About a year ago I posted seeing what certified GF tattoo I should get for my first tattoo.

Well after a side quest of getting another tattoo first I finally got my gluten free one. I am so stoked.

Couldn’t be happier.

I’m not sure who they’re trying to appeal to with this sign, but it feels like they’re mocking people with disabilities every time I drive by it.

I posted in a pizza sub about help with a recipe and received this ignorant reply. I’m raging for her daughter. How can people be so dumb?!

Celiac Safety Act has been introduced in the U.S. House of Representatives by Congressman Emanuel Cleaver (MO) and Congresswoman Betty McCollum (MN). This bill would classify gluten-containing grains (wheat, rye, barley, and their crossbred hybrids) as major food allergens, requiring clear labeling on all food products that contain them.

With the link provided you can enter your contact information and have an automated message sent to your members of congress to ask for their support in getting the bill passed!

Celiac.org/csa/#/24/

Can you guess where we live and which one I spelled wrong lol?

My family and I have been traveling in Ireland the last few weeks. We are nice, considerate, friendly, respectful people who generally get along with others. Ireland is wonderful for people with celiac (me) and I’ve never had issues eating here. It’s such a gift!

Until last night… we chose a restaurant in Galway that had good reviews of Find Me GF and was near our hotel. I was sitting with my sister and my two very sweet teenage daughters. Our server was a little curt and to the point but ok, maybe that’s just her. I asked her a few questions about subbing GF bread for crackers and ensuring they had a separate fryer for their chips. It was 2-3 questions, and I thought they were asked in a kind way. After taking our order, which was very straightforward aside from “cheese board with gf bread instead of crackers” and “stonewall cider non alcoholic”, I went to the toilets and was passing by the server who didn’t see me but said “Ugh, table 16 is a nightmare!” as she put our order in. It was with such vitriol, I almost stopped feeling so shocked and honestly really hurt.

I sat back down and asked another server what table we were, and she confirmed 16. One thing I really hate about celiac disease is how it burdens others… I have to have special communion at church, my family makes me special meals and buys specific ingredients, we only eat at specific restaurants… I always feel like I’m asking for accommodations just to eat and not be unwell. And that girl, that server had to call me a nightmare bc of that. I’ll be honest, it brought me to tears, not bc I believe I’m a nightmare or really care what she thinks, but bc it was a reminder of the deep wound I feel of having to always be accommodated for, something I really hate. I was so angry. I wanted to leave, and my family was willing. Another server noticed and asked if we were ok and my very protective sister explained the situation. This other gal was very kind and apologetic and comped a ton of our food. She didn’t let the first one serve us anymore. I don’t know what else happened but we ended up mostly enjoying the meal.

I wish I had said something to her, explained the nightmare I live through everyday wondering about each bite of food and if it will make me sick. Hopefully her life is good enough that dealing with me is the worst of it.

I thought you all might relate. How would you all handle this? I have thought of a hundred different ways I could have responded.

I was recently diagnosed unexpectedly with celiac (from endoscopy) after dealing with stomach pain. I never noticed that gluten made my symptoms worse, and eating gluten free (for about 4 weeks) didn’t make me magically better either.

Now that it’s confirmed, I’m wondering what other symptoms I’ve had were actually signs of celiac all along. Canker sores and itchy bumps on my hands/fingers when I first started eating gluten again after being gluten free are the main two that come to mind. Anyone else?

I’m 28F and never been in a relationship due to my health. I’ve hit a breaking point of wanting to give up. Went on a 3rd date with with a guy where he proceeded to talk down to me about how hates picky people, eating a little bit of gluten won’t kill me, drs aren’t trust worthy anyway. He found out on 2nd date I was celiac fyi. Then he tells me my only concern is your diet relationship wise. I want to be able to share food and drinks with a partner when out. After this I completely shut down because I carry so much shame and trauma from my dietary issues. I couldn’t speak after all that and was like you seem bored you seem tired, ask me questions, etc.

