My Coeliac Diagnosis || How To Coeliac
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- Опубліковано 29 чер 2021
- Check out Robyn's Coeliac Story: • My Celiac Disease Diag...
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There was a woman who won one of the first Survivor seasons and she said she didn’t realize she had celiacs and it’s literally the exact reason she won. She was living in the wilderness on whatever meat she could find and felt AMAZING because she wasn’t consuming gluten!
HAHA i love that!! That's amazing -going to look into this lol
I wasn't diagnosed with Celiac Disease until I was 59!!!! After a week being gluten-free I realized that I didn't have a stomachache after eating dinner!!! It was life changing. Eating out is always a trial for me. The cross contamination gets me and end running to the bathroom with explosive diarrhea. Praying I make it to the toilet on time. Oh, it's a wonderful life! 😀😀😀⌚
The best thing for me was the end of crippling pains in my intestines and not having to constantly run to the toilet
Loved this video! It's so nice hearing people with similar stories to mine. I was diagnosed in november of last year after I had just turned 19 and I honestly didn't start researching and watching videos like yours until a few months ago. It was (and still does) create so much anxiety around eating that I didn't really want to think about it too much but now after ten months I am seeing benefits and feeling slightly more content on my gf diet. The main symptom that I'm excited about is that I no longer struggle to maintain weight. I used to eat so so much to try to gain weight and it would work if I could eat a lot consistently for a few weeks but as soon as I ate a normal amount I would start losing weight again. I also found it very difficult to eat a lot because it would make me feel like gagging thinking about food. I'm so glad that I don't have to stress about getting enough food in anymore - I just have to worry about what food I'm eating!
Great story! I’ve also had the “all or nothing” bowel movements when I was a teenager and was diagnosed as IBS. Only in my 20s when I started waking up in the middle of the night with vomiting and diarrhea crisis *at the same time* and having to be taken straight to the hospital I realized something was not right but never related to gluten. Got diagnosed at 29 yo and I agree - regular bowel movements are the best :)
Honestly I can't say it enough, I'm glad you agree!
Thank you for making and sharing this video. I was diagnosed in 2007 and started eating gluten-free. I remember cleaning out the gluten foods from my cupboards and pantry and giving all the food to my brother and his family. For me going gluten-free was so much easier than dealing with gastroparesis and slow intestines. I've kinda got the gastroparesis under control, the intestines are still a work in progress.
Gosh, you would have seen such difference in gluten free food available since 2007. Hoping you find a solution for your intestines !
Thanks for this video and your happy demeanour. I’ve just been diagnosed at age 47. Completely shocked me and made me sad if I’m honest. My only symptom is tiredness but I always put that down to my job (shift work). Now navigating my way through eating gluten free and realising all the foods/drinks I can never have again. Hopefully will become the norm sooner rather than later. Cheers from UK.
Love the video, I was diagnosed at 40. I experienced joint pain, pimples, irrational anger, brain fog, burning feet etc. Gluten challenge nearly broke me and there was no support after at all
Oh damn, the gluten challenge is something i'm so grateful to have avoided. I hope one day there is a way to diagnose without this!
My symptoms were really similar to yours! Also muscle and joint pain, brain fog and dry skin, starting aged ~10. In the end I got my diagnosis in 2019, being almost 21, when I went to the hospital feeling so incredibly sick I couldn‘t even stomach water. They did blood work and biopsy and then they basically told me that I‘m in a state called coeliac crisis, that my body was on the verge of starving and that I was the worst case of coeliac they had ever seen. Took me a year to fully recover
WOAH. I haven't heard of it being that extreme. How terrifying! Are you feeling ok now?
@@howtocoeliac yes, everything is ok now, but recovery was tough :)
Good video. For me my spring allergies and eczema went away. This was the best part of going gluten free.
The best thing I experienced after going gluten free was that my teeth stopped hurting. My teeth would ache so bad not even during eating or drinking. It just felt like a headache in my mouth all the time. I came to find out later thats a fairly common symptom when you’re not getting enough nutrients (iron in particular) due to celiac.
Love your videos! Thank you for sharing your celiac story ❤️
Oh wow that does NOT sound pleasant. Did it go away pretty quickly after moving to a gluten free diet?
