then got diagnosed with drusen in my eyes from this condition. Thank you for sharing. These are the rare side effects of celiac.
I'm glad to hear you finally have an explanation for your health condition. DH is very difficult to diagnose, but easy to manage once you have removed all the gluten and other troublesome foods from your diet. Take care!
Im glad you got it sorted out, I was fortunate because my doctor suspected celiacs early on, my symptoms were mainly malnutrition and gastric related.
Yes! I had extremely slow gastric emptying. Was that your experience as well?
@@NaturallyKarli: Not really, I became aware of something was wrong with my stomach over 10 years ago and my doctor put me on B12 injections, but didn't look any further. Then in 2022 things got really bad, and that's when he sent me for a lot of tests an eventually a biopsy, that confirmed celiacs. So now I have a dietician instead of a doctor. But she's really good. Thanks for your video.
@@NaturallyKarli Yes I think so.
Wow, I'm sorry you had to experience that for so long. But it certainly is a relief having a name for what is going on with our bodies (celiac)! I'm also thankful that the illness is manageable with due diligence.
I was diagnosed with Celiac several years ago. I have had bad eczema and skin issues since I was a baby, but my real problems started when I was about 13. I would get horrible, debilitating stomach aches. All I could do was lay curled up in a ball and wait for the pain to stop. I was throwing up all the time. I had terrible neck pain, severe TMJ, and other joint pains. I also had bad acne. I experienced everything you mentioned. Finally my doctor decided to do a blood test, and lo and behold, Celiac. I still have what I consider to be Celiac flares (although I am 100% gluten free) I will still get stomach aches, skin itches, and I still have joint issues. But for the most part I am doing good, thank God! It is really helpful to know that someone else has experienced the same things that I did!
Hi Melina, my heart goes out to you. Thanks so much for sharing. I too continue to suffer with similar ailments even though I'm very diligent about the GF lifestyle. But I am very grateful I am not nearly as sick as I was when this all began years back. There is thankfully a silver lining with this condition- we control most of it! Take care 💜
@NaturallyKarli thank you so much for your response! I completely agree, I am very thankful that with proper diet we can feel as good as we do! As I said before, it is so helpful to me to know that you too still have some issues related to Celiac even though you are GF. We have to keep doing our best every day!
@@NaturallyKarli and Happy New Year!!
Absolutely. This is our life now and we must make the most out of it 💜😊
Happy New Year!
I was careful to avoid gluten for a month, then I got a loaf of sourdough bread from a bakery, the next day I had a lot of the same symptoms you mentioned. I found it to be very debilitating. I was pretty worried what was wrong with me, but after watching this I'm now pretty confident it was just the gluten and not something worse
Have you asked your doc for the blood work? It’s super common
@@NaturallyKarli I don't have a doctor that's why I'm pretty into the whole "let thy food be thy medicine" thing like Hippocrates said. But I also have training and science and sometimes I have ordered some blood test for myself off some websites. But when I really look into it there is very solid evidence that the problem is not even just the gluten it's really glyphosate that ends up causing a really bad reaction to gluten and possibly the glyphosate gets taken up into the gluten protein structure as a replacement for glycine. Dr. Stephanie Seneff has done some really good work on this.
Dr. Zach Bush is another great researcher that shares the same philosophy. But I was simply suggesting to start with the standard celiac panel for getting a clearer picture on your antibody levels. Private labels will certainly take care of this. Good luck!
Thank you for sharing. Makes me finally want to go and get a doctors appointment to see if I have the same issue.
Bless you, thank you for sharing your journey 😊
You are so welcome! Do you have a celiac diagnosis or suffer with similar ailments?
@@NaturallyKarli I don't, I was tested for it but negative. I have other autoimmune diseases though x
It took 5yrs for the medical field to dx me and I’ve been gf 3 yrs now. I feel better but not healed yet. New to your channel and will check out your other videos for your journey. Thanks for sharing ❤️
You are so welcome! I always hoped to connect with other individuals going through similar circumstances when I was in the middle of those initial painful years. I'm so glad you were able to finally receive a proper diagnosis. It was my hope that doctors would have become more attuned to these sporadic signs and symptoms within the past decade. Thanks for commenting!
I self diagnosed might be powerful enough to make you. “Stove HOT.” Or I’m just powerful.’ Let me chill I am talking as of the DH is past tense. I could be hoping and still have 2 weeks to go.
Plus hives don’t like emotions or hair or a 1 mile and hour breeze.
Awaiting blood test for celiac. My main symptoms are mouth ulcers/ gum sores that last weeks and weeks. I was diagnosed hypothyroid ten years ago after a virus
This is autoimmune which can increase chance of other ones ie celiac. So I will see what blood test brings.
