My Celiac Story - the Road to Diagnosis and Beyond (Refractory Celiac)
ฝัง
- เผยแพร่เมื่อ 5 ม.ค. 2022
- Discover why I created this channel and listen to how I got diagnosed with Celiac Disease - and Refractory Celiac - plus some of my struggles along the journey so far.
Thank you for this. Just learning at 57 that the wheat allergy I was diagnosed with at 3 doesn't explain the skin rash- and until today I'd never seen a picture of the exact rash I sometimes get on my hands, and sometimes even more places. What an eye-opener, that I can "check all the boxes" on this, not just one. Let the learning and the change begin! ❤
I’m sorry to hear of your journey gut problems just go round & round wish the best
As a Functional Medicine Nutrition Counselor and a Celiac I can attest that there are litterally hundreds of glutens and gluten mimicking proteins. Corn contains Zein and Rice contains Orzenin. Look up the name of the proteins for Barley such as Hordein. So tell me why they only test for gliadin? Why?
Dx'd two years ago. Initial improvement after GF diet, serological, histological. Diarrhea mostly gone, began to gain weight. Thought I was finally on the healing road. But a few months ago, weight began dropping again. Diarrhea returned. Zero change in diet. Really at my wit's end. I want to be positive, but the cycle of optimism/despair is wearing me down.
Hi Jack! Ugh I’m so sorry to hear that - Celiac disease sucks. I know it doesn’t make it go away but know that you’re not alone ♥️ My symptoms got better after diagnosis then I’ve been in that same cycle ever since - gets better, gets worse..it is exhausting and most people don’t understand the gravity of it. There are more and more studies now showing over 50% of people with CD still have symptoms on strict gf diet - so it’s not your fault. Beyond Celiac is also putting a lot of money and resources into funding treatments for a cure (they say by 2030!) I know I get very frustrated and down but talking with others who are going through a similar journey always helps me feel less alone and more validated. I hope I can help be a support to you and that this channel is comforting and useful! I’ll be starting some twitter spaces soon to have live chats as well as a discord that I hope you can be a part of 🤗
I'm a senior and have been vegan for over thirty years for ethical reasons and gluten-free for around twenty years, not by choice. I wish you continued improvement with your health. Thank you for sharing.
I had to start eating meat as well after a celiac diagnosis. My partner has nut, soya and pea allergies, and most vegetarian products contain either wheat or those allergens, so protein was near impossible to do without meat.
I know how it feels to try and do everything within your power to improve things, and it not solving the problem. It's frustrating and makes you lose sight of hope.
I had bad psoriasis for about 10 years and doctors didn't seem to be able to understand that I didn't just have psoriasis, but it seemed to behave very differently to other people who had it. It was extremely inflamed and would constantly be itching despite the medication they would give.
After several months gluten free, the psoriasis has nearly gone and the small bit that's left is unnoticable. It's unbelievable really, I tried everything under the sun until I cut out gluten.
That said, I seem to be lucky, but I hope something turns up for you for your particular difficulties.
I understand your frustration. I was diagnosed with CD in 2002. Never heard of it before, went on a GF diet, never felt any different, so questioned whether or not the diagnosis was correct. I July 2015 I ended up in ICU, 102lbs, intestines were like mush, had surgery for fissures because of the chronic diarrhea, blood transfusions, iron infusions, then on a PIC line for 3 weeks and prednisone. Immune suppressants are not for me!! 4 years ago, on a 2-wk Alaskan cruise, I spent 5 days in the clinic getting IVs of nutrition. Then when getting home I was in the local hospital for 8 more days of IV nutrition, which upon my release, they told me that I had RCD type 2. Since 2015, I've been on a strict GF diet, I'm 98% off dairy, and 95% sugar. My diet basically consists of meat, potatoes and veggies, eggs and fruit. As I sit here writing this, I've struggled lately with dizziness and weakness, diarrhea and fatigue. I feel as though I need some more IV nutrition but am not interested in going to the hospital at this time (not in this world right now, anyway). I've spent 1000's of dollars on vitamins, IV's and vitamin A &D shots, blood work analysis, appointments with the ND, plus medications for hypothyroidism prednisone and Imuran, and Budesonide, shingles - which I got in my face and head last Jan '21, which has turned into PHD Post Herpetic Neuralgia. All not fun! It's been a long journey. I also have alopecia and lost all my hair in 2015 after being so sick. Life is challenging. I don't like to sound negative, but it's frustrating and sad.