The best thing I found was that I started to actually grow and gain weight! I was diagnosed when I was 7 and had very stunted growth because I was so malnourished it was crazy!! And agreed, regular poops are fantastic!!❤️✨
I slightly wonder if that's why I'm so short haha. I'm so glad you agree about poops 😂
The best thing after diagnosis was the insane bloating going away and I was always in sooooo much pain my stomach hurt so bad, and that was now gone!
Worst: someone get me a gluten free croissant!!!! 🥐
I still get brain fog and joint pain and fatigue though. On top of coeliac I also have Rheumatoid Arthritis, Lupus, and Ehlers-Danlos Syndrome. My Coeliac diagnosis actually led to doctors finally searching figuring out my other conditions believe it or not!
So I’m thankful for my diagnosis and answers 🙏🏻
Oh gosh I'm sorry to hear you've been given the royal flush of autoimmune diseases! I hear that it's quite common to develop other ones if you have one already, but I'm glad at least they know what yours are!
@@howtocoeliac yes I’m just thankful to know at least so I can know how to live with them and work with it! They speculate I may have more going on, but I just take it all one diagnosis at a time haha 😅👍🏻
Thanks for sharing your experience and talking so openly about bowel movements! I’m not diagnosed coeliac but suspected I was for a long time but chose to ignore it. I’ve had all the same experiences as you and encouraged by my Mum (who is diagnosed coeliac) I switched to a GF diet last September. The change, albeit tough, has been incredible. As you say, hurrah for regular bowel movements! 😊😊😊
It's honestly the best thing and no one talks about it 😂😂😂
Best thing after diagnosis was realising all my issues while pregnant (I lost half my body weight in 8 months and grew a baby) weren't in my head like gastro told me. It wasn't pregnancy related! Also joined lots of dots of lifetime issues like poops and skin issues.
Ugh, it's so frustrating when a doc tells you your symptoms are in you head :(
Thank you so much for sharing! Our stories are so similar! I was also diagnosed at 22 (March of 2019). I am surprised I made it all the way through my last semester of college I was having so much brain fog, fatigue, and all the other not so fun symptoms that come along with celiac disease! The only way I actually thought to get tested was by a 23andMe test that showed I had an increased risk for celiac, so I got my blood test and endoscopy! Sure enough I have celiac disease, I feel so much better now. I wish the US had stricter gluten testing procedures/labelling laws though because for the first year I didn’t realize Cheerios were not celiac safe here 😅 also prescription meds, so now I always ask the pharmacist. It is not an easy transition, but I also feel so much more myself after healing my gut. It does make travel tricky though!
It's crazy how different you feel after right? I almost wish I could go back and study again because I feel like I'd do a lot better haha.
Oh darn, I've totally heard about cheerios catch people out.Hopefully there will be a positive change in labelling laws in the US.
My youngest was in the NICU after she was born and from her VERY FIRST FEED she puked! She puked 30+ times a day for four years before a new GI dr did an endoscopy and saw ZERO villi and polyps around the entrance to small intestines. We did Gf immediately and life changed immediately!!! 8 years later and we have a nurse w her at school because she’s so sensitive she can’t even touch it! But her health changed drastically but she is incredibly short!
Oh poor bub :( That's so young to be diagnosed!
Nothing wrong with being short 😂 I'm 5,2
Thank you so much for this video! I understand so much what you mean. My whole teenage years were awful until I got diagnosed at 25, which of course was life changing! I also completely agree with the nutritional appointment! They should be scheduled sooner 🥲 It’s been three years for me, and I learn something new everyday hahahahahaha
Right!? Three months is a long time, and there are people that don't even get offered one at all
The best thing I experienced is a tie between my joint pain and the brain fog going away. I was awfully sick before diagnosis, but GI issues were not my main complaint!
Oh my gosh joint pain!! I totally forgot to mention - I wrote it off as growing pains but I haven't grown since I was 12 LOL
I got my diagnosis to prove my then girlfriends mother wrong. She insisted I had coeliacs, I was pretty sure I didn't, in the end I got a blood test just to shut her up, aaand I got a phone call from a nurse saying that "yeah, you definitely have coeliacs". So that went well.
Also, to answer your question, the brain fog lifting and feeling energized for the first time in my life was definitely the best part about going gluten free. Also I had a meeting with a nutritionist, it was too late and completely useless. Learned absolutely nothing from her that I hadn't already learned from other sources.