You’re right about acquiring additional autoimmune diseases- that’s why I’m so diligent with my diet and lifestyle choices. Hopefully your blood work comes back normal 🤞
I have the delightful combination of abdominal discomfort and all related symptoms, all the skin related issues, and my poor, poor neck and all the cognitive issues you listed above and depression and anxiety. So I had no clue these were all caused by the same thing and no doctor would help me. All they ever said was to lose weight and my body would fix itself. I suffered from all these in varying degrees since my early 20's and it wasn't until I was 34 (36 now) that my dad realised he has celiac and he told me the symptoms and I was like, hey, wait a minute...
The recovery part is also so terrible honestly. I think more people should talk about how difficult it is to avoid accidental gluten ingestion because it's everywhere and how easily your body relapses and every single symptom comes back with a vengeance. I have recovered a lot, but there's still so much to go. I just stopped having anemia lmao
Of course, because I'm off gluten, no doctor gives me an official diagnosis. Considering how bad it gets if I accidentally eat even a miniscule amount of gluten, I refuse to eat it just to get tested. Everyone just tells me that it's in my head.
In any case, I'm very grateful to see the experience of someone who has been off gluten for over a decade and living well! It gives me so much hope in the midst of all this. Thank you.
I resonate with your story so much. It’s awful being told we’re crazy when we’re really searching for help.
My doc made me go gluten free before I got the intestinal biopsy so my results were skewed. But I was happy anyways because I finally understood what was wrong with me.
Stick with it and you will inevitably get better ❤️🩹
The neck pain , shoulder pain, blisters on the back hairline. Sometimes itchiness on the scalp. Headaches nonstop and the brain fog thinking I was ADHD! Not to mention the low moods and debilitating anxiety! Achy joints and nausea. Skin crawling was the worst out of all Of it. I thought I was loosing my mind! Thanks for your closely relatable video! I’m so surprised this could be it since the rest of my diet was so good, but I would have gluten once or twice a week.
I hope you find some answers soon ❤️🩹
Same here
Thank you so much for sharing! I was diagnosed this morning and your video made me break down. I've had so many of these symptoms. My anxiety has become unbearable and my dr recently prescribed me Adderall for my "ADHD"... I really hope going gluten free helps me in the way that it has helped you.
I’m so glad you found it helpful.
Careful with the Adderall. That stuff ruins lives
These were my symptoms combined with a car accident injury with my hip… used to have a cane & wheelchair things were pretty grim before my hip surgery and celiac diagnosis. Spent so many school years even in elementary school in pain and nausea… if I had only known I wonder if I would of graduated college
I’m so glad you received a proper diagnosis. And it’s never too late to go back to school. Good luck 👍
Wow....I cannot believe it. I have every single one of these symptoms. I was already in shock how similar your story was and then you said insomnia! I've been suffering with all of these for a year. I've been treating for so many things that has not been helping me. Taking a ton of antihistamines for chronic hives but it's not helping. I've just been dealing with the insomnia, fatigue and mental issues... after trying to find causes, seeing several specialist I just gave up and I've been taking meds to help with different things but I hate taking so many meds. I'm going to look into getting tested for celiac diseases!!!
That’s great you’re going to keep searching. Don’t give up! Finding a proper diagnosis takes time. Good luck and keep me posted on your results
@@NaturallyKarli Celiac is Colon cancer ?
Thank you for sharing your experiences. One thing I would suggest is to not label people by their diagnosis. I do not want to be called a celiac just like a person with multiple sclerosis does not want to be called a sclerotic. I know it is easier to talk in short hand and use celiac and it is commonly used in the medical community. But I think "person who has celiac disease" is much better.
That's what I had intended to say. Sorry for any confusion. I hope the video was helpful in ways it was produced for: )
Thank you so much for this! The itching and welts are maddening!
Truly! I’m so sorry you’re going through that. Placing ice packs on the skin always helped to calm the itching. Hope you find relief soon 😢
Yeah it’s like one freaking grain of this weed it just sets us on fire. What I noticed is that they like to travel around the body like if they all if the rash all came in one place well it’s gonna go like split into a bunch of spots and like go all over your head that’s what’s happening to me or they would go on my eyebrow or they would go on my back or they would go on my foot. While it’s doing all that it feels very creepy it’s like what are the creepiest experiences you can experience and all this is while you’re being gluten do I mean this is why it never goes away the rash is basically your body ejecting the gluten! Now that I finally stayed away from it. I finally started to feel relief. It’s like people are looking at me I’m like well did you stop burning yet and I’m like no because you keep putting gluten in everything! And I mean everything since I’m familiar with how gluten free stuff taste it taste exactly the same. Many of us wouldn’t even have these symptoms if they would stop injecting it basically I’m surprised it’s not in the air.
I don’t even wanna leave the Smiley because Smiley does not convey the terror that this rash has.