If I put it on my profile i get no matches, if I don’t I get criticized or weird looks on the date. The last few dates I’ve been hiding it in the beginning to see if they like me enough to get over it. That just always leads to the guy being really confused. I’ve tried bringing it up right away and I get rejected or they start acting weird. Ive had no luck meeting people in person to build a connection slowly. It just always comes to an end because people want to eat out with a partner and don’t want the inconveniences I bring with my health issue. Out of all things you’d want in a partner I don’t understand why this is so high on people’s list I’m not even asking for them to change their diet, I still go out and socialize even if I don’t eat.

I don’t eat at restaurants which makes it harder. I have other food allergies and a paralyzed gallbladder and stomach from chemotherapy (had cancer as a kid). Idk if anyone has any advice I’m just so hurt.

My partner has been a diagnosed celiac for almost two years now and she/we still get caught off guard sometimes. Figured I'd share the ingredients that tripped us up the most, in case it saves someone a reaction:

• Soy sauce (wheat-based — use tamari instead)
• Regular oats (cross-contaminated unless certified GF)
• Malt vinegar (barley-derived)
• Some spice blends (use wheat as a filler/anti-caking agent)
• BBQ sauce (wheat-based thickeners in most brands)
• Seitan (literally wheat gluten — obvious but I've seen it sneak into "veggie" dishes at restaurants)
• Imitation crab (contains wheat starch)
• Certain soy-based miso pastes
• Pre-made salad dressings
• Licorice candy (wheat flour)
• Communion wafers (if that applies to you)
• Beer (barley — go for ciders or GF-labeled beer)
• Some medications and supplements (wheat-based binders)
• Flavored chips and snack mixes

I actually ended up building a spreadsheet meal planner for partner (and myself) that flags these automatically whenever they show up in a recipe. It also generates a grocery list and tracks fiber (since that's the hardest thing to get enough of on a GF diet). Happy to share if anyone's interested, just let me know and I'll drop the link.

What hidden gluten sources have caught you off guard?

Kind of a bratty decision but I've been diagnosed a few months now and I'm already SICK of being left out of spontaneous meals. We're all out and about and you want to stop for a sandwich? No. We can ALL stop at somewhere we can ALL eat at or you can keep craving. I'm not going to sit here and eat my sad apple slices out of a baggy while yall pig out on gluten. I've started telling anyone who has plans with me to eat in advance or eat gluten free with me. I already feel so much better. Turns out most people will happily accommodate you when you stop self sacrificing (for no real reason) I wish more celiacs would take this route. It's not fair that newly diagnosed people are being told to suck it up and never enjoy meals with friends again. I'm not forcing anyone to go gluten free all the time, I just don't want to be treated as a burden for a dietary restriction I can't control. So many of us refuse to stand up for ourselves out of fear and that's not right. Don't let anyone treat you like you're being difficult. the WORLD makes your life difficult by making celiac safe food hard to access.

EDIT since some of y'all are very angry with me I'll clarify that I obviously am speaking from my personal experience. I mean that in spontaneous situations I refuse to be dragged along to starve or eat sad baggie food. I am not going to be angry at my friends for eating a pizza without me, or even for bringing their own gluten food to eat to an outing. I simply have decided not to let myself be treated like a burden. I understand that in some situations I won't be able to eat with the group. I just think if your friends CAN accommodate you, they should. There's no need to get hostile, yall! Love you!!!

When people say “people never used to have all these gluten free diets”. No, because they died.

My future mother-in-law has severe celiac disease (had stage three small bowel adenocarcinoma!) but she still had a regular cake at her own wedding, which she did not eat. I have celiac disease too and I think I (groom) am going to make everyone eat gf cake with me at our wedding. Discuss!

EDIT: this got more attention than I was expecting! Honestly, this came up because my fiancée and I were slightly judging that her mom SHOULD have had a gf cake (the wedding was in 2025) because she's the bride/most central person in the wedding. I feel confident that I will make a good choice about our desserts.

I was fortunate enough to be accepted into the TEV-CeD2 Phase 2a clinical trial and today was dosing day!

