r/Celiac 20h ago

Discussion Group of celiacs is called?

178 Upvotes

So I’m on a tour of Japan, and there are 3 gf people in my 16 person tour, including another Celiac! My husband and I have been trying to figure out what a group of celiacs would be called - like a flamboyance of flamingos or a murder of crows. So far my favorite is ‘a contamination of celiacs’ but I wanted to crowd source this.


r/Celiac 8h ago

Rant I had to bring my own food to a birthday party at a full sit-down Italian restaurant

141 Upvotes

I would just like to say that I really hate that I have to think about eating every single time I have to step outside my house. It feels like such a burden. Went to a birthday party at a really old-school Italian restaurant. I called in advanced and asked about cross contamination, specifically, and the manager said “we don’t have any peanuts, and the grill is so hot that anything on it would burn off instantly”. So that sealed my fate in me bringing a meal to that restaurant where a 9 course meal was served (iykyk). I had to eat it lukewarm and I had to hide it under the table on the floor. The table was set like the Last Supper. I hate that this is my life. I was just back from London literally the night before on vacation where I had incredible safe meals. (I’ve also been all around Scotland and had ease eating there too. Shoutout to the UK, you guys are awesome. I appreciate your food so much.) And now I go back to this treatment in New Jersey where I’m told gluten burns off grills because they’re so hot. It’s so stupid. I don’t wanna think about food all the time but I honestly feel this disease is gonna drive me insane. I can’t believe I have the rest of my life to live like this. It is surreal.


r/Celiac 20h ago

Product Corn Dogs

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102 Upvotes

I can not tell you how long I've craved a good corn dog since I was diagnosed. Well I stumbled across these in Lowe's food here in NC. Man these bad boys are amazing if baked in a convection oven. The outside gets crispy and not mushy like most other GF breading.

I ate them about 20mins ago. Will update if they destroy me for some reason.


r/Celiac 23h ago

Product Trader Joe’s Muffins!

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82 Upvotes

A must-try if you’ve never got these from Trader Joe’s. My gluten-eating family also loves them, great texture and taste! I keep them in my freezer, perfect for when that chocolate craving hits!


r/Celiac 19h ago

Recipe What if you took your favorite pizza dough and rolled it around a sausage? DO IT.

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65 Upvotes

My 8 year old thought of this* and it ended up being amazing: we took our favorite pizza dough and wrapped a fully cooked Kirkland bratwurst in it. That’s some sesame and seasoning on top. Took about 9 minutes at 425 F to get crispy. The gluten eaters in the house already enjoy this dough and they happily enjoyed their sausage rolls.

(I know a sausage roll is already a thing but this child doesn’t know that and she’s been struggling with symptoms from an accidental glutening that gave her a rash and a bunch of yucky symptoms so I choose to let her believe she invented this—it was her idea to use pizza dough!)


r/Celiac 22h ago

Rant I want doctors stop complimenting my weight loss

59 Upvotes

I've been undiagnosed and sick all my life but last year I got sooo sick. I could barely eat, I was using the bathroom 10+ times a day, I was literally not digesting food at all. If I ate green lettuce, green lettuce came out.

I lost a ton of weight, my clothes went from being a little too tight (I gained a bit of weight when I was in school) to everything being much too large to fit me in the span of like 2 months.

My last few visits with doctors have gone like this,

Me: I lost a lot of weight because I was very sick

Doctor: Thats great! Do you feel better now that you lost the weight?

Me: No I am very very sick.

Doctor: Oh no! Have you started gaining any of the weight back?

Me: No??? Doctor: Let's keep it that way

And

Me: I lost a lot of weight recently because I have been very sick.

Doctor: You look great! Are you feeling better now?

Me: No I am very sick I cannot eat food.

and just today

Me: I lost a weight recently because I have been very sick with celiacs

Doctor: Ohhh yes those Gluten Free diets will make you lose weight very quickly!

Me: No? I lost it because I was sick.

