Living with Celiac Disease - My Diagnosis Story + Gluten-Free Experiences
ฝัง
- เผยแพร่เมื่อ 22 มิ.ย. 2024
- LOVE YOU SO MUCH! Thank you for being here with me. Let me know if there are other gluten-free or celiac specific videos you would like in the future!
TIME STAMPS
0:00 intro
1:36 my diagnosis story
5:59 eating gluten free
8:47 other autoimmune issues
10:29 answering your FAQ's
11:14 how to handle eating out
12:59 handling the guilt
13:40 thoughts on gluten-free being "trendy"
15:14 should I get tested for Celiac?
15:42 traveling tips
16:51 best gf substitutions
17:48 dating with celiac disease
18:20 accommodating a gluten-free friend
19:34 the BIGGEST gluten-free myth
20:30 what I wish was more common knowledge
21:27 oat milk
22:13 sharing a house with gluten-eaters
---WHERE TO FOLLOW ME---
INSTAGRAM: / michel.c.janse
TIKTOK: / michel.c.janse
MY FOOD INSTAGRAM: / lafoodfiles
TWITTER: / michel_c_janse
POSHMARK: poshmark.com/closet/michel_janse
PINTEREST: / michel_janse
MAX THE DOGGO: / max.the.goodest.boy
----LET’S HANG---
+ WANNA JOIN THE FB FRIEND GROUP? / micheljanse
~SHOP~
-FAV AFFILIATE LINKS & PROMO CODES-
-Most of my jewelry is from Mejuri and I have an affiliate link for 10% off: mejurifinecrew.sjv.io/zabVzr
-CBD: "MICHELJANSE" for 15% off your first order at this link: myeq.com/?coupon-code=michelj...
-Cozy Earth (my sheets): my.cozyearth.com/michelcjanse
-ManiMe (My stick on nails!) 20% off with code 'michellovesmanis' AT THIS LINK: manime.pxf.io/4ZVO3
-Max's Dog Food (Code MAX for 15% off) glnk.io/145j/michel
-Roolee (My Fav Online Boutique) Check for frequent sales: www.roolee.com?tap_a=6753-c39683&tap_s=743582-196543
-VellaBox (the best candle subscription!) 'MICHEL5' for $5 off www.vellabox.com/?ref=michelj...
----Equipment------
MAIN CAMERA: amzn.to/2tWr5Nt
VLOG CAMERA: go.magik.ly/ml/18d9o/
Handheld Tripod: amzn.to/2XsNXQx
MIC: amzn.to/37xTYOO
LIGHTING: amzn.to/2VsNiyp
Hard Drive: amzn.to/2yNyx08
----FAQ:----
~How tall am I? 5'7
~Where am I from? Boerne, TX
~Where do I live? I spent 2016-2021 in Pasadena CA but have now moved to Austin, TX
~What did I study? Nutrition and Dietetics from ASU!
~How old am I? 25 (born in '97)
~Are you Christian? yes!
~What's your full name? Christiane Michel Janse
~How do you pronounce that? Like... Christy-Anne Mick-Elle Jan-See
~Do you have pets? YES! A rescue pupper named Max :-)
~Favorite Store? Everlane + Madewell
~Favorite Drink? Oat Milk Matcha or Lemonade Kombucha
~Favorite Friends? YOU
FTC: This video is NOT Sponsored. Some links may be affiliate links meaning I make commissions on sales with no extra expense to you. (thanks for supporting me by using my links!) All opinions are my own.
I tested negative for celiac disease (blood test & colonoscopy), but my stomach cannot physically break down gluten. My brain gets foggy, I get really bad bloating, gas, stomach pain, ect. My gastroenterologist told me I have gluten sensitivity. As someone who doesn’t have celiac or a gluten allergy, but is also not gluten free as a preference, I wish more people understood there is a spectrum of conditions and medical reasons people can’t have gluten. It’s not just one or the other
I have non coeliac gluten intolerance and I feel your pain. Soemtimes I just say I have coeliac so people don't try to give me gluten because "it won't hurt one time". Spoiler alert, it does, the few times I accidentally had it I got an almost full body rash and it makes me bleed :(
I recently ate gluten by accident after successfully avoiding it for well over a year. It’ threw me into a scary depression with no ability to regulate my emotions. Took a couple days to level out and come back to normal. Horrible experience and a good reminder to always read labels. ❤
It affects me this way too!!!
I always took a nose dive as well, but I never put two and two together. Now it makes so much more sense.
