Welcome to r/Celiac!

I'm 59 and was diagnosed in September. We're on a road trip from Minnesota to Arkansas and I was dreading the drive, because for years, I had been getting exhausted on drives of over an hour. I often have 300 mile drives to visit family, and I'd have to take one or two short naps to do it. I attributed it to age.

This time was different. We get the Iowa border, not tired. We get to the Missouri border, not tired. I get to Kansas City, and we stop, not because I was too tired to go on, but only because I'd have to sleep sometime, and if I stopped later, I'd run into 11:00 check out time. I've driven about 900 miles in two days without fatigue.

Also, for years, I've used a seat cushion while driving because otherwise I'd quickly get pain in my hip. I recently gave up the cushion because I didn't need it anymore. My guess is that I had a lot of inflammation that has gone away. Finding out I had celiac was one of the best things to happen to me.

I was a barista there for 5 years but it was long before my Celiac diagnosis and they disappeared from my state (GA) for YEARS but are slowly making a come back. From what I remember there's a decent amount of gluten flying around in there (cookie crumbles for both hot and cold drinks, baked goods, etc.)

Are there any tried and true drinks that others w/ Celiac here have had that isn't just plain coffee w/ cream and sugar? I really want a Caramel Highrise or a Hot Apple Blast.

Guys, are these gluten free??? I can’t tell. I’ve been eating one a day as a quick snack, but now I’m sick as hell. Am I glutening myself? I bought a 20 pack so full disclosure I’ll probably finish them, but help!!!!

Hey all! Later this year my family will be heading to a few places around the US and I figured I'd ask ahead of time if anyone has recommendations for cities that we'll be in. This is our first time back in the US since my son's diagnosis so I want to have things planned out ahead.

We will be in:

Indianapolis (North)

Salt Lake City

Jackson Hole

If you know of any good gluten free places, or places that take cross contamination seriously, I'd love to hear them! Thanks!

Hi All,

I recently did my taxes (in Canada <3), and my bookkeeper noticed I submitted receipts for my gluten-free foods with a letter from my doctor, etc. She called me to ask if I had ever applied for the disability tax credit because she had two clients who claimed the credit for their celiac disease diagnosis. I was shocked and asked if she was sure that her clients didn't have other underlying health issues, and she said they JUST had celiac disease. I have ADHD as well, so I am wondering if people are applying for the tax credit for their celiac correlating ADHD, or if you really can apply for the additional tax credit if you just have celiac. I feel almost embarrassed asking my doctor to look at the form. I have a government job that pays well and I'm pretty well educated. Like all folks with ADHD and celiac, life can be a bit more challenging, and more expensive but I wouldn't consider myself "disabled." Does anyone have any insight? Thanks so much! :)

My family is going down to Myrtle Beach for a week, and was wondering if anyone knows any good gf spots that my wife can eat?

Thanks in advance!

Just had my endoscopy, mostly for GERD symptoms but I checked with the doctor ahead of time that he would biopsy for Celiac as well, told him I tested positive for one of the genes and that my antibodies were a little high and he said for sure he'd check.

I guess my small intestine looked fine so he didn't take any biopsies, I'm pretty mad because I wanted to rule out Celiac for sure, but I guess this is good news? Am I justified in being upset about this or does this just mean I probably don't have Celiac and should consider myself lucky?

I was almost hoping I have it so I could find some answers, especially for my hair loss. Didn't even find anything that could be causing my GERD, just acid damage. Back to square one and so discouraged and hopeless about my future. I just want answers and I hate being dismissed before things are 100% ruled out.

Basically I got an endoscopy and my doctor visually saw diffuse blunting of the villi in my duodenum but somehow in the biopsy none was seen. I had a blood test 2 years ago that was negative and another negative a couple weeks ago but that time I was gluten free beforehand (we were hoping to catch elevated numbers as I had been eating gluten for years prior). They said I probably had a gluten sensitivity but couldn’t say for sure.