Hahaaaa that's too funny. But I'm glad you found out one way or another. And RIGHT??About the nutritionist - it's so redundant
😂🎉❤ Loved this video! You are hilarious!!!
thank you for sharing :-)
I got diagnosed properly around a year ago, I'm currently 18 so I would say I was diagoned earlier than other people in the comments. I started having problems with my stomach around year 11. I remember I was sitting in my French class and my stomach made the most loud and embarrassing noise, this had happened to before but that was the first time it was so loud. I was so embarrassed and that was when I thought of going to the doctor, they did a blood test and then called me in to say I may have celiac disease but they weren't sure so I needed an endoscopy. The endoscopy confirmed that I had celiac disease I and started my gluten free diet around February or March of 2020. I absolutely hated being gluten free, one of my favourite food is the fire noodles. I had a tradition of watching the whole stranger things series with ramen and fried chicken, and I was so upset when I realised I couldn't do that any more. But I have more or less come to terms with it but I still wish I could whatever I wanted, I was a major foodie before my diagnosis😁
I totally hear you about noodles.... I don't miss many foods but instant noodles is one that I definitely do. Have you tried making your own fried chicken? Not as fun as a takeaway butit still might be as good hahah
@@howtocoeliac I have tried but it comes out hard a rubbery, but I have found a recipe that seems like it could work but it uses a air fryer, something I don't currently have so I might try it out later.
btw rice noodles are really nice and most brands are gluten free!! i like itsu instant noodle pots they’re nice
I was diagnosed with Crohn's first and then coeliac at 38ish. My only symptom that cleared up was farting, but it wasn't that bad to begin with. I wish I had more symptoms that cleared up. I also wish I had had one last goodbye to gluten, I wasn't told about my positive blood test and had no idea coeliac was on the table when I went for my scope (I thought it was for my Crohn's, which it also was for).
That's so annoying, what a lack of clarity for you. Were you already gluten free for crohns?
I’ve been diagnosed with celiac and I’m on a strict gluten free diet, my blood results showed that I’m clearly bit consuming gluten but I’m still getting symptoms but my endoscopy and sigmoidoscopy was normal? I don’t understand it??
How long did it take for your bowel movements to become normal, and how long did it take for your energy to come back?
I’ve been celiac for 20 years
Awesome video! 🙌 I have so many thoughts:
1. Thank you so much for sharing my video! 😍
2. POOP CHAT!! Okay, so thanks for your bravery in deep diving into this topic. LOL I actually had a very similar experience to you, but wasn't ready to get into that detail in my video. 🙈 1000 points.
3. Stomache trouble + physically active classes (dance class) = THE WORST.
4. I've been to China twice since being celiac and the airlines had NO option for GF&vegetarian. They gave me so many fruit trays that I couldn't look at fruit for weeks afterward. 😂
5. We need to do a collab. 😉
Best thing for me since going gluten-free is not worrying every day if what I'm going to eat is going to cause pain/gas/bloating. It's crazy that I went my whole life thinking that was normal!
Thank YOU!!!!! I'm dying to know how you found eating gluten free AND veg in China, I imagine it's difficult. It's probably one of the few places I would be too stressed to travel unless I could speak manderin lol
Yes we should do an international collab ❤️😊
Is 20 high ttg
How did the scope diagnose you ? Flat villi?
Not sure 🤔
Endoscopy or colonoscopy??
Endoscopy for me!
Howmany Ttg level you had at that time?
I don’t think I ever got told!
It's blood test which shows your immune reaction level.that blood test called Ttg-iga(Tissue trans glutaminase)
By the way I'm from India ND at the age of 26 I got celiac disease...before 25 or 26 by born I ever take gluten in daily basis but how it came at 26 I don't know...but that time I was in deep depression that's my immune system clutter...
Give me a small reply if you do..😊
Yeah I know what it is, I just never got told what my levels were sorry! x
I wish I had normal BMs.... :'(
oh xx I have my fingers crossed that you will have them in your future soon
😂🙏👏‼️
I have celiac disease too. So I feel you. Buuuuut why you spelling it like that???….
You sure your mom doesn’t have it? As well, It’s generic.
Yeah I know - it’s only a 1 in 10 chance though. She’s been tested I believe and doesn’t have it.