Hi everyone, this has been troubling me for a long time now, though as a child I never realized the severity of it as much. I was diagnosed with celiac disease when I was 6 and my parents followed some of the recommendations in my early childhood that were up to date then (2000s/2010s). However, they were never really strict about some things, like my mum used to routinely offer me the top of her cheesecake at the cafe since it didn’t contain flour (so she thought) and never made any distinction between simply gluten free and celiac safe. Going to my grandmothers house, she would routinely gluten me with pasta that she mixed up, and my parents never bothered to check the package she used. I developed OCD, different eating disorders and bone problems, that they never connected to celiac though. I would really like to believe that they simply didn’t know better, but my mother is actually a gastroenterologist and diagnoses celiac disease on a regular basis. I am now an adult and try to be as strict as I can, still unable to follow everything since I still live with them and my mother refuses to follow the celiac guidelines (she uses her gluten knife to cut cheese, uses the same chopping boards and cooking spoons) and when I or my siblings say something, she erupts and says I am too strict and none of her patients follow the rules so closely. She then points to my bloodwork and says it’s normal, although I get sick very often and had to go to hospital for tummy aches multiple times the past years. It just puzzles me completely how a doctor can be like this when she probably knows the evidence, sometimes I think it’s just too inconvenient for her… it makes me really sad though. Anyone had a similar experience? It would help to know it’s not only my own mother who does this…

I experience very symptomatic celiac, and the smallest accident leaves me feeling sick with stomach cramps, bloating, insomnia, and heat flashes for about 4 weeks. I do my best to eat gentle, cooked foods to make things as easy as possible on my stomach during the weeks afterwards. But the challenge is that I feel STARVING for most of that duration. I'm exhausted from everything and crave the energy that food provides, and it's so hard to eat so little to be easy on my stomach while still performing at work and doing everything I need to do.

I struggle particularly badly when I'm in my luteal phase before my period. I normally want to eat everything anyway, but during a reaction recovery period it's on overdrive and I want to cry from how hungry and malnourished I feel. It's very difficult for me to not just eat something actually fulfilling that I'm craving (not gluten, but I want to eat normal food that isn't overly fodmap friendly) and I hold out as long as I can, but then it's hard not to break and then overeat a large meal because I'm so hungry. But then anytime I do the stomach cramps get even worse and I regret it.

Do any of you struggle with this too? What do you eat when you're trying to manage your reaction symptoms but you also just desperately need to EAT? I'm so tired of suffering and starving all the time.

If I tried to eat my boyfriend (normal) would I (celiac) get glutened by him? Just curious

Gah, my day! You’ve been there, a day of speakers and lunch. Was told there would be a gluten-free meal for me. Got there and I was told I could unroll the wraps and eat the contents 🤦‍♂️🤦🏻‍♀️🤦. FML.

We all have experienced this. The years go by and you stop trusting it when people say they’ll provide something you can eat. Usually, I pack a meal, but sometimes I just don’t have time. I’m so frustrated.

So when I was invited to a lecture by a visiting artist at my local Art center and was told multiple times there’d be a meal for me. I was sloppy and didn’t pack a meal. So I had nothing. And these people are really nice and they mean well, but they just don’t get it and I don’t wanna make a scene, I don’t want to be difficult, but God I wish there was a book I could get them. There ought to be a book for all of these caterers and the people who organize events that outlines this stuff so they understand about cross-contamination and that the flour from Italy isn’t any better, etc., etc..

There outta be a book, and it should have stuff about celiac and diabetes and alpha gal syndrome, and allergies. It should be readable, and funny even, and explain the realities of what life is like for people and the potential side effects and down the road stuff and what a pain in the butt it is and how exhausting and miserable for people who have to live with this all the time. But yes, written very cleverly so that it’s both funny and informative.