I went to my rheumatologist and she referred me to a well known GI doctor who treats more complex cases. She thinks I only feel better eating gluten free because it’s inflammatory and that I actually have microscopic colitis (due to increased lymphocytes that were seen in my colon) and wants him to do a new biopsy… however it seems he doesn’t take my insurance and I don’t know if it’s worth all that money just to got another potentially inconclusive answer. My last procedure was $800 and I don’t think I’ve got all the bills in yet🫠

Ultimately ik it’s a decision I have to weigh out on my own but just curious what your thoughts are.

Here’s the ingredients:

Sugar, Salt, Dehydrated Garlic and Onion, Spice, Dehydrated Bell Pepper (Sodium Sulfite to Promote Color Retention), Propylene Glycol Alginate, Xanthan Gum, Citric Acid.

There’s no gluten free label, but nothing seems too suspicious except “spice” so just wanted to get an idea!

I’ll admit I had not checked the label recently, but I was so surprised today to see oats in the Canyon Bakehouse breads. I looked at the white bread and the ancient grains, not frozen.

I’m positive that there haven’t always been oats in this product, because I react to oats and I used to scour labels before I bought things. I don’t usually buy it but I’d picked up a loaf as a treat last week, because I wanted the big soft bread for once, and I could not figure out why I’ve been feeling so awful. I was looking at everything but the bread, because I assumed it was safe.

Well, you know what they say about assumptions. It’s on me for not looking at the label. What a bummer. At least I know what to stop eating so I can feel better.

Edited to add: I just checked the frozen bread at my local store and none of the frozen ones had oats. Maybe it’s just the non-frozen?

This is my lunch and likely half of my dinner lol. Inflation has made everything much worse. I wish I could get approved for foodstamps but apparently celiac disease and low income isn’t enough to get approved.

Any cheap gluten free options anyone knows about? I’m talking like super cheap

I keep seeing posts mentioning "other people who do not believe in celiac disease"

I don't understand... why?

I’m not a doctor, just getting that out of the way.

My biggest symptom from celiac has been insomnia. I would wake many times in the night and unable to fall back asleep in the mornings.

I got decent relief from probiotics. I also got decent relief from Mirtazapine (antidepressant). I also got good relief from a certain diet.

The certain diet is low histamine diet. I was recently diagnosed and I tried bone broth in an attempt to heal my gut faster, it upset my stomach. Then I looked into what would do that which is in the broth. Histamine came up and it’s a common cause for insomnia.

Probiotic strains that are generally found in supplements reduce histamine production by bacteria in the gut, so it makes sense that probiotics helped me.

Mirtazapine acts as an antihistamine along with antidepressant so that makes sense too.

Stress makes my insomnia way worse. Stress causes Mast cells to release histamine.

Undiagnosed celiac is associated with histamine intolerance because it can mess with the creation of DAO enzymes that break down histamines.

I’ve been taking DAO enzyme supplements and following a low histamine diet, along with Mirtazapine and probiotics, and my insomnia is much improved. Hopefully it will continue to get better as I heal.

Wanted to throw this out there in case anyone was having the same issue.

Has anyone gotten diagnosed with celiac based purely off of low iron?

I’ve had low iron for years, and the only way to keep it up at a normal level (only just at that level too by the way) is to take daily iron tablets that are quite expensive. I’ve finally changed doctors to one that’s actually trying to figure out why I have such low iron (I have a very healthy diet and don’t have particularly heavy cycles) and she’s gotten me tested for celiac. I’m waiting for the results, but I was just wondering if anyone else got diagnosed with celiac based purely off of low iron (I don’t have any other symptoms)? I’m guessing the doctor made the correlation between the fact that celiac is gastrointestinal, and most likely my low iron is because I’m having trouble absorbing it gastrointestinally.

I went to a restaurant & ordered off their “gluten friendly” menu. I’ve eaten there before, no problem.