Thank you for sharing your story friend!! 🫶🏼🫶🏼
@breannacarels I am celiac too and I didn’t know it affects your emotions too ❤
I was diagnosed in 2018 after over 10 years of symptoms. I got to the point where I could not stop losing weight not matter how much I was eating. I had dozens of tests done and saw multiple specialists and was told that I just had "IBS". I was near death by the time a doctor finally mentioned Celiac. I don't know why it took the medical community so long to even suggest testing. I am so thankful to be alive.
I'm 45 and was JUST diagnosed after a lifetime of tummy issues. Thank you for this video❤
🫶🏼🫶🏼
I have ulcerative colitis I have had it for 10 years now. I am lactose intolerant I cannot have dairy. I have a hard time to ask for the servers to take cheese off my burger. Sometimes they will look at me and are upset the I ask for no dairy. I try to advocate for myself. My husband is also very sweet and will also ask the server about the dairy things. My husband is also very sweet and understanding. I have gotten really good at looking at labels. God bless the vegans they have helped so much! Thank you so much for your Celiac Disease update! I love you!
I’m not someone who has celiac disease but I think it is such an under-researched and unknown disease. It’s wonderful that you’re using your platform to educate people more on it. I just hope that more restaurants and other places start putting out more gluten free options for those who need it! Another awesome video💕
My 14 year old daughter has been dealing with the same symptoms you mentioned. She has since gone home bound with school due to her symptoms and the anxiety associated. Thank you for posting this. I will definitely show her this video.❤
Thank you for all this interesting information Michel. It’s always good to be informed about anything we consume but especially with allergies. You are such a smart person and a great teacher .
This was really helpful! I have a friend who has celiac and it’s helpful to know ways to to make her more comfortable and less anxious about visiting, sharing meals, etc.. I didn’t realize how easy it is to get gluten’d. Thanks for sharing about this!
This was very informative. I do not (to my knowledge) have celiac but have had issues with absorption and just gut issues in general. Thank you for shedding light on this. This must be very difficult to live with. I have a major sensitivity to mold so I understand how careful you have to be and how cross contamination is a big deal. People don’t realize how difficult life can be when you have any sort of major sensitivity/allergy. You described this all very well. And how thoughtful of Jordy. It’s hard to find men who are so compassionate.
Ever since finding your channel and hearing about your celiac disease diagnosis, I always end up writing about celiac disease in my nursing program so thank you! I don’t have celiac disease but I enjoy watching all your videos so I always learn something (:
I should send this video to people who ask me for more info about celiac because you summarized so much better than I ever have. Thank you.
Thank you for this video! my first time get to know you was when I was diagnosed, I searched and found your previous video about Celiac disease, and it was really helpful specially at the beginnings.
From that time on, I always watch your videos:)
I would love to see more videos about celiac and gluten free dishes :)
Thanks for sharing, very informative! I look forward to the your next video about this.
I loved this video! I’ve been gluten free for about six years and it’s definitely gotten easier over time with more options at the stores, restaurants having gf items on their menu - I’m only intolerant to gluten (not celiac), but my body has been so much better since I cut it out and it’s truly no fun when you’ve been “glutened.”
Michel… I have to say I think you are one of the most authentic souls. Thankyou for being here and being you😘
🥹🥹AWE, thank you so much friend!! 🥰🥰
Wow what an awesome video! I was diagnosed when I was 13 years old and I’m 32 now. I don’t even know anyone else with celiac so it’s pretty comforting to hear someone talk about these same food anxieties that I deal with on a daily basis. Thank you for making this video! I’ll definitely be subscribing for more awesome gluten free content ☺️
I only work withA couple ppl with celiac disease but it but it is getting more common ❤ I have it too more recently diagnosed
Thank you, dear! My mom has lupus & I know how it gives you a totally different life than everyone else! I am more than sure its the same for celiac.
Its so great to see you take care of yourself.
Great video michel. What a journey but its very very interesting & eye opening 🤔
Thank you so much for sharing ❤ .
Have aGood week 🥰
All of this is very interesting!! Im not celiac, but you sound really peaceful about it, good for you. As always, i love your videos ❤️ have a great Day!
Thank you for the advice. There's so much information to take in, a lot of adjustment.
My niece was diagnosed and it’s really helpful learning from your experiences. Thank you for sharing, I look forward to the sneaky ways gluten hides video
Hi Michel! Thanks for sharing this video. I had no idea how hard it can be to diagnose. Never would have guessed that stunted growth would be a symptom. Or that it can present itself so differently in people.