The other reason why it hurts is because some rash is actually hurt to heal and this one is so sensitive it hurts to take it off of your body. Like psoriasis it doesn’t hurt to heal it this hurts to heal it! That’s how sensitive it is. And like she said the brain fog is terrible or brain innflamation. That’s what we’re going to find we don’t have celiac disease society has stu. disease!
You wouldn’t even have the symptoms if it wasn’t in everything that’s the point. It’s like it’s like you might experience some Once or once a year a day where you were like super itchy you just took a shower and it went away but since it’s an everything wow you experience the crap 365 days a year.And that’s what I would call it I mean my pillowcase was just full of friggin blood because the was all over my ears I mean I was in so much pain I could not use my face because the rash will go on my face.It’s like one of the only rashes that hurts to make it go away it sounds strange yeah because the rash is like I want to stay here I don’t want to be moved.
@@NaturallyKarli I mean you wouldn’t even have to go gluten-free you would be able to just eat gluten but about this terrible rash it’s a put it in everything it’s a mayonnaise it’s a pills it’s in Play-Doh it’s on envelopes. It’s in soups cranberry sauce mustard ketchups make up lotions shampoos deodorants I mean no wonder why you can’t even go have a tiny cupcake that has it in it!
And for me sometimes it wasn’t a splotch. It would divide itself and travel all over my body and its parts we just burn like hades. I mean people thought I was on fire while I was walking into the store and I was I kept trying to drink water. And sometimes my entire body would feel like I have this pressure my head would feel like I had on a hat while I wasn’t wearing a hat I will have lightning across my face as I fall asleep.
Thank you so much for sharing this. I have had the hardest time figuring out what is going on with me. Your story sounds so much like my own with how you describe your skin breakouts. Can you tell me, please, what kind of doctor you saw to get your diagnosis? Dermatologists have been not helpful and I don’t know if just seeing a normal practitioner or a specialist type of doctor would be better.
Thanks for sharing hope. It hurts so much some days, not knowing the exact reason is very frustrating.
Hi Mariah, Don’t give up your search for the proper doctor! An immunologist who also happened to be an allergist finally made the autoimmune connection with my situation. But a PCP would also be a great place to go as they would be more familiar with your history (unless you don’t have one yet). Keep me posted on your search. Take care!💕
I'm 14 and got a blood test to see if my lron tablets where working and my doctor had to take more blood from me because he thinks I have celiac disease I find out on Friday I'm really scared that have it and just want to know how to switch gluten free diet
There’s a good chance you don’t have celiac. It’s fairly rare. But if you do, a gf diet is the best thing that everyone happened to me. It forces me to take great care of myself and only eat healthy foods that are going to make my body thrive. It’s easier than it seems. It just takes practice. Let me know how it goes! Good luck 🍀
Diagnosed May of 2019 with Celiac and the DH followed due to the rash etc. Leaky gut was also a factor. It's been like the layers of an onion. My current layer Lyme. Such fun 😵💫
I went carnivore like Mikaela Peterson and did my healing with protein. Also NAET was a game changer.
The Gluten Free Society with Dr. Osbourne is also a place for healing and answers
We are very fortunate to have so many celiac and gluten-free resources at our disposal these days. When I was diagnosed in 2010 it was a big guessing game as to how to improve my health status. I'm glad you are feeling better. And just for reference sake, all protein originally comes from plants due to their exclusive ability to convert nitrogen through photosynthesis. Literally all whole plant foods contain protein 👍
I was diagnosed at age 44. I did experience extreme constipation. I also had the itching. Once I got diagnosed, I went GF immediately. However, over the years, as I have gotten older, the itching got beyond painful. I was diagnosed with DH last year, and have been taking Dapsone ever since. That medication helps, but it can do a lot of damage internally. I am deficient in potassium, and because of celiac, I have to take many vitamins and supplements since my body does not absorb nutrients from food very well. To add, my arthritis has flared up big time and I am going to have to be checked for osteoporosis, and the shin splints have been horrible. I have not had shin splints in years, and I do not even jog or run.
Dapsone caused me to have severe anemia so I stopped taking it after several months of due diligence. It just wasn't worth the side effects. All of my deficiencies, shin splints, migraines, blisters, itching, insomnia, etc. went away after years of healing my gut with whole plant foods. I don't let anyone else make my food, including random manufacturing companies and restaurants. Try probiotics. Those helped me a lot 👍 Hope you feel better!
My doc says I don’t have the gene so it can’t be celiac but gluten intolerance shows up in a similar way.
Good luck with whatever the outcome 😊
Goodness Karli, I can sadly relate to what you must have gone through! Your symptoms and struggle sound very much like what actress Jennifer Esposito experienced, until finally getting a proper and correct diagnosis. My father was of Ashkenazic Jewish decent, and my mom is Portuguese. I was always so embarrassed whilst changing for gym class, as I had no idea that it was dermatitis herpetiformis on my buttocks, from all the bread and cereals that I regularly ate! It sadly still took many more years of unnecessary struggles, physical and especially emotional, till a doctor finally sent me for an HLA DQ gene test, then a biopsy, and realized it was Celiac disease.. Thank you!