It should be a book about the dietary limitations and cross-contamination and what foods people can’t eat. It may be a little bit about substitutes. But not a page about cures or treatments or how to get rid of these things be legit science or quack pseudo doctors you tell you to stand out under the full moon and beat your naked ass with Willow leaves or any of that stuff. There’s plenty of room for books like that, but this needs to be just about people who are not home who are at a restaurant on vacation or traveling at a conference and they just have to goddamn eat something.

Caterers and restaurant tours are so often annoyed by this, by these people who dare to have dietary difficulties. But people, if this is your profession at the very basis of it is hospitality and taking care of people. I remember reading books about Greek mythology from the children’s section of the library when I was a wee tot. Back in the day, hospitality to the traveler was sacred. Taking care of people who were not home defined a civilized culture. Are we not civilized? Does this basic core compassion not matter?

Please tell me there’s a book like this out there. Something that will clearly and mindfully explain to the mothers at the preschool. Why packing peanut butter sandwiches could endanger another child. It will explain about the long-term effects of celiac. And will clarify how dangerous alpha gal syndrome is. Something snappy and tight with interviews from experts and annecdotes from allergy sufferers and also from restauranteurs. Clear explanations. Readable lists and charts. Something people could use!

A guy’s gotta eat. A gal‘s gotta eat. Kids have to eat. We are not trying to be difficult, we’re just being human and we need food.

I would love to go out and find a book like this and I could gift it to the arts center. We need this book. Tell me this book exists. If not, somebody write it. A book like this would be a goddamn best seller! I’d buy copies by the case and give it out everywhere!Please!

Does anyone else in here get dh primarily on their hips?

EGD pathology indicates celiac but am still waiting on my blood results. This is all new to me as I loved gluten containing products! Are there any apps/tools that help you learn what products have hidden gluten or finding GF aware/free restaurants that you can’t live without. I’m just starting to purge gluten out of my house, get rid of cutting boards and other kitchen equipment, etc. TIA!!

I just need to vent, and maybe someone out there can relate?

My mom thinks she can “cure” my celiac disease and EPI through traditional medicine. That by itself is crazy..but what hurts the most isn’t that, it’s WHY she cares. My health was neglected my entire life. I spent years complaining about symptoms, she kept dismissing me, telling me I’m being dramatic or looking for attention (I was just a kid)

I was finally diagnosed at 22 after living with it my whole life. Now, suddenly, the concern isn’t about how much I’ve suffered. It feels like it’s about making me “normal” again so I could be more marriageable, because who wants a defective product? She literally said something like that. My worth is reduced to how “marriageable” or “breedable” I am, instead of me being seen as an actual person. I am more than my illnesses. I personally feel very normal, more normal than ever, I feel like the best I’ve ever felt.

It’s just so exhausting to feel like you’re being treated as something that needs to be fixed so it has value, instead of being loved and cared for because you’re a human being.

Hi everyone,

I was recently diagnosed with celiac disease, and I'm trying to understand whether anyone else has experienced the same symptoms. I'd really appreciate hearing about your experiences.

Has anyone else dealt with any of this symptoms?

• Nausea

• Vomiting

• Migraines

• Dizziness

• Brain fog

• Muscle pain

• Joint pain

• Feeling like I need to use the bathroom after every meal

• Feeling overly full, even after eating a small amount

• Nausea even from drinking water

• Extreme fatigue and constant sleepiness

• Stomach and intestinal pain, even after drinking water

• Hot flashes or a burning sensation throughout my body at night

• Anxiety, depression, and episodes of uncontrollable crying

• If I get hungry and don't eat on time, I start shaking, feel very weak, and often get a migraine

• Severe back pain

• Dry lips, dry skin, and itchy skin

I also wanted to add that my symptoms are so severe that they leave me completely bedridden and unable to function or work.

Two years ago, before I was diagnosed, I was on medical leave for almost three months and was hospitalized multiple times because I was so sick. During flare-ups, I can barely get out of bed.