Thanks for sharing. I don’t have celiac disease, but have friends that do. This helps me understand why they are so careful.
This was great and very informative. Thanks for making this vlog.
Thank you for all that info! I’m sure you have just helped a bunch of people and servers in restaurants ❤
Michel, as a fellow Celiac of now 2 years ( known ) I share many parables with you. I appreciate you sharing your story. - I have so many similar experiences. - I'm considering making a video similar to yours but from a mans perspective. - I do lots and lots of searching online for Celiacs but I run into mostly women. - I spoke with my providers and they've told me on different accounts the reason that some are diagnosed more often than men is because women tend to engage with their physicians more. - Anywho, your video brought me comfort and helped me understand my condition all the more. - Thank you very much again for sharing your story!
P.S - I have Graves Disease too. - That's my pair. - By controlling my Celiac Disease with diet my Graves is almost completely in remission. Hopefully this Fall I'll be completely off my meds. - As for Lupus, interestingly enough my mother has that too.
The gluten-free abroad point is so true! I have family in Italy, and one of them is gluten-free. They've been hospitalized twice because of cross-contamination because the distinction between dietary preference and allergy is not common knowledge. Whenever they visit it's with a suitcase full of gluten-free pasta (from one pasta factory in Italy dedicated to making exclusively gluten and allergy-friendly options) just to be extra safe. It's good to hear that are more options around now for people who need them! ☺
I feel so dumb now! Lol I’ve been telling people that gluten is a non-issue in Europe. Perhaps that’s for gluten sensitive people rather than a true celiac? I’ve had friends say that pasta did not bother them in Europe like it did here but it must not be as detrimental to them as to a true celiac individual.
@@selahvie8 they must not have celiac but a wheat allergy, celiac is an allergy to specifically gluten. Gluten is in wheat but not everything containing gluten has wheat, if that makes sense.
That was the case with myself, I had allergies to many foods here in the US, but was able to eat everything when I went to Italy with no problem, the only time I started to feel sick was when I ate some almonds that one of my family members had brought from home (I'm not allergic to almonds) that was the proof to me right there.
I came to realize, it's not the food it's the GMO'S, the quality of the food and how it's grown/processed (I did a research paper on it) the food quality in Europe is much better and most countries have outlawed GMO'S.
@@selahvie8 they may have a reaction to pesticides or something used while processing/refining wheat
I've non coeliac gluten intolerance and trust me, I get a reaction to anything gluten@@selahvie8
if you ahve a true allergy or intolerance to gluten you'll get a reaction, I'm not American and that's been my experience@@liliesofthefield5310
I really don't know how long you had this in the plans but if you go back to your video three years ago I think I just said please remake this (that) video and here it is!!! I freaking love that!!!
I was diagnosed with celiac thirty years ago, as a result have always been interested in diet and I have learnt new things from your video. Thank you
I found this so interesting! I have suffered with lactose intolerance most of my life but it was not really a known thing growing up (I'm 58). The past 5 years, gluten has really bothered me but come to find out it's really wheat that bothers me so eating gluten free seems to help. I also feel "glutened" in my head. I feel fatigue, brain fog and down in the dumps. Thank you so much for sharing your experiences.
My son was diagnosed with celiac at 2 years old and he too has mental and emotional symptoms when glutened. Now that he is 12 and can articulate what he is feeling he says he has brain fog, anxiety, cries easier and becomes frustrated easier, all in addition to the physical symptoms. I love seeing all of your travel content when you show all the places you can safely eat ❤
Thank you for sharing your family journey Erin! 🤍🤍I am honored that you are apart of this community!
My son reported brain fog as well. When I changed his diet he went from C and D grades to straight A's. The teacher asked what did you do?!" He is now in college and still getting top grades.
I can relate! I was diagnosed at 23 in 1994 after many, many investigations and a biopsy confirmed it. I now have 2 teenagers and only one of them has celiac disease. We make it work! GF products are plentiful and way better than 30 years ago, although so expensive:( I think all of us with Celiac disease have felt awkward at times but there is more awareness so that helps. Thanks for shining your light on it!😊
This video was very helpful! Thank you ❤
My daughter was diagnosed at age 5, she is now 21. As a mom of a celiac I think you answered the questions just as I would have. I will say, I used to cook two separate meals, etc. One for her, and a gluten one for the rest of us. I did that for about 5 months. Now it is so easy to make all meals gluten-free. We each have snack baskets in the pantry so everyone can have what they want for treats. All of the food and baked items that come out of my house are only gluten-free. I bake things for others that have celiac that know us, but they don't bake. We always bring her food when we travel, and rarely go out to eat. Most restaurants try, but they cannot guarantee. Stay safe and healthy! Well done!