Wow, thanks for sharing. I'm glad people are finding relief with their symptoms and coming to terms with the irreversible changes that are taking place in our bodies. This is a very tiresome and confusing illness. But we can take care of our bodies to reduce its impact on our lives. 💜
@@NaturallyKarli Tiresome and confusing indeed! We of all people understand it’s a lifelong “lifestyle & diet” for us, constantly and daily being vigilant and meal prepping to avoid accidental exposure, and social events are generally a challenge! Thank you so much for what you are doing in helping so many to understand that we can do our part at giving ourselves the best chance to heal quickly, and thrive, and enjoy life😊🍇
Well put. This is truly a "lifestyle" one would only fully understand and appreciate after living with all its unique complexities.
Did or does anyone suffer from face flushing due to celiac disease or gut problems?
I have celiac disease and rosacea (type 1 face flushing) and I’m hoping sorting my guts out will reduce my flushing.
Has anyone experienced this??
My daughter gets flushed and hot on her stomach after gluten, and I have constant red face .We are exploring celiac along with other autoimmune illness.
@@strangertobluewater Hey! Mine is daily flushing in very situation. Not particularly after eating gluten. Iv been GF for ten years anyway and my flushing hasn’t improved, but I also believe it’s stemmed from my gut problems. It’s been proven that a high percentage of people with rosacea have an autoimmune disease. I will be using a naturopath soon to help me with my on going gut problems, testing and diet
@@adamsmith7405 I think food sensitivity testing is key. I wish you the best in finding answers!
I've had this exact skin condition for many years. I gave up gluten 8 months ago totally not realising they were linked and it nearly completely disappeared. I haven't had a diagnosis yet for celiac but I've been told to eat gluten for 6 weeks to test for it. I also read that everyone with DH is celiac so I'm now very sure I have celiac disease. Just a shame I'm being forced into eating it for 6 weeks when I know its destroying my system.. Gobsmacked as I've been trying to find this skin condition for years
DH was one of the most difficult symptoms I experienced while recovering from celiac. I whole-heartedly hope you find a lasting solution for your condition because I remember how much this impacted my quality of life. It is a shame medical personnel require patients to ingest gluten prior to testing. My antibody levels were testing prior to the gluten being removed from my diet. They typically ask you to eat gluten prior to the endoscopy exam as well, but the clinicians decided it was too dangerous for my level of severity. I guess there are exceptions. Are you receiving the antibody test (bloodwork), or the full endoscopy/intestinal biopsy?
Thank you for your reply. @Naturally Karli I have done the blood test but tested negative for celiac apparently.. My doctor said he reckons I'm gluten intolerant but not celiac and that the skin condition could be DH but wants to test for it when it gets bad again. I'm not sure if I ate enough gluten prior to testing. I do get all the symptoms after eating gluten including the skin rash. Not sure what to do next.
I experienced joint pain too! Sometimes I still have issues with it even after being gluten free for around 12 years now
Wow, me too! I'm actually seeing a PT right now for the joint/muscle issues in my neck. So frustrating! Thanks for sharing
It also took me about 3yrs i had the blistery rash and still do its never really fully gone away even though im careful not to eat gluten i also because of the celeac have b12 aneamia and have to have injections every 3 months for life ive been diagnosed 14yrs my symptoms were itchy skin,my blood not been right,brain fog,not diahorea but going to the toilet up to 15 times a day,and at the end been sick alot,they were trying to say i was annorexic and it was all down to the celeac
I’m so sorry you had to endure that. My B12 always seems insufficient too. I wonder why our gut doesn’t return to baseline after successfully removing all the gluten
Tiredness too
I get rashes under my breasts and usually swtches sides each attack. High blood sugar of 190 up sets it off too. Same symptoms. I have terrible pain. I also have migrains. I also got that bullseye tick bite on my back in Kansas about 16 years ago. My clinic said they checked for lyme disease but I beleive they lied. I want new tests performed on me for allergies and diseases I know Im experiencing. I've got something pretty bad attacking me. And have really no primary care. My clinic has dropped the ball on me and I need some serious care! Now!
I’m so sorry to hear you are suffering with this.
It never occurred to me that high blood sugar may cause flare ups! Thanks for sharing.
I hope you find a better PCP soon ❤️🩹
My daughter's symptoms are same as you are telling 😢she got diagnosed with this disease seven months ago ..she has been facing it for almost two years... severe cervical pain .she develops then numbness in legs or Arms ... blisters and pimpled skin on her face...and stomach pain the whole night ..even if I avoid sometimes she eats.. gluten products..I try my best to recover kindly guide me ..I'm really nervous and stressed out.
