Welcome to r/Celiac!

Columbia University Medical Center's Celiac Disease Center is conducting the following study. Participants must have been diagnosed recently, within the past 4 months. Here are the details, in case you're interested or have questions. You should contact them directly.

The Celiac Disease Center at Columbia University (Celiac Center) in partnership with the National Institutes of Health (NIH), is conducting an exciting new study to learn about how to best manage celiac disease in adults who have been newly diagnosed.

You are eligible to participate if you are between the ages of 18 – 75 years with newly diagnosed biopsy-confirmed celiac disease (within the past 4 months), currently being treated by a physician affiliated with the Celiac Center, had an initial visit with a dietitian at the Celiac Center, and are not currently using a gluten detection technology that tests for gluten in urine or stool.

Volunteers will be randomly assigned to one of two groups: (1) Ongoing follow-up care with a dietitian or (2) Ongoing follow-up care with a dietitian plus gluten detection technology. Volunteers will be followed for one year to determine if and how their health changes which includes:

• Filling out surveys about diet, symptoms, mood, and quality of life at various time points.

• Have an endoscopy at the end of the study to see how well your intestine healed.

• Have a small amount of blood drawn and submit a urine sample during the first and final visits.

• In addition, the gluten technology group will be asked to use home urine kits to see if they had ::any exposures to gluten.

You will receive an iPad at the beginning of the trial. You can also earn up to an additional $565 for your participation. Those who did not get randomized to the technology arm will be provided with samples of the technology at the end of the study if desired. By participating in this project, you will be helping us to learn more about the clinical utility of gluten detection technology and how easy access to a dietitian with remote follow-ups can potentially help to manage celiac disease in those newly diagnosed. If interested, please contact us at GLUTECH@cumc.columbia.edu

We look forward to hearing from you,

Benjamin Lebwohl, MD, MS

Co-Principal Investigator, The GLUTECH Trial

Celiac Disease Center at Columbia University | 180 Fort Washington Avenue Suite 934 | New York, NY 10032 US

Hey everyone,

First time using this subreddit but wanted to post my experience with a potential drug for celiac.

I was given 3 doses of the drug earlier this year and have had 2 of the 3 gluten challenges so far.

I don't want to get hopes up but I had 0 reactions to drinking a gluten mix.

They are still not sure if it will be a frequent "vaccine" and or if it's for low amounts of gluten but either way it is hope.

If anyone else is trialing the drug let me know how your doing and if you have any questions fire away!

hi. i was recently diagnosed with celiac disease & i am korean american. i haven’t met a single korean person with this disease and it just breaks my heart. i feel so alone sometimes and limited to what i can eat. i never in my life had any type of food allergy and i am first in my family to experience this. i just had my first gluten attack (i accidentally ate gluten) and im feeling the effects of it even a few days after 🥲 i just wanted to post this to see if anyone else feels the same or has a similar experience with me… i have been making my own versions of foods i grew up with but obviously its way more expensive and harder to do. idk im thankful i don’t have any other crazy disease but still there are nights where it’s just really hard to cope.

(EDIT: I also made a facebook group called Asians with Celiac if you would like to support and join the feeling of just not being alone I would deeply appreciate it! 😭🫶🏼 LINK: https://www.facebook.com/share/5gJFhxh9AtruE7Jc/?mibextid=K35XfP)

When I encounter gluten I become insanely thirsty. I don’t always have dry mouth with it - only sometimes. This usually comes before any other symptoms.

I get my A1c and glucose checked every few months, as I am overweight and have a family history of DM type 2. Both have consistently been in normal range.

I was wondering if anyone has any input on this or if anyone knows any good resources regarding this where I can learn about it.

I am still kind of a newbie at all of this, as I was not diagnosed until I was an adult. Feel like it’s an endless path of learning, honestly.

I see my primary in a few weeks, and I will talk to her about it then, but I thought I would ask you guys.

Thank you!

Can anyone explain or give me some more information on how this is the case? For example, if twice a year I decide to eat gluten will it put the rest of the years progress out the window?

Anyone have any "at home" ramen recommendations that isnt just Lotus Foods? No offense to anyone who enjoys it but it just tastes awful to me haha. I tried another brand that I found online but their noodles were basically rubber. I prefer chicken and pork/tonkatsu ramen (and nothing too spicy) so any recommendations would be so helpful!

Celiac and on a strict gluten free diet for fifteen years. Recently developed allodynia. Anyone else had something like this?