❤ this is fabulous, I tend to stick to the same restaurants, if the waitress or waiter says ‘oh it should be gluten free’ I tend to stick to a bowl of olives! On a recent Xmas meal out, the manager came out with my starter “are you Louise “, confident I was going to be ok, then she came out with my main, and desert before any one else, fantastic service and I wasn’t glutened. I had the same diagnosis as you with biopsy. Your explanation was perfect. Have a lovely weekend, Lou xxx
I have so many thoughts, but the big thing that stood out to me was what you said about how it’s hard to eat at other peoples houses. I’ve found that a way I can show my friends with food allergies that I love them is by learning about what they can and can’t have, building their food-trust, and then making them treats they can have. I just made some quinoa brownies for a friend whose daughter has a lot of food allergies. I use to send her the recipes I was using so she could be confident they were safe. I think now she trusts me, and it’s a great way to be a blessing to her and her daughter. I’ve dealt with food sensitivities, but never allergies, myself. Thanks for sharing Michel. :)
I enjoy doing that for others as well. I know what it’s like to feel left out, so if I can, I substitute extra things in a recipe so more people can have it. Last week, I made banana bread with no gluten, dairy, sugar, soy, nuts, or egg. :) I feel annoying when I clarify about every single ingredient if I’m not certain they can have something, but I’d rather be safe than sorry!
Really interesting and informative, thank you 😊 I’m just starting on trying gluten free as recommended by my doctor and I’m amazed at the less obvious food things that have gluten in. I can get my head around things like bread and pasta having gluten in but when it’s things like soy sauce it’s like 🤦🏻♀️ I can only imagine what it must be like to have to be really strict with no gluten. I’d definitely be interested in hearing more and look forward to your upcoming video. Love and thanks 🙏🏻
I learned so much! Thank you.
Thank you so much, very clear and interesting description. I hope you come back soon with kind of food for breakfast, lunch and dinner I need to know please.
Just a note Michel, you can also get a card that is watermarked, sealed and laminated by your rheumatologist/GP. I have a port in my chest and my dad has defibrillator. We both have cards with our information that we provide at the airport, or whenever we’re going through any kind of xray. I know that in my area (Birmingham, AL), most cardiologists, oncologists, rheumatologists and all the metal pins, rods and screw that the ortho surgeons have to use in backs, hips, knees, etc. I do also know that the allergists around here also do the cards for people with major and life threatening allergies, to show at restaurants, schools and other places where common allergens collect.
Thank you so much for sharing this ❤❤❤❤❤
Yes! All the gluten free content would be amazing. I have hashimotos so gluten free would be very ideal but I find it so hard to do it. I video about recipes or common gluten free favorites would be amazing. Your go to foods and how you make them. Anything that you can share would be amazing
My favorite way to bake for anyone with hashimotos or any dietary restrictions or allergies, is just to find substitute ingredients and use my favorite recipes. For example, I can make my regular banana bread recipe, but use the flour she mentioned and coconut oil instead of butter and monkfruit instead of sugar, and Lily’s chips instead of regular chocolate chips… I just substitute for whichever boxes I want to check. :)
I have been having issues with my youngest who is currently two. Her blood test came back more than double the highest level but her biopsy came back fine. I have noticed since changing her diet to more of a celiac sensitivity and just being more attentive to things that are gluten free it has helped her tremendously! I love hearing from someone who can actually recommend things that I can try and possibly add to our list of foods.
Silent watcher here, I rarely comment but I felt compelled to say thanks for this video! It took a long time to figure out that I was extremely sensitive to gluten as it can also be tied with Hashimoto's. I worked with a dietician who tested me for possible antibodies to gluten and I have 11 different ones along with many vitamin deficiencies! I learned this after I started watching your channel, so thanks for making it feel less scary. Also, looking forward to that video on ways gluten hides, I'm still learning new things. Last thing to get me was imitation Krab :(
I realize health is a personal topic, but if you are comfortable with it, would you consider making a video more about your diagnosis and experience with Lupus as well?