I'm so sorry to hear about your daughter. This is a complicated disease and everyone experiences it a little differently. It sounds like you are doing a great job helping her cope. Just being there for her and offering unconditional support goes a long way. Best wishes ❤️🩹
Just.found your video.. I have crohns and have been dealing with a flare for a year and finally found out I also have celiac. We share the same rash.. my skin is finally healing .. and that joint point is finally left , I wanted to know how did you find sleep? I still can't find it, I sleep.mayne 4 hours with a sleep aid and my head is still so loud.. You are the first person on you tube I can relate to.thanks for making the video.
Hi Bridget, I’m sorry to hear you are having difficulties sleeping. I still currently struggle with this to some extent but overall it has greatly improved. I recommend practicing good sleep hygiene. Having a solid nighttime routine helps. Let me know if you have any questions!
I have all of what was mentioned except the blisters.
So sorry to hear that
thank you for this video! i needed this
You are so welcome! Autoimmune conditions are so common these days. I love being able to help spread awareness!
Do you experience similar symptoms as I cover in this video?
@@NaturallyKarli i do indeed, curretly trying to get rid of what my GP believes is gluten rash before i go on a 4 to 6-week gluten diet so I can be tested for coeliacs disease. iv suffered severe chronic pain for over 6 years now and after 3 spinal operations, it still persists. thinking it was gluten this whole time but it's only just shown itself in rash form after eating seitan... will see for sure in a few months. I'm vegan already so trying to figure my meals is the next battle.
I can completely relate to your struggle with being a GF vegan. It takes some getting used to, but soon it will be second nature. Hang in there! I hope the removal of gluten will clear up both the rash and the chronic pain. After 11 years being GF, I still suffer with these issues if I don't take care of myself. Symptoms seem to come back when my sleep and stress management are poor... or if something was in my diet that shouldn't have been. Good luck and keep me posted on your outcome!
@@NaturallyKarli Thank you for your kind words and all the wisdom. do you have insta? im more active on there and would love to keep updated on you n your journey
This is so sad, I felt better (bloating stopped ) after two days. Problems with sleeping never went fully away.
My sleep issues are ongoing as well. I wonder where that comes from…
Maybe histamine intolerance or too much iodine in the diet
It was one of the most painful if not the most for me and I’m an Aquarius Scorpio. Leo Rising Vedic Capricorn. All alpha placements but this rash. Was the most painful lol
The rash was horrendous in my experience as well! Do you have dermatitis herpetiformis also?
@@NaturallyKarli yes
@@NaturallyKarli people keep saying go to the hospital 🏥.. how when it’s the second most painful rash known to man
@@NaturallyKarli it also don’t like mini temp change. Let alone dramatic. In just shocked how it feels like the WORST flu.
I would suggest making an appointment with your primary care physician. It sounds like you need some serious medical care. The sooner you can get them involved the sooner you will find relief @ZenithAstrology
I m 5.8 125 lbs exercise regularly and have almost all ofthese symptoms . I hate a thought of stopping bread . But I think I gotta stop
Give it a try for a few months and see how your symptoms change. But be careful to remove other glutenous culprits also. Good luck 🍀
Bloating like I am nine months pregnant, gas, belching, joint pain, neck pain, shoulder pain, hip pain, little blisters on my tongue….have not been diagnosed yet… went gluten-free four days ago how long before I may start to feel better?
Honestly, it took me years to start feeling better. But I was also eating a lot of processed junk and drinking alcohol most weekends. We’re all different in our time to recovery. Keep experimenting and let me know how it goes!
Omg this is what i experienced when eating gluten, self diagnosed when 27. Doctors didnt help. The pain is debilitating 😢
I'm so sorry to hear that. But I always like to look at the silver lining- I take better care of myself now more than I ever would had without this wake up call. Yes, I do continue to experience minor annoyances with my celiac symptoms, but they are easily managed with a healthy diet and lifestyle habits. Take care & best wishes!❤️🩹
@@NaturallyKarli thank you, yea celiac is no joke.Take care too!
Depression comes from Low serotonin which is produced in the stomach and of course the stomach is not that great with having silly disease so it’s also vitamin D deficiency nail absorbent all of this can cause depression and anxiety
The science behind the chemical-imbalance theory of mental illness has recently been retracted and disproven. But yes, I agree that gut health has a lot to do with our mental wellbeing. 100%👍
Very similar situation, diagnosed at 51 though, was diagnosed with ulcers when in the second grade so probably had it all my life, was diagnosed with several other things but treatment made no difference and sometimes made things worse, Dr are really clueless on this one
I'm sorry to hear you had been suffering with this for so long. It is a relatively new disease so yes, I agree docs can be frustrating on this front. But thankfully, we can do a lot of our own research these days so I am grateful for that: )
My symptoms are: body temperature fluctuations, brain fog, acne breakouts that are slow to heal and painful to touch, lower back pain,
neck tightness, muscle weakness, chills at night, irritability and panic attacks. Though I take lots of vitamins.. lately I've been having
a hard time keeping sugar at bay and had a reaction last night from half a carrot cake muffin... regrets. I plan to go vegan for a bit to heal...