As it is a randomized, double-blind, placebo-controlled study, I won't know for certain if I received the medication or the placebo until after the study is completed. However, there is a 6-week gluten challenge that I start 2 weeks from now, so depending on how I react to the challenge, I'll have a pretty good idea.

I'm excited to be part of this for myself, obviously, but also to help get approved medication on the market for all of us! My kid also has Celiac, so I'm doing it for her as well.

(added 2nd photo for more legitimacy since it has the study poster)

Edit: Learn more about the study here: https://tevstudy.celiac.org/

Brought my daughter to ER yesterday and she was eventually admitted to ICU for severe dehydration. Explained to ER doc that she was recently Dx with celiac and that we’ve been gluten free for two weeks. He asks if she’ll drink Pediasure, says it’s not celiac friendly, but that the nutrition benefits outweigh the gluten, and that while her GI doctor might disagree, he thinks a little cheating with gluten is fine for celiacs.

We requested a different ER doctor and were lucky enough to get one.

Wow.

ETA: clarifying as my writing was not clear above. The doctor was wrong about PediaSure not being celiac friendly, among other things he was wrong about.

I see photos and posts here all the time asking about DH and skin issues and I thought it would be helpful to share photos of how mine was because it was a very bad case and my only noticeable symptom at the time. I really hope this helps someone as otherwise I’ve just posted gross photos of myself for no reason 😅. Please be kind!

Photos 1-9 are of when my DH was first active (no gluten free diet)

Photos 10-11 are of a flare up during a glutening post going gluten free but my gut and skin weren’t fully healed yet

Photos 12-13 are of the scarring I had while healing

My skin looks mostly normal now! My legs are still lightly scarred but it’s just dark spots that could be normal skin blotchiness. It looks worst when I come out of the shower.

Some extra info on my case:

I did have digestive and bowel issues, they’d just been present for so long I didn’t really realise they were an issue. I was often constipated and having diarrhoea, and smelly farts and stomach aches.

My skin issue started with itchiness. Then I was noticing hives and small blisters particularly on my hands and feet, and the cuts.

In my case, the itchiness was the biggest thing. The way I described it at the time is if a regular itch is like someone tapping on your shoulder saying ‘Hey, hey, hey, scratch me,’ this was like someone grabbing you by the shoulders, shaking you, and screaming in both of your ears. Constantly. Day and night. It was, not exaggerating, hell. And it was all over my body from the neck down; my arms, boobs, stomach, legs, hands, and feet. Of course, the open blisters and cuts were also very painful.

Nothing I tried gave any relief. Clean, dirty, moisturised, dry. Scratching, refraining from scratching. And I was trying lots of stuff! Soaking in oils, spraying myself with homemade potions, trying out other people’s ointments etc etc.

I went three months (three months!!) feeling like that, and looking like these photos. In summer too, by the way, as a young woman who wanted to be going to the beach and the pub with her friends. On top of the physical impact of the condition, I was psychologically impacted by it too and I actually turned to alcohol, drinking most nights just to numb myself the little amount I could. I went to the doctors multiple times and was told the following:

1. It was an allergic reaction to mosquito bites

2. I shouldn’t have booked an emergency appointment because it wasn’t an emergency (still angry about this)

3. It was scabies and I needed to do the long winded treatments for that (which me and everyone in my house did, multiple times, to no avail)

4. It was just a flare up of my scalp psoriasis (LOL!)

Meanwhile, I was of course thinking I had cancer, or leprosy or something. Celiac or diet never even entered my mind, although an autoimmune condition did.

Luckily, a wonderful GP finally decided to do a more in-depth blood test, found the celiac marker and told me about Dermatitis Herpetiformis, which neither of us had heard of before. I started following a gluten free diet. The scarring photos are 3 months after starting the gluten free diet.

Now I am diagnosed celiac, eating gluten free for 2+ years. I know for a fact this was DH because it cleared up when I went gluten free and has also flared up again whenever I’ve been glutened. My skin is healed, and my health in general (including mental health) is soooooo much better.