This time, I was served a gluten tortilla instead of a corn tortilla. I ate about 3/4 of the wrong tortilla before I figured it out.

It’s been a full week, and I’m still miserable. Surprisingly, I haven’t broken out in the DH rash. I’m taking prednisone for something else, so I’m wondering if that’s why. I’m allergic to Dapsone.

But my gut (lower intestines) are cramping. It’s bad enough that I can see my gut spasm. I’ve been doing a quasi-liquid diet (mostly soups, smoothies & yogurts). Every time I try to eat something somewhat solid, I still feel ill. I ate half of a gluten-free muffin today and almost barfed. I just spent an hour crying on the toilet.

I’ve got a colonoscopy next week, so I have to come off my probiotics and pain pills for the next 7 days. I’m already suffering. Can’t wait for it all to get worse.

Going back on a full liquid diet until after my colonoscopy.

Hi all, today I found out I tested positive on the Endomysial Antibody IgA and tTG IgA blood tests. My general practitioner said that I tested positive for celiac and need to see a gastro for a biopsy to confirm, and keep eating gluten for an accurate result.

However, the lead time for an appointment in 6 months!! I got tested because I’ve been having horrible bowel symptoms and I don’t want to be in this pain needlessly. The gastro office receptionists can’t give me any advice, my general practitioner says she doesn’t know: Can I stop eating gluten now to try and feel better then restart 6 weeks before my appointment?

I've done celiac screening blood test and endoscopy/colonoscopy biopsy (only showed mild chronic gastritis) and had negative results but I still suspect I have it just because of the malabsorption signs and high ferritin levels and the fact that I have hashimotos. In both tests , I was on a gluten-free diet and tested negative. I think I should have ate gluten but my family doc says it would show the antibodies anyway if I really had it.

I've been very gluten restrictive for past 10 months but I'm suffering severely from symptoms like nausea, shaking/internal vibrations, constipation, burning chest/throat, tinnitus, etc.

Would this be happening or do celiac people usually have less symptoms when they are gluten-free?

I'm losing a lot of weight (I've lost 45lbs over past 9 months). I'm just not sure if I can be this symptomatic if I have Celiac while being this gluten-restrictive.

What do you think? Do some of these symptoms not sound like Celiac?

This was my blood result.

https://imgur.com/a/e7p7MEA

I also had high hydrogen/methane gas from sibo breath test

I've been mostly gluten free for like 6-7 years now, started small, then got to one cookie is okay, then ofc NOT, thenfuck beer is not okay etc. Suspected celiac, but def gluten intolerant as I react from very small amounts. But then last year after still having symptoms of occasional IBS and going to a project with another celiac we reacted almost exactly the same to cross contamination of very small amounts. And well yeah. I gave up on a proper test as I heard you need to eat gluten consistently for that to work, but since I get crazy bloating and stabbing cramps from cross contamination and after being much more strict for sneaky gluten since that project my IBS is very rare now.

This post was prompted after some sneaky gluten cross contamination today, took some antispasm meds, tulsi, ginger, peppermint, lied down for a while and yeah it's been like 6-8h since the suspect food and I'm fine-ish pain wise. But yeah family gathering yesterday where I bloated up, but no pain, coul have been something more, but then today some leftovers and idk it compunded or something :/ hate this stuff, esp after being quite good for a while and then the sneaky gluten gets somewhere.

This possibly has been asked already:

How old were you when you got diagnosed with celiac? Especially if you were older how hard was it to change diet?

I was diagnosed in my late 40's and still find it hard though I manage ok and my blood values have gone down. But still not optimal.

I got diagnosed with celiac when I was 7 and I'm now 28 years old. I've always had weight issues, slower metabolism. Brother has celiac but a higher metabolism. But I was on track to losing a good amount of weight back in college (2016-2018) and that stopped once I got into an abusive relationship (I'm good now). But that was 2019 when it ended. I started losing a little bit but got into a happy relationship and I know happy weight is a thing.