That is really rough Barbara, so horrible to have to be dealing with all of that! I’ve heard many celiac doctors say one thing we can do is complain more so that more people understand the complexity of celiac disease so I hope that gives you comfort in complaining! I hope you have a great team of doctors that are doing everything in their power to make your life as enjoyable as it can be. Beyond Celiac has an open enrollment for ambassadors now and has been a great help for me in feeling like I have a community of people who are knowledgeable and understanding. Reach out anytime! I’ve created an Instagram page as well as a twitter to connect too.
I presume you've already considered this, but you didn't mention it in your comments - have you tried probiotics?
Neurologist diagnosed me ,gluten ataxia .he thinks I had coeliacs a long time .took me to not be able to walk to find out ..anxiety ,brain fog , vertigo ,stomach issues ,migraine of the chart . Still struggle with migraine but not as bad
As I was reading the comments so many things have been my experience. I turned a corner when I found a NAET practitioner here in San Diego. Game changer!
Thanks for sharing helps everyone in our community. It takes years to get remotely normal after diagnosis. Most Celiacs have reduced or compromised microbiome composition and this will result in multiple food intolerances. As things heal you will slowly be able to add things back in. It took 6 years for me to be able to enjoy small amounts of eggs, corn and nuts and seeds. What a joy it is to have these sometimes. I still have a small list of food i am working on but the point is to be patient. Keep testing foods routinely and don’t go too long without as this makes it harder to bring back. Small amounts routinely! Finally I will tell you something that every Celiac should be told when diagnosed. There is no such thing as a gluten free diet. Gluten free foods are allowed to contain small amounts and they do. Gluten test kits do not match the human immune system. It’s all designed to help us have a low gluten diet and be sane.
Quit trying and thinking that you will conquer it and get on with being the best you can be. You will be happier. I try to eat a nutrient dense diet and only allow small amounts of packaged food. It’s the best we can do for now. Even if you are refractory you still need to be happy and enjoy your life. I believe you will improve with time and gluten reactions will become less intense. Hope this helps.
Thanks for sharing.
Are you aware Salt & Pepper has huge potential for cross contamination?
The way these products are transported around the world are usually in the belly of Grain vessels that they do not clean out. Some of the cheaper disposable grinders now reflect 'may contain' statements, hard to see but i found on it reflected on my 100% Sea salt & my pepper corns containers!
Good luck
I appreciate this video so much! Amongst my family and friends I am queen of the medical issues. I have been feeling absolutely horrible for years!!! What is worse my husband has this statement he always makes where he tells me "If you think you all the time you don't feel well then you won't feel well!" It's so damaging to hear that when you have so so many symptoms. Don't get me wrong I love my husband but he seems to think you can control what happens to you. I was diagnosed with Hoshimoto's disease 10 years ago, then to make matters even more complicated Fibromyalgia 3 years ago. All the symptoms of both of those disease with the painful joints, the foggy brain, the loss of balance and hair loss and the horrible debilitating constipation, the restless leg syndrome, and the constant feeling as if my body was starving even when I ate! I have so much fatigue, I don't sleep, I always have this drawn unhealthy look as if I am being starved to death when I keep enough food in my house to feed five families. I just don't know what to do! not to mention right in the middle of it all I'm hit with menopause and the sweating and then I'm freezing! So about a month ago I got this sore spot on the back of my thigh that was the size of a quarter and it was red and hurt and then it started to itch like crazy so I scratched and all of a sudden tiny little water filled bumps rose up and became pus filled! I notice everytime I would drink or eat while this occurred I felt as if I needed to vomit! My doctor said it was a Fibro flare up! but that didn't explain enough for me. I realized that on the back of my leg there were about 4 other scars from this same rash having occurred before but because of going through so much with the other Autoimmune diseases i didn't notice it. It wasn't until I saw a picture of Herpetiformis dermatitis and I took a quiz about Celiac disease and the only symptom I didn't have was the constant runs but I had the constant constipation! Also I was told being B12 deficient was also a factor and my blood test showed my body barely makes B12 and I had to be given shots for the rest of my life. I am all messed up! but I will be going to get tested for Celiac Disease!!!!! Also, when I was diagnosed with Hoshimoto's disease it was found that I was born with bad gut enzymes so all these things run together. I appreciate your story. I wish people could understand these symptoms are not all in our head!