Hey my siblings are visiting tomorrow and want to do some kind of Korean barbecue or hotpot. We all drive so anything drivable is cool. Im newly diagnosed so Im not sure what i can do or not yet. Are there any options for me? If not, any suggestions for an interactive meal for 3 ppl with not a lot of money? thanks!

Has anyone elses oreos been tasting like smarties? We had two packs a couple months ago that did and then had two good packs so I thought it was a temporary thing till we just opened a pack today and bam, weird oreos again.

My friend invited us to a wing restaurant and although I only eat at dedicated places, I looked at the menu just in case. All the sauces are well labelled with GF and vegan labels. The cauliflower wings proudly have a "made with our homemade gluten free batter!" description. Then they have Seitan. Basically pure gluten, lightly fried in the same fryer as the gluten free cauliflower wings. I mean, what is even the point lol 🥲 I checked find me gluten free for fun and it's full of bad reviews from people getting sick there. I feel like places that use pure gluten flour in the facility shouldn't be able to label anything gluten free, what do you guys think?

I’ve been GF since I was diagnosed about 2 years ago, and went dairy free just over a year ago. Overall, I have been feeling sooooo much better. My labs are improving, EGD looking better, etc. But one thing that’s gotten harder lately is eating.

I used to be able to just snack on a bunch of stuff throughout the day (whatever sounded good), but it’s been getting harder and harder to eat without feeling full and nauseous.

I’ve thought about getting nutrition shakes to help supplement what I can’t get in otherwise, but they’re super expensive.. Soylent seems great but I’d need three bottles a day at least and they’re $4 each ☠️

Hi all! I’ve been getting progressively sicker over the last few years and am wondering if this could be celiacs. It started with heart palpitations and syncope episodes. From there I was diagnosed with iron deficiency. I now have shortness of breath, muscle weakness, joint pain, random episodes of diarrhea, faintness, tingling and numbness and random muscle twitches. I have no energy to do anything and often struggle with heart palpitations. I just found out today I also have low phosphorous and potentially low vitamin d. I eat a normal diet and don’t know why I am low in basically everything to the point I’m having such severe symptoms. I don’t have any other medical issues, so now I’m thinking maybe a malabsorption issue? Does this sound like it could be celiac? I do frequently have gerd/burping/indigestion.

I got diagnosed with celiac disease at 9 years old and I’m now 24. 15 years, more than half of my life, almost two thirds of my life at this point. I went through the end of elementary school and all of middle school and high school (the years you really just want to be as normal as possible) on a gluten free diet. I’m used to not having cake at a birthday party or going to a restaurant with friends and just getting drinks. Explaining to people that there are no exceptions and it is that serious is like second nature to me at this point. It’s what I’m used to because it’s almost all I’ve ever known.

I always think I’ve come to terms with it and then I go to the grocery store and see the $7 bread or $12 pizza (the same brand sells non-gluten free for $6) or I go to a restaurant and can only eat 2-3 things on an extensive menu and I just want to cry. I’m currently working paycheck to paycheck, paying a reduced rent to my parents who I rent from, and am working until I can barely keep my eyes open. I want to move off of my parents property and back to my hometown, but medical expenses with my other chronic illnesses, overpriced food, and basic necessities are really making it hard.

I don’t like complaining because I am so used to it and it could be worse and at least I live in a place that will accommodate my dietary needs, but damn, it’s still so hard sometimes.

Some days I just want to spend less than $100 on groceries that would cost $15-$20 less if I didn’t have to be gluten free. I live in the US and with the upcoming inauguration next year, I’m terrified of what the economy might become. Will I be spending more on medical expenses? Will my $7 bread go up to $10? Will I ever be fully independent from my parents? Will I ever not get severe anxiety from eating food I haven’t made and packaged myself? Will I ever be able to afford good quality and healthy food to help promote a healthier life and lifestyle?

https://www.glutenfreewatchdog.org/news/trader-joes-responds-to-gluten-free-watchdogs-meeting-request-about-gluten-free-rolled-oats

Currently a college athlete at a school with very little food options. Usually at breakfast I can only eat yogurt and fruit as everything else is made on the same grill with toast etc being cooked on it all day. For lunch and dinner I can only get what they’re serving, which is usually rice and pork or chicken. There are no deserts and no other options. I don’t have enough money to buy food everyday and there is nothing the school wants to do to help. I have had numerous meetings with no success. Any tips or strategies will help. I am looking to gain weight. Thanks!

Anyone know if these are actually safe? Apparently the company says they don't contain gluten ingredients and are produced on clean lines, but they don't say gluten free and sometimes the ingredient soy lecithin (which is listed in the ingredients) sometimes contains gluten

I’ve noticed Single ingredient spices don’t seem to be certified GF but mixes are.