I’m sorry to hear you’re dealing with this. Vegan seems like a great option! Good luck 👍
@@NaturallyKarli I researched MSM online for healing the small intestines.. have you tried it before??
Yes. Supplements were a big mistake for me. I believe in healing the gut naturally with high nutrient, high fiber foods👍
Have you taken a look at Oxalates and the work of Sally K Norton, her book is titled, "Toxic Superfoods". Celiac symptoms have been found to be connected with an overload of oxalates.
Hi there, thanks for the comment. Our bodies actually manufacture more oxalates than we could ever obtain from food so that claim has yet to be substantiated by any credible scientific evidence. There are a lot of nutritional claims out there that really aren’t supported by data. But I would be happy to review any articles you have available on the topic.
I also have dermatitis herpetiformis aka Duhring’s Disease. I found out last year that, for some people, nsaids and iodine containing foods can cause the same reaction as ingesting gluten.
Really? I've never heard that before... it is a very interesting reaction, that's for sure. I'm glad we can mitigate the rash by avoiding gluten.
I have ulcers colitis and celiac disease
Wow, I’m so sorry to hear that.😢
I’m realizing my primary progressive MS was because of celiacs. I was told I didn’t have because they tested me when I was a year gluten free. I never imagined I did because I had zero go symptoms. Instead it presented as gluten ataxia AND neuropathy. Functional medicine my friends.. it’s the way to go ♥️ PS Today is day 26 of the Wahl’s Protocol and neuropathy, arthritis…gone. I can lift my arms lolol … and drop leg is coming back. Migraines are gone ♥️
I’m glad to hear that you found relief from your symptoms. This is a long and lonely journey for many of us ❤️🩹
That is what I'm dealing with possibly MS I have lesions and I have horrible stomach problems is so awful 😖
Crazy. I have been having realll sore necks and cant sleep. I went fully dairy free with some gluten and got my life back but when i eat a good amount of bread i notice big fatigue. Sleep has beem terrible. I think its bacteria at the route of our problems. I noticed celery juice is quite impressive
Hang in there, Jonny. It truly is a journey figuring out what works best for our body
@@NaturallyKarli im wondering are we all low on stomach acid? I heard all allergies are protein allergies... over time eating bread it must use up all our acid?
There are so many theories out there. I haven't been able to confirm anything yet.
I’m having troubles and I came across your channel. I have high blood pressure and my doctor has put me on carafate and Prilosec. My stomach has gotten better however there are days that my ears and my face get so hot it drives me crazy and other days my face is cool as a cucumber. I was just wondering if the gluten allergy had anything to do with this. I dont get blisters or anything just the pure hotness. Do you think this is because of a gluten allergy? Thank you.
It’s a possibility. Sounds like some form of autoimmune reaction. You might want to research the damage prilosec does to our gut. Autoimmune diseases typically start with some form of leaky gut syndrome. These drugs usually provide intestinal relief while causing long term problems. If you think it’s a reaction to gluten, you can ask your doc for a blood test to rule out celiac disease. Good luck ❤️🩹
Hi! I actually have recently been exposed to cross containination a few times. Yes I have had the high fever as well. For me unfortunately I had to have a few Fry's of my daughters so I know part of cross containination was that. I can't remember if I talked with a nutritionist bwcuase was so long ago but I did talk with another lady who has had it for years and was a wealth of knowledge saying h need to find a Dr who is gi speaclizws in celiac.
Thank you so much for this video, very informative.
Do you still experience those joint pain ? especially neck pain? If not how long did it take for these symptoms to go away?
Have you had some kind of stiffness in your muscles?
TIA
Hi Tia! These are such excellent questions. Yes, I still experience neck pain. But I notice that the closer and longer I adhere to a high nutrient (low inflammatory) diet the more the pain diminishes. It's particularly noticeable during days when I am sleep deprived or standing at my computer hunched over all day. Turmeric and ginger root have the greatest purported effects on reducing inflammation. But I recently started using a Theragun on my achy muscles and this has been a total game changer! They are expensive, but well worth the investment. The muscle stiffness and soreness also correlates with my diet and sleep behaviors, stress as well.
@@NaturallyKarli
Thanx for your reply. Theraguns are really expensive, so you may have trigger points in your shoulder muscles too, I do have those, maybe someday I try trigger point injection.
I though changing the diet and going Gluten free will cause all the pains go away ... seems that's not the case :"(
Hope you get well soon
Huh, I’ve never heard of those. Sounds risky 😬
@@NaturallyKarli
Yup, They inject Botox into trigger points! risky and scary too ...