I was diagnosed with all the same issue you are having in 1996. Really nothing could be done but I knew I had high inflammation so I went on an anti inflammation diet aka Keto diet. Since my food intake was different and I kept a
record of intake and then as my insulin leveled off I tried fasting. (After you cut out sugar/carbs and adjust to intermittent fasting and then to the One Meal a Day - you can find good info on youtube) it is easier to see what your body is doing in
response to food. (I wasn't even trying to look for food issues, it just happened)
I broken a 48hr fast by eating some gluten rolls and my feet/hand muscles became horriblly/painfully contracted for about two hours . (about 90 mins from
time of ingestion). I could not believe it so in about 4 weeks later fasted again
(24hr that time) and went to the same restaurant and ate 5-6 delicous gluten
rolls - same reaction. Also when I went on keto migraines eased off but when
a couple years later I ate some rye crackers and also happened with Cheeze Its (both eaten early evening) migraine the next morning.
Anyway, doctors can't find anything. I do believe that Chronic Fatigue/Fibro is
mainly caused by gluten and you'll have to do this system change yourself. I know the frustration, I 'm 74y old next month so have had these problems for the past 3 decades. I don't look ill and look younger than others my age. It is hard
for me to participate and people just don't understand. I PTL for my loving husband. He doens't really understand it either but tries. Please don't give up.
Get on youtube and learn how to do the gluten diet. Listen to some upbeat or
favorite music on earphones and walk. Start at just 10 mins and gradually increase the time. It is physically and mentally important. Look to the Lord
God Creator who loves us for that necessary strength and determination. You can do this. I always compare my circumstance to the suffering of others and can see where things could be much worse. There are so many ill and homeless but we have a home, husbands and a computer and good, strong people out there that are looking for answers for us. :^) Many blessings and success, pb
I forgot to mention that I didn't find out about the Keto diet until about
2018. I've also been taking many supplements over the years that helps with inflammation. Fish oils, (Krill is best) cucurmin , GLA, ALA , CoQ10 and many others that you can find info on youtube. However, pain etc has really been better after the gluten free diet. :^) Blessings, p
2018 Marsh 3b/3c. 2022 Marsh 3a and last month I receiced the following statetement: gastroparesis, incontinent Cardias, eosinophila with chronic duodenitis.
My diet has been : raw meat, white fish, salt, olive oil, water, lemon and coffee.
I was diagnosed with lactose intollerance long time ago and I almost removed it from my diet 10 years ago.
I then took the fructose and glucose test and in both i was intollerant.
Now i have vitamin d, folate, B2 and most likely other deficiencies but at least with the carnivore diet I am in remission.
I have noticed that poacee/graminacee family trigger the same autoimmune reaction.
Reversed my homocisteinuria, my nerve damage ( Babinski sign and with the MRI the cerebellum has recovere)
Now I am left with zonulin/gas 65 and with the fatsoluble vitamin test and we will see where it goes.
I understood that celiac disease is like all the other autoimmune diseases just the beginning.
So sorry to hear of you problems. Have you tried Fasting? ❤
Thanks for sharing. ❤
Thank you!
Thank you for your video. I have been sick since early 2020 in and out of the hospital. I started noticing when I eat pasta and bread I would feel toxic. My body almost shuts down when I eat gluten. I wont be able to eat, throwing up all of the above. The fatigue is the first symptom I get. It washes down my body then the rest comes into play. I hope that you and everyone else that has this horrible diease the best in life. I'm happy that the cause of my endless sickness has come up and I can rest easy knowing that I am ok. After 3 years of this I thought I was going to die. Got scanned for cancer and the casual list they go through in the er and nothing came up at all. It was horrifying. Again, thank you for your amazing video.
Thank you
Thanks for posting your experience for others like myself with this curse. I haven't had the guts to do this myself. Pardon the pun. I feel like I'm always complaining, always irritatable and just feel like trash all the time. Been diagnosed now for 4 years but unfortunately the diet is too late. I'm refractory now, I was always being accused from the drs of eating gluten and that I should of been healing on the diet. Now I've developed Small Fibre and Autonomic Neuropathy. I was undiagnosed for so long that I now have permanent nerve damage. This isn't just a food allergy, it's torture. Hope you get better and find some peace. Thanks again for sharing your experience.