Club house ( not sure if they are in the US also) all of their mixes like:salad herbs, texmex, Cajun, lemon pepper etc are all certified CF with the Canadian celiac seal. But the one ingredient spice jars are not.

Do you just buy and trust. Or hope and see?

I’ve been getting glutened it seems constantly lately. Like 7/8 times in the last two weeks feel like garbage. I only eat at home from scratch nothing premade ( other then sausages that are GF) only thing left i can think is my spices I can’t narrow it down, I’ve been fine before so I thought but something that I’ve bought recently must be contaminated.

That or I’m getting it from a Tim Hortons coffee lid when at work.

Guess I’m going to throw out a ton of spices and try to find replacements. Any recommendations?

Basically the title. I've been having unexplained neuropathy symptoms for 6 months. Limbs that fall asleep easily/ pins and needles/ skin crawling/ itching, etc. I currently have very low iron and was put on a supplement. B12 serum level was normal, but I'm supplementing -- no idea if it's being absorbed. Curiously, I also have low phosphate.

My mom had celiac, so I'm starting to wonder if I might have developed it. The thing is, my normal diet is pretty low in gluten. (This wasn't conscious... It's just what made my neuropathic symptoms feel better). I want to get tested, but I worry I'll get a false negative on a blood test. I'm trying to eat more gluten now, but my neuropathy symptoms seem to be getting worse and it's distressing. Today my leg fell asleep from the hip down about 10 minutes after I had some cream of wheat. It felt difficult to walk (even though I still could.) Eventually it went away, but my god was it scary. I have pins and needles all day, itching, and it feels like my brain is glitching sometimes. I've also started having diarrhea 10x a day and constant nausea, so I haven't been able to hold anything in my system.

So my question is: can someone safely do a gluten challenge with neurological symptoms? Will the symptoms resolve once the is challenge over, or am I risking permanent damage? If it were just GI distress, I think I could tolerate it. The neuro stuff scares me, though, since nerves don't heal quickly or well.

What's been your experience?

I’m currently in a community college but I’m transferring to a four year university soon. I’m 20, I was diagnosed with celiac about a year ago. I’m a little worried about my social life taking a hit from this.

From my experience already it has been rough finding places to eat, especially when I’m with people who decide they want to go get food somewhere but the finest of dining I can do is a “burger with no bun”. So then it’s not a burger. It’s just beef. (and on the rare occasion that there are gluten free buns, I end up paying more money than a regular burger because obviously it’s my fault for having celiac, I should’ve known that both of my parents had autoimmune diseases before I was born) I usually just let my friends eat while I sit there and look pretty so I don’t hold them back from getting food.

I’m worried about parties considering what mostly EVERYONE will be drinking that evil glutenous beer. Getting celiac made me realize how so much of being social is BUILT ON CONSUMING GLUTEN. I’d like to think eventually I’ll try to even take someone on a date but how do I do that when almost all “gluten free” restaurants will most certainly make me eat gluten WITHOUT MY CONSENT.

I really need advice 😭. Being social is so important to me, and yes I know this isn’t going to kill my social life, but god it sucks so much sometimes. I’m sure you guys have known that just as much as me. I just want to be prepared to kick gluten in the ass when I go to my four year college.

I’ve had this in my freezer for 4 months probably… do you think it’s gone bad/moldy or is this just what it looks like? It’s my first time trying it so I don’t have a reference point.

Hi everyone looking for some insight as I (36F) recently had an endoscopy and some blood work to rule out celiac. My endoscopy showed increased intraepithelial lymphocytes & flattened villi only in the duodenal bulb but no where else in duodenum. I was also diagnosed with gastritis and esophagitis.

The tTG IgA was normal , ema was negative & IgA was within normal range .

My GI told me these results are inconclusive and to try a gluten free diet to see if that works.

I have had chronic diarrhea on and off since I was about 6 years old- otherwise no other symptoms. I only have an uncle with confirmed celiac diagnosis.

I’m afraid if I’m not diagnosed then I will always be in limbo not sure if I actually have celiac. Has anyone ever had a positive biopsy only in the bulb with negative blood work? Or have any idea where to go from here?

(Not dx. Going in for a colonoscopy/endoscopy in two days)

I've suffered with GI issues since I was 6/yo when I was dx w/acid reflux.