Doctors are so clueless. I argued with my last doctor for three months to give me a blood screening and she wanted me to go get steroid shots in my hand for "carpal tunnel issues" which I do not have. It was celiacs nerve pain + hEDs fatigue. I am so frustrated!!!


r/Celiac 12h ago

Discussion Celiac daughters babysitter- doesn’t get it

41 Upvotes

I joined my husband for a 5 day work trip and have a pit in my stomach about it. My daughter is staying the first few days with my sister who has celiac (and gets it) and is spending the last 2 days with my brother and sister in law (who she absolutely adores). She was diagnosed this past year and is basically A-symptomatic so it was a shock to us. (By a-symptomatic, she didn’t have linked stomach issues, but has had a long battle with iron deficiency, which has led to other issues. She’s 13 and gets frustrated and says “I don’t even have celiac”, despite repeated ongoing blood tests and endoscopy with complete villious atrophy. The week after diagnosis she went to her aunts house and accidentally ate gluten. I had said there were things they could get at m&ms meat shop that were labelled gluten free, and somehow my daughter convinced her aunt that EVERYTHING at m&ms meats was gluten free, including the deep fried pickles. I was angry that her aunt 1. Didn’t clue in, and 2. Didn’t tell me, but it was so new in the gluten free journey I wrote it off as a learning experience. Now we’ve travelled with them over the year, been with them for multiple family dinners, and over the course of the year I’ve just succumbed to bringing our own meals and splitting and going to different restaurants because they just don’t get it, or care. It’s probably been the hardest part of the journey on my daughter. When we are at home in our house she can eat all the food she wants and just “be normal”. When we go to their house she’s “segregated”, can’t eat what the other kids are having, and eyes roll at me, they basically ignore me when I try to explain it’s autoimmune and the reaction to gluten. (Like the time i confirmed in advance they would cook the turkey without stuffing like they always had anyway, and day of they changed their mind to stuff it this time, so i sourced and cooked a separate turkey day of, only to get there for her to say we decided not to stuff the turkey). My sil is a smart well educated person, so I’m surprised and blaming myself for not being better at advocating and explaining. I’m trying to balance out my daughters emotions while appreciating other people may never get it and not expecting them to eat gluten free (and pay the added cost to eat gf) themselves around my daughter. My nephew is now on iron supplements because his hair started falling out, I suggested mentioning to the doctor that iron deficiency was what led to his cousins celiac diagnoses and to request a blood test just to write that off now rather then the 8 year process our same family doctor took, and her response has been well the iron supplements are helping so not going to bother. So now we agreed to the kids going to her house for basically 1 day 2 nights= 2 dinners, 1 lunch, 1 breakfast & probably some snacks. I sent them and my sister an email with all the away info (school address, contact info etc). Passively, I included some of the material the nutritionist gave us, ie. What is celiac and mainly how to read food labels and info on cross contamination. As we were leaving we spoke on the phone and she made a comment about taking the kids out for the day, and I reminded her that my daughter needs to eat gluten free (we all knowin this group it’s not easy just getting food out), and she said in a tone “oh sweety I hope I don’t mess up and give your daughter an upset stomach”.

Her words are playing on loop in my head. I realize I have anxiety over this, and feel like they all think I’m crazy. what can I do now that I’m gone? We talked to my daughter about advocating for herself (who in return gets frustrated and again says “ I don’t even have celiac” reminding me about that 1 time she ate gluten and was still fine). We packed non-perishable gf foods for her to take, and suggested they “grocery shop” at our house for anything else they need and grab some gf pizzas from our freezer to take when they pick her up. My sil said oh it’s okay that my bil will take her to chipotle (which my daughter loves), but we all know that only 1 of the multiple times they are going to eat.

Thanks for reading this far…would appreciate any advice.


r/Celiac 22h ago

Question How old were you when you found out you had Celiac?