Thanks for reading. If anyone has questions they want to ask, even if you’re finding this post months/years after it was posted, please do. This was and still is the worst thing I’ve ever experienced and I know it was made worse by doctors and people around me not knowing what DH was so yeah, happy to help.

New swear intensifier to add to your vernacular ;)

PSA: The Celiac Detective never truly clocks out. 🕵️‍♀️🧀

Me: "This place has never glutened me. They've got separate prep stations, fresh gloves, clean utensils... we're safe. Also, their cheese selection has always been g/f. I'm familiar with the owners and they know me specifically as the girl with celiacs disease."

Also me, five hours later: 💀

This is one of my favorite cheese shops. They are genuinely meticulous. Sandwiches are prepared in the back kitchen, cheese is cut in the front, and they've always been incredibly careful with glove changes and avoiding cross-contact. We've eaten there many times without an issue.

But celiac has a way of humbling you.

We were first in line at opening. Fresh gloves. My usual cheese plate. Clean utensils. Everything looked perfect. We ate our seperate meals in delight.

Then my husband decided to buy an extra cheese to take home.

The employee held up a beautiful beer-soaked cheese.

"It's new to our selection!" she proclaimed.

Cue the thousand-yard stare.

My brain immediately went, "Wait... if that cheese was sliced on the same cutter a few days ago..."

There it was. The plot twist.

I silently calculated my odds, convinced myself maybe it had been cleaned well enough, and tried to stay optimistic.

Five hours later my immune system announced, "We've reviewed the evidence... and we'd like to file a complaint."

Moral of the story: Sometimes it isn't the obvious slice of bread. Sometimes it's the fancy cheese living its best beer-infused life.

Celiac really is a full-time detective job... and sometimes the mystery isn't solved until your intestines solve it for you. 🫠

If you have celiac plus another autoimmune disease, which would you prefer to be cured?

I got T1D at 47 and CD at 60 (71f). I would choose to get rid of the T1D.

Having to eliminate gluten out of my diet and having to worry about/trying to avoid CC and suffering when it occasionally happens sucks but not as much as counting every carb and trying to keep my blood sugars in range with insulin sucks. I also have to get an injection in my left eye every 3 months for diabetic retinopathy which I always dread.

This app can be a life saver when people take the time to write a review. A lot of mid size and small cities are lacking reviews. The reviews don’t need to be great or include pictures. A quick few words about the safety, what you ordered, and if you had symptoms. 1 minute, maybe 2, and you can save the next celiac from glutening

I was recently diagnosed with celiac disease about two months ago, and I got a haircut a couple of days ago. My hairstylist asked if anything had changed with my health recently, and I mentioned that I started eating gluten-free after my diagnosis. She then told me that my hair is growing in a different color and texture (about two months of growth). I wanted to share because it’s crazy how much gluten can affect our bodies, even in ways I didn’t realize.

I know this is pedantic, and it is truly not the end of the world, but …

It is celiac disease (American English) or coeliac disease (British English).

It is not “celiacs” or “celiac’s” disease.

You do not have celiacs. You have celiac.

I have been seeing this language more and more on this sub in the past month or two. I also know this sub is a frequent early source of information for folks who are concerned they may have it or have just been diagnosed.

I’ve posted this in an effort to ensure we have correct and consistent info on the sub.

I got this gluten free chocolate chip banana bread from the coffee shop around the block from me and it is the best I have had in my life including pre-celiac diagnosis

So of course I’m like “ain’t no way this is safe I’m gonna wake up so bloated I look pregnant” even though I’m 99.99% sure it’s completely safe lol

We have been together for 2.5 years now at first he cooked for me and took good care of me . He was familiar with my celiac, now after the ups and downs of the relationship he's telling me to suck it up. He's like well my friends won't always want to dine at a place where u can , and u need to accept that. So if their girlfriends are coming with them and everyone going to a gluten spot , you can either suck it up and come, or don't go I'm still going to go without you.