5 years ago severe labor-like stomach cramps started but they only happened approx. once or twice a month for around 2-3 days, and not strictly every month either. Around '21-'22 the pains stopped altogether and I assumed that whatever it was had passed; until it came back June of this year. I went to the ER with this pain in June. Had them again in September where I raw dogged it at home. Finally I had them October 31st where I went to the hospital again which was the catalyst in getting the double-scoped in two days.

Aside from the stomach cramps, my day-to-day GI symptoms are usually nausea/sour stomach, fullness, and excess gas - this is my "normal." However, sometimes I have days where I feel relatively symptom free. Or I'll have days where I start off w/o symptoms, end up feeling sick about midday, for the symptoms to relax again (usually due to medication). Today I woke up feeling fine with a normal appetite only to feel like garbage and rundown sometime after noon to currently feeling sick.

The symptoms often hit me in my sleep as well. Waking up in the middle of the night feeling sick and having a panic attack is becoming a regular thing for me.

Is it normal for celiac to wax and wane like this? Or is it a constant thing? I don't know why I'm even asking because I'll have answers (hopefully) in a couple days. I guess I'm just trying to find comfort in knowledge.

Thanks!

Shes showing a lot of signs of celiac and ive been trying to convince her to get screened but she says she could never live like this. Its frustrating because at her age with the symptoms and issues shes having its crazy to me thatd shed rather eat her bread than get screened. U even tried to convince her that it wasnt like she had to do anything about it if she got a positive and itd be helpful to know she had a negative.

This womans health is falling apart i want her to get some proper help, even if celiac isnt the answer, but its like she wants to be in pain

Hi all! I'm newly diagnosed with celiac disease. Got the news mid-October after an upper endoscopy + biopsy combo confirmed that the villi in my duodenum were gone. Like actually just gone. The exact wording on my lab results is "total loss of the villous structures." Apparently I've had celiac my whole life. I've got a lot of healing to do.

Since receiving the news, I think I've settled pretty well into my new gluten-free life. I'm only eating safe foods. I've replaced my lotions, face washes, lip balms, toothpaste, medications, and basically anything else that could possibly end up in my mouth, with products that I am at least 90% certain are GF. I have a paid subscription to "The Celiac App", and a copy of their Go/Whoa/No list on every device I own. I've also shared this list with my family, who have been very supportive and are, most of the time, voluntarily choosing to eat GF themselves now. We're also in the process of perfecting a system of organization in our kitchen that mitigates the risk of cross-contamination. This level of vigilance has been exhausting and sometimes demoralizing, but it's been well worth the effort. I think I'm looking and feeling healthier.

...Y'know. To a point. Otherwise I wouldn't be here writing this.

So here's the thing: despite all this effort and care, I feel like I'm still getting "glutened". "Glutening" is a new concept to me, but I think I'm becoming familiar to what it looks like for me: painful bloating and burping, intestinal gurgling, pounding heartbeat, shortness of breath, overheating, sweating, severe heartburn, water brash, headache, body aches, dizziness, an almost feverish/delirious feeling, complete inability to think, weakness, and sometimes vomiting and/or diarrhea. It kind of looks like a heart attack sometimes, which is a bit unsettling. It tends to last a few hours, and then I'm really worn out for a day or two, wanting to do nothing but sleep. After that I tend to feel more "normal" again. It's actually something I'd experienced somewhat frequently in the months leading to my diagnosis, and I can feel when it's coming, like a summer storm on the horizon. Now that I'm closely monitoring my diet, it rarely happens anymore. I believe I've been glutened once or twice since the diagnosis, and each time I've been able to pinpoint where or why it could have happened. And then I learn and adjust. Except for this time. I really don't know what did it to me this time.

So I'm wondering: is it possible to still be having these glutening episodes even without being exposed to gluten? It's pretty discouraging to still be feeling this way even after putting so much time and effort (and money!) into changing my lifestyle. It really interrupts my life and makes me so miserable. Has anyone else had this happen to them in the first months of healing their celiac-ravaged gut?

Obviously, it would be inappropriate to have anyone here try to analyze my situation and give me medical advice. I just want to know if this can still happen despite doing everything right.

First, I want to thank everyone in this community for their helpfulness and support. I've been reading almost all of the posts over the past couple of months, plus a bunch of older posts relevant to questions I've had, and I've learned a TON in advance of going GF.

I had decided to wait until after I got back from our trip to Japan, which was last week, before going GF. While I'm still happy with that choice, as I did get to have one of the best bowls of ramen in my life, before the trip started I was already "sick and tired of being sick and tired" and was looking forward to starting my GF diet upon our return.