You look the same as you did in high school. 😀. I’m glad you found a diagnosis. I’m not celiac but highly sensitive so I understand everything you’re saying and act as though I’m celiac when I eat out because I don’t want to be ill. It can be tough for sure especially socially and yes eating at a friends house is always stressful when they don’t really know the rules of eating gf.
So helpful. My daughter was diagnosed with celiac about 4 years ago and I'm still learning and I worry about her more than I probably should.
One thing that didn't affect you and I am so thankful it didn't was the lack of insurance. I had diarrhea for five years and went to the doctor. There was no way that I had that kind of money to get those tests. I went off gluten and pretty much immediately it stopped. There was never the chance of "Maybe I can have this because I am safe"
Also, I will second the stating you have Celiac disease when you order. I went to an incredibly healthy restaurant and told them I ate gluten free. We talked to the chef later and he was wonderful. But he said that they only really keep things safe if someone says they have an allergy or Celiac disease. We left there and went to Kohls. My husband went to get my wheelchair (hello autoimmune issues) and I had to run to the back because I had diarrhea.
I'm really glad you graciously sharing this part of yourself.
That was me after almost 100% meals at restaurants before I knew I had gluten intolerance. I spent so much time in the bathroom, it wasn’t even worth it. I knew it was pastas and breads related, but I couldn’t pinpoint it cause I would order salads and still get sick. Turns out croutons would be added even if I ask them to remove them, they would just take them off but crumbs still left behind, and then a lot of the salad dressings actually had wheat as thickeners in them.
🤍🤍
Thank you for sharing your story friend!!
Thanks so much for sharing this video looking forward to your next video of the hidden tricks of celiac. I just got diagnosed 2022 fall and all the information I get helps. I’m asymptomatic and I did have a gastroenterologist for the test. I also have a few auto immune diseases. Thanks for all the info!!
I have Crohn's Disease and was diagnosed at 10 years old. Similar symptoms as Celiac and it's also an autoimmune disease. I have had 10 bowel surgery and I needed a permanent ileostomy at age 19. My Crohn's has been severe from day one and as a result i had multiple hospital admissions. I ended up becoming a nurse. In 2019 I had 2 surgeries which have completely flipped my and my family's life. I now just have enough bowel left to live. You need a min of 100cm of small bowel a d I have 130cm. I'm now 47 and on permanent disability. I completely understand the struggle with nutrition and how any autoimmune disorders and GI issues just kick your butt and drain every part of you. Thank you for being open with your community. It really helps people struggling to adapt and feel not alone. I miss being a nurse so much. I looked after patients that needed bowel surgery and got ostomys and I was able to share my story and give them reassurance going forward. You are doing the same for lots of people moving forward through their journey.
Having Hashimoto Thyroid Issues I’m always looking for gluten free foods and is Not always easy .. my mood can get like a roller coaster at times 😮so I really love to follow all your suggestions/ foods that I have not thought off .. and appreciate your journey ❤😊
Same here. I recently learned Hashimotos can mimic bipolar symptoms because it can cause such extreme mood swings.
@@sashabenton4413 yes sometimes I question my own sanity 😂😂
Same here. I have Hashimoto and avoiding wheat makes me feel more healthy. Another is garlic, eating it makes me very sick. Soya sauce is something I have avoided a long time because of Hashimoto.
My only Issue I have is that I can’t stand Gluten Free Bread and is hard to find one I actually can eat 🙄😊
@Sabina Mura me either. I have some tortillas I found that are not to bad. I miss bread.
Went gluten free over two years ago and I'm never going back! Love it
I absolutely understand. I am *severely* allergic to onions (like epi pen, dial 911 allergic)! I could absolutely relate to your celiac "mine field." I too have had times where I felt guilty, or apologized for being a "high maintenance" dinner guest/companion. You just need to keep looking out for yourself and your health. (Fun fact: when my daughter was learning to read, one of her first "sight words" was ONION, so she could read labels at the store with Momma!)
I have allergy to all onions and garlic. This type of severe allergy I have for bees. Ooh too many illnessess all together, I guess!
Just so you know Michel, caramel coloring is no longer an ingredient of concern for gluten. I recommend following the Celiac Space as they provide a lot of useful information and it's run by celiac specialized dietitians (who also have celiac themselves). They have a great list of ingredients to watch out for.
Great tip!! Thank you friend!🫶🏼
Thank you for your insight on celiac disease. I bring my own food everywhere. It is mind-blowing when we are first diagnosed. I am sorry that you have Lupus as well.