I’m so sorry you’re having to deal with that, celiac sucks on its own , you should not have to be dealing with doctors and medical professionals treating you that way. The national celiac disease foundation tells people in their training to complain more about celiac and symptoms so you are doing the right thing! Beyond Celiac is also doing rolling admission into their ambassador program which has helped me to feel less alone in this cursed journey. I hope my support lessens the suffering in some way! And fingers crossed we see a cure sooner rather than later!!
@@supportforceliac8967 hi lovely my brothers experience is similar to yours the whole of his gi tract from his throat to his anus was riddled with ulcers and inflammation he's cut out all dairy and sugars he's on a diet which I'll get for you if won't he's no inflammation and no ulcers now his profesor doesn't understand how this has has happened because its incurable,he just hasn't got refractory celiac disease type 2 he's got stiff person syndrome and 17 other bad things up with him most of them are outo immune diseases I've got a auto ammune disease 😢 but refractory celiac disease is far the worst auto ammune disease its more trouble some than any form of cancer in my opinion, I really feel for you and thank-you for this video as its so rare know one has heard of it before my brother is a warrior mentally and physically like you I love your spirit and your warrior attitude you beautiful sole being malnourished is the worst your a good lady and you and knowone deserves this horrible disease God bless you how are you doing now
Maybe you should excluse other grains because all of them have prolamines (oats, rice, quinoa...)
Thanks for sharing. Really hope you’re able to find how to feel better.
Im sorry you have been struggling so much, I’m right there with you. best wishes always thank you for sharing your story 🤍
Thank You. We'll get through it somehow
Great video: hope you’re feeling better. I had the same issues as you.
I really feel for you and what you’re going through. I have microscopic colitis and wonder if you’ve been tested for that? So many of the symptoms seem to be the same.
Thank you for sharing. I have been diagnosed for over 10 years. I am very sensitive and do not eat out except occasionally at GF dedicated restaurants. But, like you, I have many allergies, so eating out is not easy either, even at GF dedicated restaurants. Just curious, is your Immunoglobulin A very elevated?
I appreciate you so much for making this. I’m currently in the process for being diagnosed with refectory celiac and I also have colitis. It’s been over 5 years and I’ve done 3 rounds of steroids and three rounds of immunosuppressants, seen multiple GI drs and had so freaking many colonoscopies and endoscopies and still haven’t hit remission for my celiac or colitis.
Honestly it’s the most frustrating thing to feel like you’re doing everything possible to get healthy and nothing works.
I feel like no one talks about it or knows what it is so trying to find information and support is so hard. Keep doing what you’re doing. You’re going to help so many people🤍
Thank you again🤍 I hope you start to feel better soon.
That sucks so much that you’re having to go through that! It’s really difficult not to feel alone in all these struggles, but I hope I can help you some! The longer I have been an ambassador with Beyond Celiac and keep talking with others going through similar experiences, the better I feel. I created an Instagram , twitter, and discord all for this group, and plan to host a live twitter space sometime soon - hope you can join and feel less alone in this!
I fully understand. I, too, was diagnosed with RCD type2.. it's not a fun journey! My heart goes out to you.
I stopped colonoscopies, endoscopies, steroids, all of it. There really is no point to put myself through that. The SCD or GAP diet are best options for me except I really enjoy potatoes... that's my downfall. In everything else, I'm doing well. Organic, GF grain,dairy and sugar free... all whole foods etc... doing the best I know how but not easy when you do not maintain any nutrition. Muscles are being impacted now... that's not good. I pray for wisdom as to know what and how to help myself.
Please, please look into healing with the mind-body connection. It has been life saving for me and so many others! At least research it! I hate seeing people suffer like this!
Diagnosed Febuary 2022, have dermatitis herpetiformis confirmed by biopsy. Follow a strict gluten free diet but as you stated I'm not improving. More and more bad days. This is 1st I've heard of Refractory celiac diease. Following for more answers. Thank you for your story.
I have had a rash the past 7 months. It began with 5 months as a symmetrical rash then changed to random areas, not symmetrical anymore. Looking for helpful information on dermatitis herpetiformis. Do you have any recommendations? I read somewhere that when you get a biopsy make sure you go to a dermatologist that is familiar with DH or they will most likely take the biopsy from the wrong area leading to a negative test. My dermatologist asked me "Where would you like me to take the biopsy from? My reply, "I don't know? I've never done this before." Then I said "how about there?" My results came back today as negative. I am so itchy. It starts as dry spots, then water blisters which crust over, then it turns to dry leather-like skin which continues to itch. I don't know what to do next. Does any of this sound like what you experienced with dermatitis herpetiformis? I need help.