This past Sunday I began in earnest- made some GF waffles to start the day, then some GF mac and cheese for lunch, and a GF dinner (can't remember what that was). But my body was still paying the price for all the gluten I had in the days prior.

Kept it up yesterday, though I seemed noticeably hungrier throughout the day. I think that may have been because when I ate gluten in the past my stomach would almost immediately feel bad, and so I couldn't stomach as much food as my body may have needed (particularly since I have some mild malabsorption going on at this point).

Now it's day 3, and I feel like I'm starting to notice some changes. My digestion issues seem to be improving fairly quickly, which is nice! And I don't feel quite so hungry despite eating the same breakfast today that I had yesterday.

My mind is still drifting towards thoughts of what I can no longer eat. Tomorrow we're having a work breakfast where breakfast burritos will be served, and that's going to have to be a hard pass for me. But even in the short amount of time I've been doing this I feel enough of an improvement that I'm encouraged to keep pushing forward and accepting that this will be the new normal.

Thanks again for all of your advice, wisdom, and compassion!

My 9 year old son got glutened yesterday, despite the fact that it was a normal day and I made all of his food.

Breakfast was some GF pancakes I made over the weekend and froze. Topped with Nutella and berries. I keep a special jar for him.

School lunch was Glutino crackers, packaged cheese string, GF turkey pepperoni, carrots, apple sauce, Greek yogurt, and a made good granola bar.

Dinner was a GF hotdog and bun (cooked in the air fryer, we only use it for GF foods) cucumbers, glass of milk. Bedtime snack was a banana.

I feel so panicked, like I'm fighting an invisible enemy. I decided to set aside a special cutting board for him. I washed the one I used, I can't recall if bread was recently used on it. But maybe my daughter had. It's wood, maybe gluten got into the grooves?

I hate this. My poor baby.

Should I get separate dishes? But what if they all get washed together? I don't really want to force my non-celiac daughter to a fully gluten free diet, but if this doesn't stop, we may need to :(

my partner and i have decided to spend some time in europe! we’ll have three months to travel around and my main priority is finding cities that are good for celiac. we live in a country where celiac is very hard and i’ve been constantly disabled. i’ve read all the subs here about italy and spain but would like to know if anyone has any specific suggestions. i assume big cities are better but are there some smaller cities/big towns out there are that are good too?

edit: will also be spending time in ireland and UK if you have suggestions for those!

Looking into Celiac for me ( long story of why I can't be tested right now) curious if others had issues with incomplete/ constipation issues.

Thanks.

My 13 year old boy has lost some weight in the last 6 months or so. His BMI went down from 19.63 a year ago to 16.48 now. Height has increased by 4 inches in the last year (to 5'8.75"), but weight has reduced (he's around 111 lbs/50.5 kgs currently). We thought it was just rapid height gain and not eating well that was making him skinny. Went to his pediatrician recently and she had bloodwork done.

His Celiac panel shows elevated value for "IgA w/reflex to TTG IgG Ab" as 403 mg/DL, against a normal range of 30-220. Other 3 values on the panel are normal (TTG antibodies IgA, Deaminated IgG and Deaminated IgA). Rest of the bloodwork is normal.

We were very concerned, but the doctor has advised increasing food/calorie intake for the next 6-8 weeks and see if his weight increases. Then repeat the bloodwork. And consult GI then if needed for endoscopy/biopsy etc.

I understand the high IgA is 2x and not 10x the normal value as would be expected with Celiac.

I am hoping the slightly elevated IgA is due to other reasons such as an infection etc. Also, the fact that he does not have any other apparent symptoms other than weight/BMI reduction or any deficiencies in the bloodwork. And his height has increased a lot in the last year, which would be difficult with celiac I believe?

Any similar experiences around this? I am especially concerned due to his young age and potential damage to the intestines etc. Should we try avoiding gluten for a couple weeks and see how it goes?

Note: We are in the US.

Celiac Panel results were as below:

IgA w/reflex to Tissue Transglutaminase IgG Ab: 403.00 High (30.00-220.00 (mg/dL))

Tissue Transglutaminase (TTG) Antibodies IgA: <0.5 (<0.5-14.9 (U/mL))

Deaminated Gliadin Antibody, IgG: 1.8 (<0.4-14.9 (U/mL))

Deaminated Gliadin Antibody, IgA: 2.5 (<0.2-14.9 (U/mL))

I've been diagnosed with celiac disease 7 months ago. Iga tga of 1900 and confirmed biopsy. I did blood test a month ago and it reduced to 60. But still my weight is exactly the same. Is this normal? I heard some people starts to gain weight after one or two months only.