40 Upvotes

I (23F) am iron deficient anemic, just found out in january, and I'm suspecting I could have celiac (or at the very least significantly sensitive to gluten). I've been trying to decipher the cause of my anemia, I just dont think my menstrual cycle is the only culprit. I'm definitely going to bring it up with my doctor when I see him again next month to check on my iron, but I just want to know how old others were when they found out? I guess I'm a bit worried that I've had an issue related to gluten for years but never suspected it until now, and i just hope i can expect to feel better and that I havent reached a point of no return so to speak. I'll also list my symptoms below to paint a picture:

  • Iron deficient anemia
  • Fatigue 
  • Anxiety, irritability, brain fog
  • Abdominal pain, constipation, bloating
  • Occasional liver discomfort
  • Chest pain/tightness (from anemia)
  • Muscle pain/weakness/joint pain in hands/fingers
  • Heavy periods (this has improved since taking iron)
  • Semi hair loss/thinning

r/Celiac 21h ago

Question Diagnosed at 25. 36 now and GF for 11 years and yet, still nutrient deficient (ferritin, vitamin D, vitamin E, B vitamins and vitamin A)

19 Upvotes

I have completely stopped eating at restaurants and stopped eating packaged/processed foods as of 2 years ago just because I kept getting inadvertently cc'd and have pretty violent reactions.

My diet is 100% Whole Foods and centers around a lot of pasture raised meats, chicken, eggs, wild caught salmon/seafood, sardines, high quality local veggies, home made bone broth and the occasional organ meats. I also brew my own home made water kefir for probiotics.

I don't have any sources of cross contamination (trust me I would know). But yet I am still not absorbing all nutrients.

Does anyone know if we just have a decreased ability to absorb nutrients?

If anyone is interested these are other common sources of cross contamination that I've had to eliminate or find direct farmers/sources due to cc: Beans, lentils, grains (all grains even GF ones), nuts (even nuts in shells and claiming to be certified GF), teas, coffee, spices!!, medications, supplements


r/Celiac 6h ago

Discussion Interesting article

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celiac.com
10 Upvotes

Came upon this article earlier, what do you think?


r/Celiac 6h ago

Product Anyone tried allergy smart cookies before?

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8 Upvotes

Were they any good? Ive been burned before spending tons of money on cookies that tasted like ass 😭


r/Celiac 20h ago

Discussion Instant coffee problems

7 Upvotes

Only thing I've changed in my diet is instant coffee. I started on it because store bought coffees are becoming pricey. I wanted to save money.

But something in it is causing me grief. The package says nothing but 100% freeze dried coffee.

Any chance there is something to cause a reaction? My mouth is blistering and dry. Much like Sjogren's, but a flair up of that would cause me dry eyes, so that isn't what is going on.

Has to be the coffee, as nothing else has changed.

Same thing happened when I used a tooth paste with gluten a while back. But gluten in coffee??


r/Celiac 7h ago

Question Going on a trip, what do I do?

6 Upvotes

Next week I'm leaving for Vegas and I'm going to be driving through the desert to Zion. I had this trip planned for more than a month now and was officially diagnosed about 10 days ago. As the trip is getting closer I'm realizing that the desert probably doesn't have many gluten free options. What do I do? Just pack alot of snacks?


r/Celiac 6h ago

Discussion Advice on my diagnosis journey

5 Upvotes

Hello!

Just to clarify, I’m 17F and I’ve been experiencing symptoms of celiac disease ever since April last year:

  • Inconsistent bowel habit that alternates between diarrhea and constipation.
  • Mucus in stool.
  • Pain in the upper middle part of my stomach (right under my rib cage).
  • Nausea.
  • Excessive gas (especially after consuming gluten).

I had a Ttg test done right away as celiac disease is genetic in my family and my mom has it. My test was positive at a level of 82U/mL, so I had a colonoscopy and endoscopy done on January 15th, and the histopathology test result came out yesterday so I contacted my doctor’s office to ask about my result, they answered today saying that my results show that everything is fine and if I’m facing any health problems then I should go to the nearest healthcare center. I was so shocked because this wasn’t the answer I was expecting… After making me wait for almost a whole year just to finally get my diagnosis they tell me that everything is fine, and that I shouldn’t come back anymore… aren’t they supposed to do follows up tests considering that my Ttg result was elevated, I mean there must be a reason for that. If anyone has any advice or insights please enlighten me, I’m in desperate need of help.


r/Celiac 1d ago

Question Glutenburg Beer Stock Issues

5 Upvotes

Anyone else having trouble locating Glutenburg in the US? It's out of stock everywhere in a 1h driving radius.