Has anyone else experienced symptoms this severe? If so, did they eventually improve after going completely gluten-free? Were you able to get your life back?

I'm feeling overwhelmed right now and would really appreciate hearing from people who have gone through this. Thank you for sharing your experiences.

Hi there everyone, recently diagnosed and first post here. It's been very overwhelming so far, but i'm starting to get the hang of it.

I was curious about everyone's diagnosis process. In a nutshell, i started having symptoms earlier this year, and went it to my primary and had bloodwork done, showing high tTG-IgA levels. I was then referred to gastro, who diagnosed me as celiac without having an endoscopy completed, from what i can tell from research, is abnormal.

Overall, i just wanted to get some input. Not looking for medical advise, but given this is a drastic change to my diet & health moving forward, wanted to see how this process played out for others as i'm considering continuing eating gluten and having an endoscopy completed to verify the diagnosis before i cut gluten out entirely. I appreciate it! :)

So im celiac but also bulimic severely and the rest of my family is not celiac.

Any tips on how to not binge on gluten, i can feel my stomach is getting so bad and i always feel bad and have laxatives which makes me feel better mentally but its stuffing up my whol system, does anyone else here struggle with not eating gluten?

What are people's favorite apps for scanning gluten free products, and what features do you like (barcode scanner, ingredient scanner, etc.) I want to know what apps are the best.

I have been diagnosed with celiac for almost two months now. One thing that’s really had me curious is how do you guys approach products with very very minimal risk of cross contamination but still a risk?

For example, my favorite food in the world, the Nacho Lunchable, is gluten free however not certified because it’s made in a facility with other items that contain gluten. What are the odds that the lunchable i buy is going to have enough cross contamination to do some damage?

Do any of you risk it for the biscuit with products like this? Or with products that have the “made in a facility that also uses nuts, seeds, wheat, milk, eggs…”
How am I supposed to live like this all the time avoiding all of those things? It just feels like no matter what i eat or where i eat there’s a risk of consuming gluten, so would it really be so bad to have a Nacho Cheese Lunchable like on my birthday once a year or something?

Also to state, I am not asking about restaurant cross contamination or about things like publix’s prepared foods. I have been very diligent about that!

Please be kind to me 🥲😭Thank you!

Hi All,

I have DH and I have been gluten free (as far as I know) since my diagnosis. I just had a DH flare on my elbows pop up this morning. If you have DH, how long after gluten exposure does DH appear for you? I am trying to figure out how I might have been exposed.

Thank you.

I was recently diagnosed with ADHD and I’m finally looking into medication, but I’m also worried because I know some medications can contain gluten depending on the manufacturer.
If you have celiac disease and take ADHD medication, would you mind sharing:
Which medication you’re on (Adderall, Vyvanse, Concerta, Ritalin, Strattera, etc.)
Whether it’s brand or generic
If generic, which manufacturer (Teva, Sandoz, Amneal, Mallinckrodt, etc.)
Have you had any issues with gluten or cross-contamination?
I’m trying to make a list before I talk to my doctor and pharmacy since I know inactive ingredients can vary between manufacturers. Any recommendations or experiences would be super helpful!

Thank you for your input!

My son was diagnosed a couple of years ago with celiac. His symptoms were mostly brain fog and fatigue. Never digestive. Now that his gut is healed up, my understanding is a reaction can be much worse. We have a gf house and are extremely careful with what he eats. So we don't really know.

Trying to figure out if he's sick or if he got glutened...

1. Chicken wings + Mac and cheese (rummo gf pasta)
   
2. Spring tofu rolls with peanut sauce
   
3. Homemade 7 layer dip for 4th of July weekend
   
4. Pad Thai + a rent a cat 😻
   
5. Chicken Cesar salad wrap
   
6. Ground beef Asian noodles creation
   
7. Breakfast tacos
   

My girlfriend was diagnosed with celiac back in December and she has been recently dealing with really bad arthritis and joint pain. She can't take any NSAIDs and her rheumatologist doctor is telling her to try PT. She already works a few times a week and she was a runner until the pain was too much. Anyone else deal with something similar? Recommendations?