Can you do an in depth video like this on lupus? I’d like to learn more about your journey with that!
Yes. I'm so glad you mentioned the "auto immunes bring a friend" situation. I was diagnosed with celiac at 38 years old and a year later with LPP, (an auto immune that is a scarring hair loss conditon.) I pray I don't develop anymore than these. It has been really hard losing hair at my age. I have been completely gluten free for over 2 years now and have done alot of research on my own. I had hoped to see more improvement than I have. I still have ibs so, certain foods stil trigger an intestinal response.. even though I am very careful with gluten. (I switched everything down to toothpaste, makeup, food, etc). I still wxperience bloating at times, but my doc tells me with having ibs to, it is hard to tell the difference between the two issues sometimes. :/ I hope more research is done on auto immunes so we can have some relief from these things.
Michel I told a friend of mine about you and your living with celiac disease since my friend had issues with gluten. He's a friend of mine from high school from way back lol I graduated in 1984. Anyways I hope your story helped him and will for countless others who listen to your story. Prayers and Wishes Lisa Hampton 😃
🫶🏼🫶🏼🤍🤍
I would love to hear your story getting diagnosed with lupus and ehlers danlos as well as your symptoms and experience living with it.
Thanks for making such an informative and lovely video Michel!
As an Aussie with gluten intolerance (whose done a lot of research as well as travel over the last 15 years after diagnosis) the guidelines for what is considered gf in Aus are different to those in the US.
According to the U.S. Food and Drug Administration rules, food must have fewer than 20 parts per million of gluten. Whereas in Australia, the food code states that Gluten Free - contains no detectable gluten and Low Gluten - contains no more than 200ppm.
Given wheat is one of the largest agricultural items grown here - we use it more as it’s cheaper. For example, a snickers bar in Aus contains wheat glucose syrup - full of gluten. In the US, a snickers bar is made with high fructose corn syrup an is gluten free.
So its essentially down to how we make stuff, as well as each regulatory body and what they’ve decided is ok for food packaging 🥰 hope this makes sense and answers a bit about the differences in each country x
gluten intolerance (dr diagnosed!) from Argentina, the regulations are so true! also from place where wheat is much cheaper. Also really annoying people think intolerances are a choice or whatever, my symptoms when accidentally consuming cross contamination or gluten haven't been fun :(
Great info...My daughter was diagnosed with lupus about 15 years ...she was early 20s....and she is doing well. 😉
This is very specific, but would love to see a segment on your favorite GF restaurants in Austin!! I have Hashimoto's and live in Austin.
That’s very interesting about your mental and emotional reactions, I recently noticed the same when I had what I think is IBS flare up x
A lot of the chemicals that affect our mood are actually produced in our intestines, there is more and more evidence showing connections between our mental health and our digestive system.
I have had this same mental/ emotional flare up due to ibs flare. Glad I’m not the only one who feels this way
Michel - would you be prepared to delve into your Lupus experience? I think it would be so helpful (just like this vlog is). Thank you 😊
Wow, I never thought about the aspect of having a significant other have to brush their teeth and things like that. It really does affect almost every aspect of a person's life!
I had to test my daughter for celiac and she was negative and I'm not going to lie, I was relieved. The first thing that ran across my mind was on no, she will have issues like Michel and have challenges. She does have different challenges but, I really respect how much you have to go through. God bless ❤❤
Brilliant !
Thank You
✨🙏✨
Excited to see your other video you plan to make about hidden gluten etc!! I was diagnosed last year in March and I found you because of searching for people like me. It’s so comforting to see people like you out here advocating for both yourself and other celiacs! Thanks for giving us an update! This makes me feel a little less alone in this world with an autoimmune disease!
🥹🤍🤍 thank you for sharing your story and I am so honored that you are here!!
@@MichelJanse thank you for creating a safe place for me to come to! ❤️❤️
I’d really be interested in a similar blog about your lupus diagnosis.
I understand your struggles for sure. I have a gluten allergy, but I am also allergic to soy, shellfish, sesame, and peanuts. Also many tree nuts are a problem for me. It can be a challenge to eat. Thank you for sharing.
I do not have celiac disease but I found this video so interesting and informative.
I would love to see more videos on just living this way. I feel like I have done my research, but I'm wondering if I could still be missing something
I’m not gf and I do not know anyone who is due to preference or allergy but this was very interesting and educational. Thanks!