Thank you!
You’re so welcome! Are you experiencing similar symptoms?
Does celiac cause inflammation my upper shoulder and chest have lumps
Absolutely Celiac causes inflammation. But all diseases do… sorry to hear about your situation. Best wishes
Thank you, I’ve had all of these. My ears and cheeks will even get super hot and red
Yes, I experienced this as well. Using cold ice packs helps to reduce the inflammation and redness. This would usually occur after ingesting gluten for me. Are you still suffering with these symptoms?
@@NaturallyKarli it hasn’t happened in a while but recently I had like 4 cookies with hella gluten and I have SEVER episodes. Honestly not sure yet if it’s related but it’s definitely alllll the symptoms. I get headaches, bloated, cold sometimes even run a low fever, shake, then I crash after about 30 minutes get super tired, left exhausted, and feels like my brain don’t work. I usually feel better if i am eating no gluten but the recovery takes a week or two to feel “normal” again. - JUST noticing it starts after I’ve had gluten but I have a scope appt tomorrow so hopefully I find out. And hopefully it IS celiac.
Good luck with your appointment! Let me know how it goes
Could u recommend the best celiac friendly country😊
I’ve heard certain European countries are great for this but I’m not sure which ones. Sorry. Great question!
Does anyone else have advice on this?
this is exact my symptoms
Hang in there!
I suffer from migraines, and have tried so many things. I will have to give a WFPB diet a try. That being said, and maybe a little off topic from this particular video, but a genuine question. I am a macro counter and in the process of building muscle and losing fat after having my 4th baby. I need to meet a high level of protein so I do not lose muscle while in a caloric deficit. What are the best and highest sources of plant base sources in your opinion. Also, have you tried "Beyond Meat" products? I would love to see a review/hear your opinion about that brand in particular. I've heard good things about their products.
I actually am in the middle of making videos on each of those topics! Great questions. Congrats on your fourth baby, wow! I can barely keep my head straight with one, (but very much wanting more:). The best thing about eating this way is that you never have to consciously keep track of your macros because you are able to obtain them from a variety of sources that contain a perfectly balanced amount of each carb, protein, and fat distributions required by our bodies. While with animal products it is the opposite. Most of those foods contain a lot of saturated fat, some protein and very little carbs.
th-cam.com/video/1KBx7mEZKUI/w-d-xo.html
Here is an earlier protein video. You can find the best sources in this one.
@@NaturallyKarli Thank you!! I will check this video out.
@@NaturallyKarli I think we've been taught to be afraid of carbs in the western world. I need to fix my mindset on carbs.
I completely agree! I will be focusing on carbs in an upcoming short to reach this point with my audience. You'll have to let me know if I get the message across.
Any cream for this dermatitis?
Not really… sorry. I used bags of frozen veggies to stop the itching and cetaphil to moisturize.
Thank you
You bet!
What is DH?
Dermatitis Herpetiformis- a nasty itchy blistering skin rash. It’s another autoimmune response to gluten
Hi Karli, I found this video to be extremely helpful. I am so very new to all of this. My diagnosis came just this November so I have only been dealing with this for 3 months. However it seems I have been dealing with the symptoms for well over 20 years. Headaches/migraines for at least that long. Up until 7 years ago I was a night auditor so I thought my sleep habits or lack there of was all part of having the job I had. Lastly I am one who had a ton of problems digestively. I went through a Celiac Storm. In September I started having bathroom issues so bad I could no longer work. Brain fog was so bad. My energy gone. I was so close to loosing my job. Depression and anxiety both hit me very hard. I even had PVC's which I believe manifested through this whole ordeal to get me to see doctors. Now that I have been gluten free for 3 months I have only had 2 headaches, bloating and brain fog and it was due to being "glutened". I will continue to look at your other videos and learn from you. Thank you for doing this and making people like me not feel alone!
Awe, Shandi. My heart goes out to you and all the distress you are experiencing. I'm so glad these videos are helping others work through their diagnosis and symptoms. This is an awful sickness BUT it can be managed with due diligence! I find that to be a wonderful silver lining. Hang in their and reach out if you need anything at all
I'm not sure if you are asking Shandi or myself, but I do still have flare ups when triggered by environmental factors or gluten contamination. It seems our immune systems mistake a lot of "normal" things for foreign invaders after our gut has been so dramatically compromised. What's your story? Do you experience celiac symptoms?
I am starting to feel much better but getting glutened is no picnic. I have officially been diagnosed Celiac. It's been extremely difficult wrapping my head around it. 🙃. I'm trying to learn as much as I can. I'm getting a scan on my bones to see how much malnutrition effected me. A special blood panel to see were all my vitamin levels are. Lastly I'm going to my cardiologist to see if my heart is at risk/symptom of Celiac.