Thank you!!!

So I have been having GERD for technically over a year but it disappeared 98% for awhile before fully coming back around October 2025. I've been taking CVS brand Famotidine during that time and now.

I feel like I've been glutened every freaking day now, I've realized that chicken eggs, granted the chicken eats a lot of gluten, can make me sick (IM FINE WITH QUAIL EGGS IT IS NOT AN EGG ALLERGY/INTOLERANCE). I discovered a pancake mix has oats in it, so I cut those out.

I'm still sick and I have zero clue, I know everything else I am eating is SAFE. No I don't eat oats anymore unless it's gluten free oats, that I'm fine with. I'm strictly gluten free and don't cheat.

So I'm wondering if all this time it's the CVS brand Famotidine I'm taking.

Has any other really sensitive Celiac had any negative reactions from this med? Please let me know I'm looking my marbles.

Okay so I wasn’t sure if I should put this under “product” or “recipe”, don’t come for me lol. But ever since I got diagnosed, one of the things I’ve missed most in summertime was s’mores with my kids.
Because no. The gluten free graham crackers are not graham crackers. I have tried like six brands and they are tiny, crumbling squares of sadness. If you like them, I love that for you, but I was still trying to find a way to fully scratch the s’mores itch.

But FRIENDS, I have a SOLUTION! I discovered that Millville (Aldi brand) “crispy rice treats” are gluten free where ”normal” rice crispy treats aren’t. So here’s the play:

- Take 2 Millville (or other) gluten free rice crispy treats, and leave them in the plastic package in a warm room or a sunny window. Not for long, just enough so that they are soft-ish.

- Once warm, while they are in the package (not the box lol), squish them down with your palm. Little marshmallow rice pancake, roughly half the thickness of a normal one.

- If desired, stick them in the fridge for like twenty minutes after squishing for true structural integrity.

- Now make s’mores and use your pre-squished crispies where you would otherwise use a sad graham cracker. You now have a s’more that will not crumble, has extra marshmallow, and tastes AMAZING!

If you chose, you could even skip the squishing, but the s’more would be tall enough you might have to unhinge your jaw like a snake lol. I have done this, but would not recommend it due to the risk of wrenching your TMJ and having to sleep on your back for two weeks straight (voice of experience over here). You could also try using one rice crispy treat and cutting it in half, but they don’t cut very well unless you have a very sharp knife.

Either way, I hope that this helps another s’mores lover get a little more joy from this summer! I wish everyone happy bonfires and no cross contamination, celiac friends!

Edited to add: I am LIVING for everyone chiming in with their own favorite substitutions here! I’m taking notes lol.

My 19 year old tested positive on blood for celiac, but his scope was negative. Genetically, he likely has it. Myself, my sister, my cousins, my nephew.. we all have celiac.. so it stands to reason that my son does as well.

What's the best course of action moving forward? Accept results at face value? Get a second opinion?

I just don't want this to cause him long term issues if he does, in fact, have celiac.

Hi everyone!

It's been a bit over a week since I'm getting very bad reactions from something and I wasn't sure what it is. I thought I might have ate something bad, but for 3 days now my diet is super clean and I just realized I use a different coffee that I got as a present. The Segafredo Intermezzo is giving me the same reactions as wheat/sorghum.

Anyone tried it and had similar reactions? I'm fine with Omnia and Tchibo that I usually use. I did check Segafredo if it's gluten free and they claimed it is. I also have very very bad reflux from it. I do not have reflux from Omnia or Tchibo. Very weird and odd. :'(

It's been 2 days now since I stopped consuming Segafredo and I feel insanely better already. I started taking some probiotics as well since then.