Welcome to r/Celiac!

I recently had an endoscopy done and it came back positive for inflammation.

hi- me again. wanted to share my story on how i got diagnosed with celiacs.

my whole life i had upset stomachs. always had issues. i was an anxious kid so my stomach problems were written off as such my whole life. any time my stomach hurt, id eat toast to try to feel better. it was a comfort thing.

fast forward 2020 (18 years old) i have four or five weeks of horrible stomach problems. horrible. i knew something was wrong so i went to see my doctor.

doc ran a blood test. ended up testing positive for celiac through that but obviously you need an endoscopy to confirm the diagnosis. bad news- i’m in the middle of covid world. scope doc is booked out 5+ months. immediately upon the phone call that i have celiacs, i stopped all gluten consumption then and there. easiest decision i’ve ever made.

fast forward 5 months. i’m at my appointment. they say in order to get the scope i need to eat gluten for x amount of weeks leading up to the scope. i worked full time and it was summer. to make a long story short, i didn’t eat the gluten in fear of shitting my pants during work and to avoid the gut wrenching pain it puts me in. my endoscopy ended up only having mild irritation (due to the 3-4 days of gluten consumption i did) and was ruled out not celiac. i know i am and will die on that hill.

i was SUPER careful about cross contamination in the beginning. i never shared anything and was super conscious. as time went on, i loosened up because if i shared -say- a hummus bowl with a friend and we both had pretzels- id dip from the same vessel because i never had any negative reactions so i thought i was fine.

for years i was this way, up until a few months ago when the mouth sores became a fun new problem and i figured out that it was connected to celiacs.

time to take this serious as it is and hopefully keep learning new ways on how to treat my body the best i can moving forward

So I might need to get a gastroscopy to rule out celiacs. But I’m terrified of having to eat gluten for 4-6 weeks. How long did it take you to recover from the damage you did during that period? When were your symptoms back to baseline?

I had a genetic test done 3 years ago that revealed I have the 2 celiac genes, at the time I was doing gluten free/keto for 6 months and feeling great. I was able to have gluten every once in a while and be fine.

Early 2022 I slowly kept adding more grains into my diet, thinking it was fine and maybe my genes wouldn’t be flipped on, but slowly over the last 2 years I’ve had a lot of weird symptoms that multiple specialists can’t find the cause of: slow weight gain, sleep disturbances, migrating neuropathy in limbs, migrating joint pains, migrating tendonopathy injuries, muscle weakness, visual migraines, vertigo spells, scent and fragrance sensitivity, stiff muscles and fascia, speech slurring, persistent anxiety, persistent acne, persistent dry skin, persistent constipation.

I also noticed I would have symptoms flare ups when I ate oats, corn, quinoa, rice, basically any grain. So 2 weeks ago I started my grain free lifestyle…and I’ve been going thru what feels like withdrawal: multiple joint and muscle pains, migraines, insomnia, exhaustion, low appetite, old tendon injuries acting like they’re reinjured, and then now craving gluten foods.

I’m hopeful that if I just stick with it, then I could feel much better in 6 months, especially since I’m also doing a gut health protocol to improve motility and diversity.

Has anyone else had these kinds of symptoms without the intense gastrointestinal symptoms many celiacs do get? And what was your timeframe to feeling better?

Edit: I should also add that I had 3 mri last year, including brain, that was normal. Multiple meds that did nothing. I also have mthfr and take methylated B vitamin for it. Also saw a rheuma that did blood work and had no active inflammation but did have hla b27 gene, so they keep following up to make sure I don’t develop autoimmune. All my annual bloodwork was normal last year, so this year they didn’t test much. I’m thinking the intestinal distress is affecting my protein absorption and thus affecting the tendons and muscles?

I am short on money and am thinking about going back to being a barista as an opportunity has come up, but the last time I did that it was pre-diagnosis. I am worried about having to serve and touch and be around too many pastries at a coffee shop.