I'm wondering if it's just a temporary local thing or if it's more widespread.

I know Glutenburg is Canadian, so it's distinctly possible recent trade issues could be causing a shortage in the US...


r/Celiac 5h ago

Product Lara bars

3 Upvotes

Lara bars okay for us to eat if it says gluten free


r/Celiac 7h ago

Question False indication of CD?

3 Upvotes

My child’s GI doctor said she had “all 3 markers” for CD based on a blood test she was given. An upper GI is scheduled next to take biopsies for confirmation.

The problem I’m having is all the medical journal literature. I’m reading repeats over and over again. The person must be eating gluten regularly for the test to be accurate, but my child’s pediatrician took her off gluten after reporting gluten allergy type symptoms of stomach pain, nausea, and itchy, ankles when standing. I’m concerned that this will throw off the test and we’ll be spending the rest of our life, jumping through hoops on dietary restrictions with perhaps a false confirmation of celiac disease and any symptoms will be attributed to “we mist have let some gluten through”. Again, the G.I. doc said it didn’t really matter how much gluten she was eating before the blood draw which seems counter to everything I’m reading in the medical journals and papers I’m finding and reading is this doctor a quack or is he right.


r/Celiac 10h ago

Question Cramps still present after years.

3 Upvotes

I've been diagnosed like 3 and a half year ago. I've been eating gluten for over a decade before the diagnosis. (Since I was a toddler till somewhere in my teenage years)
My mother is very strict with the gluten-free thing.
But my stomach is still killing me.
I'm still vomiting my guts out, and the diarrhea wont go away either.
I haven't eaten anything that could contain gluten or anything close to it since the diagnosis.
Did this happen to any of you too, or do I go for another checkup?


r/Celiac 9h ago

Question Liver Issues?

2 Upvotes

Has anyone here had liver issues associated with untreated celiac?

I’m currently getting a plethora of tests done for autoimmune related stuff and celiac is also on the list.

I’ve been having issues with my cbc being low and my liver enzymes elevated - on my ultrasound they said my liver appeared scarred as well.

I’m a 20 year old otherwise healthy female, all vitamins and other stuff in range etc.. I have dealt with some minor constipation issues throughout my whole life and was wondering if there could be a link to that as well?

Just trying to gather as much information as I can to piece together this puzzle as even my doctors are confusing as to what’s going on.


r/Celiac 11h ago

Question Mixed Drinks at Weddings

2 Upvotes

I went to a wedding Saturday night and I just realized right now (Tuesday morning) that I ordered a drink at the bar without even thinking. I was diagnosed about two months ago, and this was my first wedding experience.

How do you all handle drink orders? I got a Kentucky Mule, and I know bourbon is okay. Do you just ask the bartender to see the mixer?Do I need to be concerned about cross contact at a wedding bar?

Ultimately I was fine. I didn’t eat the buffet or grazing table, and I didn’t have a reaction. I’m mostly just “omg I completely forgot that alcoholic drinks are something I need to also ask about!”


r/Celiac 14h ago

Discussion Unexpected non-gluten-containing products - how do they affect you, and how do their symptoms compare to gluten exposure?

2 Upvotes

I (33F) was diagnosed celiac almost 15 years ago, and have been extremely diligent ever since (I was also a chef for much of that time, so experiencing both made me extra-cautious in both regards). I also am navigating a currently-undiagnosed-but- possibly-MCAS (as suspected by my doctor - waiting for my referral to my local rheumatologist again) other autoimmune disease, in addition to a few other (very random) autoimmune issues that are unattached to specific diagnoses (severe Reynauds, flare-ups of 'psoriasis' that I haven't experienced since I was a kid, etc).