Have you had the intestinal biopsy? That will tell you a lot about the current state of your absorption capabilities and how much damage has occurred. Hope you feel better soon!
Hi, did you have degree in nutrition ? I want to study nutrition
Yes I have a certificate in plant-based nutrition from T. Colin Campbell's institute. I was in a dietetics program for 3 years before recognizing their curriculum was funded by major food companies. I also have a degree in psychology, while I am currently studying in Wellness Forum Health Institute to become a Certified Health Educator. I highly recommend pursuing your educational potential🤗
My mom developed an allergy to gluten in her her twenties. Now I'm 23 and I've been getting facial rashes whenever I eat gluten. It took me a while to realize it wasn't just really bad acne, but when I eliminated gluten, the sores cleared, and then when I ate gluten, the sores would reappear
So common! Thanks for sharing Robin. Glad you’re feeling better
I have significant gluten intolerance (all these symptoms and more) but always get a negative blood test. I've never had an endoscopy or genetic testing. Doctors just tell me not to eat gluten because that's the only cure anyway.
Has eliminating all gluten-containing foods been helpful?
@@NaturallyKarli It has helped with a lot of the digestive issues. I was also diagnosed with ME/CFS and fibro, but that's a whole other beast.
I'm so sorry to hear that. I hope you have found healthy ways to move forward with your health conditions.
this
I have this on my faca on my neck on my arms.. im fed up
Have you been tested for Celiac?
Me to forget even trying to have a beard
The rash is also so powerful that it knocks you out it’s that painful like you just want to go to sleep because that’s the only time you don’t feel it until you actually do. So don’t wake up
@@NaturallyKarli is also so powerful itching causes pulled muscles. That kept happening to me
“It took me three years to get diagnosed.”
Me - It took 35 years to get diagnosed…lol
This breaks my heart ❤️ So sorry to hear that… hope you’re feeling better.
Neurological symptoms (ataxia, loss of short term memory, poor balance, ringing in the ears, photophobia, emotional volatility, etc etc etc) are B complex deficiency!!!! I had CD. I had literally every B complex deficiency in the book and in severe form (with the sole exception of the butterfly rash, absent almost certainly because my photophobia was so bad I never went outside during the day)' ataxia was one of the worst. I could not walk across flat unbroken pavement without continually tripping over my own feet!
I started taking B complex. 100mg/day did nothing. My urine was still clear like water. I upped the dose 100 MG/day until my urine turned yellow again, held it at that dose for a few days, reduced it 100mg/day and it stayed yellow kept it there, if it turned clear went back up and so on.
Within two weeks all about B complex deficiencies started to improve rapidly and by the end of the third week when my urine finally turned yellow at 2000 MG/day all deficiency symptoms had totally disappeared. In fact all the areas that had been problems were now working far better than ever before. I was not only back to normal function but considerably better.
Celiac ataxia is due to being vitamin deficiency which can be corrected in very short order by vitamin supplementation without having to wait for the intestinal lining to recover!
I had been 20% below normal lien healthy weight but had only recovered a small part of that before my vitamin deficiencies were gone.
In addition I strongly suspect that the vitamin supplementation (I also supplemented all of the vitamins for which I had deficiency symptoms) enabled everything including the lining of my intestine to recover much more quickly than normal. (Total elimination of all processed foods probably had a great deal to do with that because it is the only way that you can reliably exclude all gluten)
Doctors should stop listening to all of the garbage spewed by pharmaceutical representatives and start thinking VITAMINS! It's not "the most expensive urine in the world", it dear God is one of the most effective therapies in the world!
I’m glad you found something to resolve your symptoms. Thanks for sharing!
jesus you are beautiful ! thanks for the info!
Wow, thank you!
I'm listening to your symptom list and going "tick, tick, tick, tick, tick...."
Decades of chronic muscle pain, stomach issues, depression, anxiety, insomnia and eczema. I'm waiting to get my tests. All I can do is laugh and shake my head if all this bullsh!t was from 1 thing this whole time.
Those were my thoughts exactly! But I was relieved to finally know what was wrong with me. Good luck!
@@NaturallyKarli Yep, just got diagnosed as celiac. Thank you for your video. Helped me realise how important this diagnosis could be for me and commit to the full testing.
But what will a doctor do? Don't you have to change your diet?
Yes. A doctor is helpful to confirm the diagnosis
Its interesting that the blister is HOT. That's exactly how a cold sore feels before they even erupt.
Really? Hmm. I’ve never had a cold sore. I suppose anything that causes inflammation can generate heat
Nothing wrong with me with this disease no ichy and yup that's it
Okay… lol? I’m not sure what you mean by this
Your voice kinda sounds like laura prepon's voice
Who's she?😊
@@NaturallyKarli she was on That 70s show shes the red head😊
Dude you get hip pain ?
Only since I tore my labrum…