Y'all, how are we even managing this joint living situation in this economy? Living solo isn’t in the budget. I got lucky finding a fellow celiac roommate in Austin through the Queer Housing Facebook group, but as a digital nomad, I can live anywhere. After experiencing a gluten-free household, there's no turning back. How do you all find celiac-friendly roommates? Thoughts on creating a chain of celiac-friendly apartments across the U.S.?

Hi everyone, This group has helped me so much regarding my daughter (almost 5) who was diagnosed celiac a year and a half ago. We will be doing repeat testing this month and want a realistic expectation of how much her test numbers will be. I’ve heard it can take years to go down to normal so what to know your experiences.

Thank you so much

Jimmy John’s has a new sandwich called the picklewich. Me and my friends got it and they thought it wasn’t as good as a normal sandwich from them. I thought it was amazing but then realized I’m used to plain lettuce wraps and they’re used to a nice fluffy bread sandwich. Of course the pickle was better for me lol, not a rant but had to share w people that get it

Wondering if I should go through the trouble of getting a diagnosis. About four months ago I started having digestive problems. Mainly acid reflux and diarrhea. I’m already lactose intolerant, but have always been able to eat cheese and yogurt just not milk, ice cream, sour cream or that type of thing without taking Lactaid pills. I thought maybe my lactose intolerance was getting worse, so I eliminated all dairy, but it didn’t help at all. Then, I developed interstitial cystitis, and my doctor said that sometimes people find relief of their symptoms by eliminating gluten. So, I went gluten free for about 6 weeks and ALL of my symptoms went away. At the time that I saw him for the bladder pain he did a blood test for celiac because of all of my digestive trouble and that came back negative. I recently tried adding gluten back into my diet just to see if things cleared up coincidentally and to solidify in my mind if this connection was real and after about 72 hours of going back to gluten, I have made myself so incredibly sick. Not only did all of my previous symptoms return with a vengeance, but deep muscle pain and weakness set in to the point where rolling over in bed is like an Olympic event. Do I put myself through the trouble of the whole biopsy process to know for sure? What difference does it make really if I know this is what’s making me sick? Does a medical diagnosis help in some way? Could this just be an intolerance? To do the blood test again, my doctor said I’d have to eat bread and pasta for five days straight, which would essentially mean taking a whole week off of work because there’s no way I could work in this state. Thoughts? Anyone have a similar situation? What did you do?

Anyone else who is super sensitive to oats feel like it’s ruining everything for you in terms of options? Ugh it’s so damn rough out there for a vegan celiac

Oats is in everything now So many non dairy milk etc and creates cross contamination issues with companies for other milks or products if they made oat products in house (unless they’re for sure dedicated gluten free oats from a dedicated safe oat field lol) Anyways anyone else feel like this? It’s exhausting I feel like I can’t have anything but Trader Joe’s almond milk at least I haven’t had a problem with that milk. I can’t have califia farms anymore or any other brands cus they have oat milks also processed in the same facility and I get sick from the SMALLEST amount of contamination it’s fucking insanity Pre diagnosis I was never like this or sensitive I feel like I was normal pre diagnosis and now im ultra sensitive since my system is so clean that if it detects a speck it fucking flips

Considering trying ozempic/wegovy/whatever at the urging of multiple of my doctors. I've always struggled with my weight. Anyway, I'm only hesitant due to the possible GI side effects and was curious if any one with celiac has experience on glp 1s?

I think I added too much broccoli because the sauce is a little watery/thin but overall I’m in love. ~$7 for like 3 or 4 meals, sign me up!

I (43/f) have been dealing with some health issues for the past 4 years. I have since been diagnosed with POTS, Eds and MCAS and am doing MUCH better and everything is pretty well controlled. About 4 years ago while I was in the diagnostic stage I had some stomach pain that was really intense and caused me to have an endoscopy. My endoscopy showed gastritis and NO signs of celiac.

Fast forward a couple years and suddenly (after a bout of Covid) I could not tolerate gluten. My main symptoms were fatigue, muscle and joint pain, rashes, mouth sores, very loud stomach noises constantly.