Thank you for sharing your story. I found out I had it 3 days ago because my daughter. She started throwig up daily or multiple times a day for 3 months straight, we were back and forth with drs testing for everything but this. I never heard of celiac before like most. She wasn’t growing in any way and it was so upsetting I probably have ptsd from it. But we figured out it was gluten (us not drs) and she stopped throwing up. But she didnt get diagnosed until 15 months, where her levels were 10x the range eating gluten free but not entirely because cross contamination. So then I found out too. Celiac is so crazy..
Recently thought I had Celiac disease after terrible stomach/digestive problems. Until I could get tested, I ate gluten-free. WOW! Do I have such sympathy now for anyone with that disease. It was so complicated trying to avoid gluten. Turns out I do not have Celiac disease, thank goodness. But I will forever have a soft spot for people like you, navigating this gluten filled world! 💜
🫶🏼🤍
Loved this video. I’m a celiac too. With possible sjogrens celiac since 2018, and possibly sjogrens since 2002. I never had the lip biopsy and so they were never 100 percent on that. But the celiac and most recently casein intolerant for sure. I use braggs aminos in place of my soy sauce. Good information. I too won’t eat others cooking it’s just too scary for me to risk that. More education is definitely needed. My husband went nearly all gluten free for me. He only eats regular bread and tortillas. Oh and pizza crust and that is it. So that really is helpful.
My girlfriend is gluten-sensitive but not celiac, and I was impressed with the way a sandwich shop we recently went to (which also included extensive vegan options and modifications!). When my gf (gf gf haha) specified gluten-free bread, the cashier immediately asked "is cross-contamination okay, or are you allergic/celiac?" In this case, cross-contamination was okay, so they prepared our sandwiches together.
We also hung out with some friends, including one with multiple serious allergies and intolerances (incl. gluten). We did a special shared-dinner night where we all brought sealed, allergen-friendly, vegan ingredients and had an amazing time. Being considerate of the people we love is part of the joy of loving them. I'm a bit more sensitive to this as a vegan who has been treated badly in dining settings before, but also, it's a privilege and a joy to make food that people can eat safely and actually enjoy!
Anyway, I learned a lot about celiac in this video. Thanks as always Michel!
Yes, “GF” can be confusing. I wrote on a label to my brother at Christmas, “from your GF pal”. He said, “my girl friend what??”
Please do more videos on this topic.
Thank you so much!
Thank you for such an informative video. Both myself and my kid are gluten intolerant and have the MTHFR gene mutation which makes it difficult for our bodies to metabolize the nutrients we consume. I didn’t know I had the gluten allergy until after my kiddo was born and he display major issues with it. He can’t have gluten because if he does it leads to a complete meltdown and he can’t regulate his emotions at all. He also has major digestive issues when he consumes gluten. We have been a gluten and dairy free household for 6yrs. It has gotten easier to shop for food now that gluten and dairy free products have become more available.
Awesome video Michel! Can't wait for the hidden gf vid - I may slip up with some I have no idea on!
Great video Michel. In the next video you talk about this, could you discuss non food products when it comes to gluten free. I’m sure this must be difficult, as it hadn’t even occurred to me before that some beauty products etc could have gluten. How difficult is that for you? Thanks
I am not cealiac but had digestive issues all my life. I was partially diagnosed with Irritable Bowl Syndrome in 2015. And got the 100% clear diagnosis of IBS after seing another Gastroenterologist in 2018. I had a Gastroscopy 3 times (2018 - 2020 - 2022) Also had the short colonoscopy in 2015 and the long version in 2022 where they could not do it all the way. So I know that the prep for a Colonoscopy is not fun and disgusting. I did go gluten-free in the past and found it help me have less bloating and IBS flares up. So leaning more on gluten intolerance/gluten sensitivity. And since being diagnosed with Hypothyroidism in April of 2021 I try to limit my gluten intake. This was a very informative video.
I could relate to so much of your story!!!! Thanks for sharing to help others. I’ve been GF for 2 years and am not really interested in getting tested. My grandma, who I am so much like in so many ways, was diagnosed with celiac after a long time of being misdiagnosed and she is now extremely malnourished and about to pass away from dementia. I believe it is at least partially from unintentionally poisoning herself for years. :/ Considering that it is hereditary and that I have all the symptoms of Celiac, I don’t see how it would make much of a difference for me to get tested at this point.
Your video reminds me of my own stomach issues, I have bad GERD or acid reflux which prevents me from eating anything with citrus and also spicy food, it stressed me that I can't eat food that people would enjoy without bothering my stomach.