Over the past two years I've gained over 30 pounds in belly area and my neck. I get blood tests every year and slowly my tSH4 levels have been increasing. My new doctor says it's normal for my age. I don't believe her.

I'm also on the Liletta IUD and everytime I've gotten back on birth control I gain about 10 pounds but then I lose it within 6 months, it's been close to a year and a half now since I got on it.

I'm so lost as to the weight gain. I really don't drink anymore, I exercise, I drink water.

My dad has celiac , his father has celiac but neither my brother or I have celiac. I’ve been tested twice , one by blood with I was in highschool and once again by stomach biopsy two years ago. How is it possible that both my dad and his grandfather have it but my brother or I don’t.

I have chronic hives and GI issues and am getting an endoscopy in a week. I told my MD that the hives are better when I don't eat gluten. I've been strictly gluten free for 2 months now, going on 3 months. My IGA test came back <0.5 and IGA serum test came back at 260 (this test was done last week, and I have been gluten free since late January).

From looking at the posts on this forum, it looks like people usually eat gluten 2 weeks before endoscopy to have an accurate reading of a celiac biopsy. Can I still have an accurate reading with 1 week of eating gluten?

It sucks I had to find out about the gluten challenge this way, since I told my GI MD about gluten-free and there was no mention of a gluten challenge. I'm not really informed with celiac so I would appreciate any info on this topic. Thanks

I am kind of confused. I went to see my GI today and I got a H. pyolri test (however u spell it) and a celiac test. I remember seeing my past results from 1-2 years ago for celiac and it tested for IgA, but not IgG. It was negative, but those tests didnt show IgG. Is there a big difference between those two? I'm just confused as to why I'm getting tested for those two now when I only got one tested last time.

I once more see no test for celiac on my results 🫠 it got lost the first time. I’m just confused where it went.

After the gluten challenge, my test results are in and my Dr diagnosed me with NCGS. I know it’s not celiac but other than the villi damage, my symptoms are pretty much the same and vary from mild to severe (intense joint pain, constant nausea and vomiting, migraines, b12 + iron anemia, vit D deficiency, peripheral neuropathy and depression). He told me to stop gluten altogether. He also found out I have EoE and I have to cut out not only gluten but soy, dairy, eggs, fish and nuts. I’m also allergic to pork. I know I can ask the EoE forum but I was wondering if you guys had any ideas that could help. I’m looking for snacks, store-bought foods or quick and easy prepped in advance ideas.

I’m going there soon and I wanna know in advance just in case.

Hi all,

My husband used to love sleeping with a buckwheat pillow, but gave it up due to worries about the hulls potentially being cross contaminated, and having that so close to our faces/mouths.

Does anyone know a buckwheat pillow that is reliably gf? Or have you tried something similar that gives you a comparable feel (millet? plastic pellets?)? Looking for brands in Europe or the US. Thanks!

I have been GF for 3 years, under the direction of my regular Dr for IBS. Was referred to GI, who wanted to test for celiac, but said I need to eat wheat/gluten for 8 weeks first. She sent me to an allergist who determined it is not a wheat allergy and recommended I get tested for celiac. She sent me to a nutritionist, who recommended I get tested for celiac. She said my reactions are pretty severe and that it would be rare for someone with NCGS to react the way I do. My GI Dr tested me for a genetic marker and it was negative, so she said my chances of having celiac are less than 1%. She has left it up to me to decide if I want to eat wheat/gluten for 8 weeks and get the tests done, or just skip it and continue as I have. Is an official diagnosis worth the misery? Especially if my genetic testing shows it is unlikely?

I've been a celiac for almost 10 years now and need the perspective of other afflicted.

Last week I was either glutened really badly or the stomach probiotic has messed with my system.

This would be the longest time I've been effected by gluten since starting the gluten free life and wanted to know if anyone else has experienced this.