I have been gluten free for about 2 years and it made a huge difference in my health. My skin cleared up, by mouth sores went away, and I was able to get out of bed again.

I went to the GI Dr the other day about something unrelated and mentioned the gluten thing. She laughed at me and told me she wasn’t worried about me having celiac. She texted me and that was that. She rolled her eyes and made me feel like an idiot for even mentioning it. I do NOT want it to be celiac, and I realize we can’t easily test at this point, but I was hoping to get some advice on how careful I need to be with cross contamination etc.

When I was tested for celiac last time it was before I had any issues with gluten. If that means I can never have celiac then that is great news! But the dr was SO dismissive and condescending that I’m hesitant to fully believe her. I’m just feeling stupid for things like the fact that I have a separate gluten free toaster at my house. Am I being over the top for that? I don’t know, the whole thing just kinda shook me a bit. I do NOT want to be a patient that makes stuff up or exaggerates and she made me feel like I was doing just that. Any advice appreciated

I live in an apartment community with shared grills. I want to be able to cook with them, but I know some people grill their buns. Have any of you used a shared grill? and what precautions did you take?

my friend is moving away in a week and she’s hosting a leaving party at the restaurant she’s working at which happens to be an italian restaurant. i really want to be there for the goodbyes and see her before she leaves, but i’m growing worried about the possibility of being glutened from breathing in gluten particles just being in the restaurant? (have already planned not to eat drink anything from there) is there really a risk for me to get glutened by just going there?

PS: the restaurant is not an open kitchen btw, the room itself is just tables and chairs.

I’m new to being celiac and I’m socially awkward. How do you decide what restaurants you go to? How should I go about telling the server I have celiac? What are some questions you ask them?

Since finding out I’m celiac when I go out, I don’t know what to say or ask so I usually pick items that don’t have gluten in them… unsurprisingly I’m getting glutened most of the time. Any advice?

Made with almond flour

I was diagnosed with celiac 4 years ago after almost a decade of arguing with doctors about my symptoms. The disease was confirmed by the genetic test, the IgA test, and an endoscopy.

I live with my husband and my 2 sons, aged 5 years and 20 months. We know for certain that my husband and my 5yo do not have celiac - neither even carries the gene. My 20mo cannot be screened until he turns 4, but doesn’t show any of the classic symptoms yet.

I’ve noticed that my body is getting more severely sensitive to even very minute gluten exposure.

Has anyone successfully managed having a mixed household? All of the main meals that I prepare are GF, but quite frankly I can’t afford to feed a family of 4 using exclusively gluten free products - especially when gluten is often replaced with sugar in kid snacks. Any and all tips are so appreciated. 🙏🏻

I've had a lack to non-existent appetite pretty much every day, every meal. I don't enjoy it, and basically eat the same thing every day on routine because I'll forget to eat. I had this prior to my formal celiac diagnosis. (~ 5 years)

For anyone who feels this way, what do you do? I've tried changing up my meals, and honestly it's just sad. Any recommendations are greatly appreciated!

My parents own a chinese takeaway and when my dad makes dinner, he usually uses a Wok over flame. However I’ve recently learnt that food can be cross contaminated because the material of the wok isn’t one that scrubs clean completely.

I am wondering if anyone knows what sort of material wok would be safe for caeliacs instead? One that can be cleaned easily with soap. I’m looking into stainless steel woks, anyone know if that would be safe to use? I’m thinking of only cooking gluten free food in the new wok.

Thanks guys.

Honestly this new health condition is costing me a lot…

Any advice? Oddly nervous for some reason

before i got diagnosed i loved natures path lovecrunch granola (the dark chocolate and red berry specifically) and just found out it’s not gluten free. any close recommendations?