Your story is the same as my sister's. when we go out she packs her food and we have traveled two hours for her to be able to eat in a restaurant and I love the food as well ❤️
Hi Michel, How was your weekend? Since you are living in San Diego for a while. What your top 5 to 10 Celiac Friendly Restaurants or Cafe that you have been going to everyday? Also What your favs Wellness in San Diego that you ❤? Sending you so much ❤& 💡& a healthy year ahead!
My son has been having a lot of stomach/intestinal issues....I hadn't actually considered celiac before (he has non-verbal autism so it's hard for him to express how he feels and what symptoms he has) but the light bulb just went on while watching this. So going down this path with him to see if I can help him. Thank you!
How do you deal with medications? Is I have noticed some meds have gluten in them. Thank you for sharing!! ❤❤❤❤❤
Same I was diagnosed coeliac in 2018 when I was 22. Was weird at first but used to it now.
My cousin has celiac's and one thing that surprised me was how (relatively) easy it is to make baked goods gluten free. There are some that are definitely trickier, but in general it is super easy. I use the Wegman's gluten free flour blend (cheaper than Bob's Red Mill) and it is the best one my family has found. I also always try to pick a restaurant or ask her beforehand if there is something she can eat and always change the place if she can't eat anything.
I do not have celiac disease, but I have discovered that I do better without gluten (also dairy and soy) and there is a restaurant that I order from and have recently started to ask for a burger on a gluten-free bun. When I get a particular server, she always asks me whether it is an allergy or a preference. The first time she asked me that I asked her why and what the difference was from her perspective and she was able to tell me the different precautions that they would take if it was an allergy, such as using a dedicated toaster, etc. I can't say that I have had any other server at any other restaurant ask me that yet. It was nice to know that she does it consistently and is keenly aware of the difference between an allergy and a preference for those who really need it. I have also found out that it is pretty difficult when you are trying to eliminate gluten, dairy and soy (as well as sugar) all at the same time. Lots of gluten-free products turn to soy as the substitute which makes it really necessary to read lots of labels. I'm convinced that shopping takes me so much longer as I now have to go to five different stores to shop and have to read the back of every single package I pick up. Obviously it would be better for me to focus on whole foods and much less on packaged items, but it is nice to have a few convenience foods available. Thanks for the video. It's helpful to hear how you manage your diagnosis and what others can do to help you stay safe.
Oh I thought I just saw a meal kit ad with you eating pasta! Did you have to spit it out or use your own ingredients?
Very informative! Simple Kneads is the best gf bread I've tried! And it's also vegan! Vegan and gluten-free! I'm fun to eat dinner out with! 🤭 Try Malk Oat Milk. It's even better than Oatly. 🙂
Oh boy, I have 3 celiac grandkids and I totally understand! Hang in sweetie!
Thanks Michel for the video. Although you're not a clinician, you have years of experience to share, and your advice seemed pretty sound to me. I've recently been diagnosed with coeliac disease. My main symptoms are distended abdomen, burping, migraines and "brain fog" (extra-GI symptoms can include neurological problems). Now that I've started a gluten free diet, I'm hoping that the migraines will improve over time.
Being interested in science, I've been reading scientific papers and watching lectures from Coeliac UK. I think you can afford to be a bit less cautious about cross-contamination from utensils at home. I think a pan used for cooking a gluten containing dish, should be fine provided it's washed.
The issue with oats is interesting and not settled. Australia/New Zealand don't recognise oats as gluten-free, whereas other countries such as the US and Europe do, providing the manufacturer has proven absence of cross-contamination. A deeper dive into oats and coeliac disease can be found here, th-cam.com/video/jg2IrCO2yIA/w-d-xo.html.
I'm not celiac but I have a mild wheat allergy. The cross contamination isn't an issue, but if I digest it, it effects me. I try not to really make a big deal about it at restaurants for kinda the reasons you talked about. I don't want them to feel the need to do anything special since it's not necessary for me so I really only tell them if I have to ask about something, it their gluten free isn't obvious on the menu or they have alternatives you have to request. I have actually had a restaurant ask me if it was allergy or choice, which for me a not the easiest question since I fl in the middle (I can eat it but I choose not to cuz I feel better) but after you explaining the issue with restaurants, I kind of appreciated it. Maybe if more places would ask that question it would make it easier on the kitchen staff.
Please more videos!
Thanks for sharing 🤍