After years of feeling well, I had lost of pains in 2020.. It turned out to be H Pylori. However, now I am again in the same situation... My intestine seem to overwork and on a few occasion I had to go to the toilet in the middle of the night, although my stool is perfectly fine. Now I keep having, stomach ache, overworking intestines, nausea... I am terrified!
I find probiotics essential in my daily battle with celiac. I use Align brand.. no affiliation with this brand but after trying others with no results.. I will keep using these until they stop working. Initially I took one tablet daily as recommended but now I take one every other day( helps financially) which still really helps. I have been following a strict gluten free diet since my diagnosis 10 years ago. But you are right, even on the diet, it doesn’t eliminate all residual effects of celiac.
I hope you get this comment. Take care.
I have been gluten free for 3 years. Still experiencing symptoms as well
Losing a lot of weight. Going back to the doctor next month. Are your antibodies at normal levels now? Just curious.
I have been diagnosed with Celiac 6 years ago and since then I discovered that I basically can not eat any grains, as my body mistakenly recognizes it as gluten, and also can't eat eggs unless hens were true pasture raised (not fed by grains) . Same for dairy products, if they mix grains into their food I will react. So, I am ultrasensitive, which doesn't leave me with a lot of options. My life is revolving about what will I eat next , and hoping that I won't get a reaction. Now , if I get reaction, besides gastrointestinal symptoms, I get a full range of systematic neurological symptoms as well, skin rash, body aches, and it takes good 2-3 weeks to start feeling normal again, sometimes longer. My whole life is turned upside down, and it sounded so simple in the beginning when they told me, you just stop eating gluten and you will be fine.....
Has anyone tried fasting at all? I heard a 7 day fast helps heal
I have been diagnosed with Sncd 4 years ago, I went through a lot of pain physical and neurological.
I do also have lactose intollerance, wheat, rice, soya, nuts, peas and histamine allergies.
I have been diagnosed with IBS too and with a mthfr C667t heterozygous mutation.
At the moment I am struggling a lot despite my keto diet which is based on omega 3, food rich of fibers and magnesium.
Hi Angel! First I want to say, I know that sucks - feeling like you’re doing everything possible to feel good and healthy but still having symptoms is just crappy. What is sncd? Im not sure I’ve seen that acronym before. I also deal with food allergies and despite everything I do, I deal with multiple symptoms daily. Im happy you found this channel though and I hope through the platforms I’ve created we can all feel a little less alone and a bit more supported ♥️ I see you found the Instagram page - we also have a twitter and discord, feel free to join those too and reach out to me whenever!
@@supportforceliac8967 seronegative is a celiac disease which doesn't trigger the iga, ttg or ema. It can be diagnosed just with the endoscopy, which was almost with your same result such Marsh 3b.
Struggled most of my life with these symptoms.
Which other allergies do you have?
@@angelfreedom911 oh that’s interesting! I hadn’t heard of that type before. I’m allergic to rice, apples, watermelon, peanuts, cashews, almonds, and pea protein. I’m also a sensitive celiac so I can’t eat oats or really any grains either. It was weird to me that I never developed any food allergies until after being diagnosed with celiac. I’m planning to have a live twitter space sometime soon and hopefully you can join! What part of the world are you in?
@@supportforceliac8967 I am italian. As far as I remember my first symptoms were more severe with milk as a young kid. I had allergies all my life and probably I managed to alleviate the symptoms while I was developing eating disorders.
What about you, are you american ?
@@angelfreedom911 Oh- I hear that Italy is great for Celiac, because the medical community and government has acknowledged it for some time now. I am American, yes. Located on the west coast. I hear from a good bit of people with celiac that they feel they had symptoms since being a kid and they feel it might have masked the celiac.
Your story is a bit different from mine but I also have additional dietary restrictions. That cuts way down on the foods we can eat! You have my sympathies! I can't eat chickpeas or nuts or many seeds or anything from corn which rules out many of the gluten-free products and recipes. Guessing you live in North America where there's more gf stuff. Here in Central America there isn't as much. I find gluten everywhere, including some raw meat from the supermarket. I hope you figure it all out and feel better.