I feel like every celiac struggles with not knowing if they’ve been glutened or are just sick with a stomach bug but gosh I wish there was a way to know. Started feeling ill Wednesday; typical headache, congestion, all like a common cold. Symptoms continued to Thursday with a fever and fatigue. Friday morning I woke up a zombie, all the previous symptoms plus nausea, dizziness, no appetite, constipation and bloating and generally feeling just out of it. Got worse through the day as I still went to work and I’m on my feet moving around for 8 hours. Got home and crashed for a few hours, woke up around 10pm feeling OK but still feverish and just yucky. Now Saturday morning (today) I’ve been having stomach pains, nausea and insane bloating. The type of bloating I’ve only had when I’ve been glutened. In the last 10 days, I’ve only had meals that I’ve cooked, and it’s all been safe foods I’ve eaten for years. I haven’t eaten much the past couple of days due to throwing up from the smell of food. I have absolutely no idea of what I could’ve eaten that could’ve caused this. This afternoon, I forced myself to have some gluten free chicken fingers with homemade honey dill sauce just to get some protein and energy into me and it’s so to say.. released the constipation but that comes with a lot of other yucky feelings and symptoms. But I still feel awful. Unfortunately I can’t find a way to get one of those “gluten detect” urine kits to know. But what do you guys do in this situation other than rest and stay hydrated? Debating going to a walk in clinic but I have no idea what to do

Currently in restaurant with my wife. Asked for the Gf menu. Her starter came out and after she'd eaten a bit i spotted what looked like breadcrumbs.

Confirmed with the server.

Yeah, she's been glutened....

Does passing by the bread section at a grocery store cause any issues for guys? Breathing in the bread particles? I feel like I might be experiencing extra glutening because of it, but I’m also not sure if I’m going crazy 😅😅.

I'm so confused about my celiac status. I know nobody can diagnose me, but if anybody could help shed a little light, I'd be super grateful.

I was initially told I had celiac at around 13, and was GF for several years. Then a biopsy came back negative, but I'd only been eating gluten for a week prior. I was GF for another 6 months or so a few years later, and initially had an improvement in my symptoms (primarily GI at that point), then the symptoms returned so I stopped.

I've been having worsening brain fog, fatigue and cognitive issues for the last few years. I'm diagnosed with a few other conditions that can cause those, primarily Narcolepsy type 2 and ADHD, but none of the medications for those conditions have worked AT ALL.

While moving recently, I found my original bloodwork. It is positive for DQ8 and Deamidated Gliadin IgG was high (51), everything else was normal.

I went GF again about 2 months ago, and just saw a new gastroenterologist. He basically said "the bloodwork says you have celiac, but it seems like you're one of those that don't have to be super cautious, a cheat every once in a while or cross contamination won't really effect you". But that's contradicting what I'm seeing online, so now I'm just super confused. We're doing an Endoscopy next month.

I guess the bottom line is - I don't really feel any better on a GF diet, but I haven't been super stict about cross-contamination. I can't figure out if I actually have it and need to be more strict, or Celiac is not the answer, or if I need to find a different doctor.

Hi everyone,

I'm 28 and I've been diagnosed with hEDs and now they're looking at the possibility of me having celiac disease.

This confuses me because I've never had a problem previously, but over the last month or so I kept getting these horrific episodes of dizziness, tingling in my mouth/back of my head, hands and feet, feeling extremely cold and hot at the same time and palpitations. This coincides with me feeling extremely nauseous and motion sick. I actually went to the hospital the first time that this occurred about 3.5 weeks ago because I had no idea what was happening to me. I thought I was having a stroke or something but my scans all came back fine but my bloods have been an issue for 6 years (high white cell count) which I'm seeing a haemophilia centre about on Monday.

What confuses me is I know for a fact I've had days where I've consumed gluten and not had any reactions.

On top of that, I made sure yesterday and today to not eat anything at all with gluten and I've only just now come back round from one of these previously described episodes. It lasted for about 3 hours and it's such a hard feeling to describe.

When it wears off I am just left feeling exhausted, nauseous and freezing cold.

Does this sound similar to anything you've experienced? I've heard people describe the numbness and tingling, but not across the mouth/back of the head.

Any answers would help greatly appreciated, I've honestly thought I'm going to die several times and it's been intense. 😅 all the best x