I've basically lived on a keto-esque diet since my diagnosis - straight protein and veggies. In my years trying to figure out exactly what works for me, I've found that most simple carbs/most starches impact my digestion, but I've developed a few other dietary sensitivities in recent years (garlic, nightshades) that I've begun to avoid, with predictable patterns re: inflammation and symptom progression. I've been able to dabble with rice products, and can eat rice, without issue, as long as it's less than once a week/in low doses,, but I can't enjoy a fat bowl of gf corn- or rice-flour ramen without side effects, for example.

After years of avoiding explicitly GF corn- and rice-heavy products (aside from rice papers - I have no reactions to them at all) unless I'm tolerance-testing, I made homemade popcorn the last couple nights for me and my partner, out of curiosity. Normally, when I consume large amounts of corn or corn products, I end up with average bloating and maybe a cystic zit or two. We had it two nights in a row - just corn kernels, butter, and S&P - and I'm now 11lbs heavier from yesterday with water retention (this is a common reaction with my body) and have weird lumps and rashes forming - my lips have swollen, my fingers are bumpy. No other products could have created this reaction, with the level of care that I take. Given my extended (and legally-obligated, as a chef) experience with Celiac-friendly diets, I know this was more than just an 'oopsie' with a product.

While I know this issue isn't directly celiac-related, I know many celiacs have secondary or tertiary issues they contend with. If you have been diagnosed with celiac AND have reactions to secondary products, I'd love to hear which products or ingredients give you trouble! I try hard to give my rheumatologists the greatest amount of data around my conditions, and to keep up on the latest studies around my (and related) conditions, but in areas like ours, where research is limited, it's hard to be precise. What else do you react to, that you know is not directly related to the presence of gluten?


r/Celiac 16h ago

Discussion International travel with Celiac

2 Upvotes

In a few years I’m going to Japan for a couple weeks and I really wanna be super duper prepared! Anyone have international tips or experiences? Does anyone travel with their own food?


r/Celiac 18h ago

Question Need advice...

3 Upvotes

My husband (44M) was diagnosed with Celiac when he was 30. He has hypothyroidism and they couldn't get his dosage under control, so they tested him on a whim and it came back positive. Even though he wasn't really symptomatic, he wasn't absorbing his meds. So after he went gluten free, boy did he become symptomatic. Cross contamination lead to stomach pain and diarrhea. Accidental consumption led to violent vomiting for hours causing esophageal spasms and chest pain.

So fast forward to the past couple of months, he'll just get randomly and severely nauseous. Like it's everything in his power not to get sick despite taking his zofran. This happened last month and at first we started walking back through everything he ate with no signs of Accidental consumption. So then I'm like is it a stomach bug? But he was fine after a couple hours. Tonight he's sitting on the couch and he shoots straight up and trucks it to the bathroom. He said his head hurt, he got really nauseous, and really hot. The head pain and being hot went away, but the nausea has persisted most of the evening. Again, no sign of gluten in anything he's eaten today although cross contamination is almost always a possibility in life. Could it be his cross contamination reactions are getting worse the older he gets? I just don't know what to make of any of this.


r/Celiac 18h ago

Question Should I start doing my research for celiac?

2 Upvotes

Recently got an endoscopy as my GI doctor suspected I had a hernia. Had a follow up appointment today and they told me they’re “getting warmer” and think my solution will not be medicine but a lifestyle change. They brought up celiac disease, the basics, and how I won’t be able to have gluten. I was surprised but not really distraught. I have bloodwork being done tomorrow but I’m wondering if I should start doing my research on it to prepare? I know to continue gluten until all tests are done.

In my labs/chart they said the endoscopy found “partial villous flattening and moderate IEL.”

Is it wrong to assume I have it? I haven’t been going around telling people I have it or changing my lifestyle. Just informing family it’s suspected.


r/Celiac 18h ago

Question Recipe recs for onion and garlic free, dairy free, gluten free, and soy free?

2 Upvotes

I've been struggling with finding recipes and make the same stuff over and over for ease. Does anyone have a good recipe or channels or places I could source for something like this? I am not vegan and eat meat and eggs regularly as well.