Hi George! You are so right, having any additional food restrictions or allergies on top of Celiac really cuts down on food options. It’s definitely difficult and I can imagine not being able to have corn is really hard in Central America! It’s difficult too to explain it to people that you buy food from. Have you heard of or ever tried Otto’s? It’s a brand of Cassava flour that has changed my life. They have great recipes using their flour and it’s the only way I can have baked goods - really added a lot of options for me.
@@supportforceliac8967 Cassava is a great flour but unfortunately I can't eat it. I rely mostly on rice flour. I don't think I've seen Otto's near me. A local brand here is Jinca. I find it difficult to get people to understand why I can't eat french fries out because they typically share the oil with breaded foods, or why I can't eat sourdough bread when people with gluten sensitivity can. Fortunately, a bit of the local food where I live is gluten-free. Rice and beans are staples.
@@geebs76 I can totally relate to that! It is very hard for me to explain to people what Celiac Disease is as well. Hopefully the more people learn about Celiac, the easier it is for people to understand why we have to eat the way we do and with such caution. I am personally allergic to rice but before I was it was a huge part of my diet. Rice tends to be a popular substitute for gf products too when you can find them and beans are delicious and filling. I'm happy that at least a few local places offer some food options for you! I live in LA and with so many options I still only have a small handful of places I trust to eat at. But, there is hope for the future! The more Celiac is known throughout the medical community, the more places will start to understand how to feed people who are Celiac and have food allergies.
I have many of the same issues. Can’t have dairy, soy, or corn. 😢
I don’t mind preparing my own food and avoiding many things but it’s the corn that’s crushing. It eliminates everything. Virtually all gf products, no condiments, no candy… etc etc
So I feel for you
U had an UNGODLY rash for well over a year. THen I had a digesitve "episode", inovlving much blood. My entire digestive system hurt fo 5 days, during which I had no appetite and only drank water. SUrprise, surprise!!! THe rash started to go away. I then emabrked on an elimination diet. You guessed it...the last thing I added back in was beer and bread. Rash began to come back. I tried to get a blood test, but the lab screwed something up. By the time my MD told me, I'd been off gluten again for about three weeks. I was NOT about to go back to it just for a test. I then went totally grain free for four months. Now I'll eat rice occasionally, and don't seem to have a reaction.
What slays me is peoples' reactions. Yesterday was Easter. My sister got a chocolate mousse pie. (My favorite). In a crust. She thinks I can just scrape out some mousse. My other sister thinks I can "ease" back into it. Both of these women have husbands/kid with all kinds of allergies. I would NEVER suggest my brother-in-law (allergic to tree nuts), pick out the walnuts in a dish. First of all, I wouldn't make such a thing if he was going to be around. No one tells people allergic to shrimp, to just "pick them out" of the sauce....
Also the people who "claim" to be gluten intolerant, cause maybe they think it's cool. Then they'll eat a pice of cake. Gives those of us with severe problems a bad rep. They don't get the fact that this is a PAIN IN THE ASS!!! I would LOVE to have a slice of pizza!! Or a pice of garlic bread!! But I (we) simply can't. EVER!!
PS. In addition to rash going away, so did ALL of my achy joint pain. ANd tinnitus.
I am just curious how to find if I am refractory faster than 3 years? I am 4 months on a diet and my condition is 3 times worst. Not so much in the toilet but I am constantly tired and more tired after 4 months on GF diet. Pain in joints is my second simptom (2 years now),atopic dermatit is my third simptom, recently I discovered almost 0 vit D and very low B2, and low ferritine and folat. My personal doctor is not assisting me, she makes thigs go slow in purpose, she said "you do not look sick, you do not need other doctor" I am trying to pay aditional doctors and blood tests by myself but I couldn't afford it for long. And I don't know what I am suppose to do...
I forgot to mention I am on scale "Marsh 3a-b"
Hi, thank you for this. Celiac disease is not nice. You need a properly qualified gastroenterologist to guide you and help you get the best relief from this disease. Non specialist healthcare professionals do not have a good enough understanding of this pernicious disorder. Also, it is hugely important to avoid cross contamination as it happens more often than we're lead to believe. A degree level qualified dieticians is also invaluable and not to be confused with some of the lesser qualified and experienced 'nutritionists'. Good luck to everyone who has this nasty life long condition.
Do you have endometriosis?
Refractory Coeliac Type 1 or 2?
They believe it is type 1
Has anyone used medical marijuana to treat your refactory celiac?
yeah, not help
Look up Colton Turner.
Maybe stem cells might be an interesting treatment...