undiagnosed Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

[NoriTori]

Hi! I just wanted to start out by saying that gastro problems seem to run on both sides of my family as well as that I am of African descent which I know complicates potential diagnosis. My dad is always bloated and has a massive appetite (mostly) but somehow still very slim. My brother was always sick with something, we always figured food poisoning of some kind because he'd complain of stomach pain, nausea, vomiting, the works. Even when he ate a lot he remained underweight. It was to the point that our then GP, had to prescribe ensure which never worked. To this day he still has stomach problems and remains skinny (borderline but normal weight). As for me, I just had lots of allergies, "eczema" and an autoimmune disease, then later developed another in my teens. I didn't think any of it was connected until one year at thanksgiving I started experiencing almost immediate symptoms and google (forgive me) led me to food poisoning, and celiacs. I brushed them both off but did more research on celiac and symptoms continued. Some time later I asked for testing, IgE came back high-ish for gluten but all antibody tests were negative. That turned into allergy testing, and an endoscopy which both came back fine. The only thing that showed up on the endoscopy was slight irritation but no damage. I was told it could be an intolerance and went gluten free for a time and got significant better. Lost lots of weight, my stomach went down, bowel movements were more regular and not painful, and my eczema went away completely.

The current problem is I don't have the money to maintain a gluten free diet so I've been consuming it and in mass quantities :'). Almost every meal contains something with wheat in it and I've kept this up for a month now and am experiencing symptoms again. I'm bloated, my jeans don't fit as well, stomach cramps, boats of constipation, hungrier than usual, brain fog, fatigue, peeling skin on hands and feet, itchy skin all over and small blister bumps are popping up. I was diagnosed with dyshidrotic eczema and at one point had it on my elbows, knees, feet, and hands. I asked my GP if testing could be done to know for sure that it was eczema and not dermatitis herpetiformis but all she did was bring up pictures of severe forms of dermatitis herpetiformis an say it couldn't be that. I don't know what to do at this point outside of document symptoms and maybe request a new dermatologist. Has anyone had similar experiences with symptoms or dismissal by doctors?

[NoriTori]

Also forgot to add that I've had eczema and digestive problems my whole life and the only thing that cleared it up significantly was going gluten free

[trents]

Welcome to the forum, @NoriTori!

Some questions:

1. When you had testing done for celiac disease, whether antibody testing or biopsy, had you been eating normal amounts of gluten for weeks/months leading up to the testing?

2. Did your antibody testing include a "total IGA" test to check for IGA deficiency?

3. Have you considered the possibility that you have NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease? They share many of the same symptoms but NCGS does not damage the small bowel lining as does celiac disease. It is 10x more common that celiac disease.

dermatitis herpetiformis has a very distinct appearance with little pustules in the center of the bumps.

I would also add that it is not necessary to purchase expensive food specifically manufactured to be gluten free in order to eat gluten free. You can eat gluten free if you choose carefully from mainline food items.

 

[NoriTori]

1. Yes, but it was less than I’d normally eat, I felt sick and just restricted everything. I felt like it was something do with gluten so I’d started eating less of it as well - I had something wheat every other day

2. No, they did not. They tested for the 2 genes they usually test for and that was that

3. YES, but what pushes me away from it is the rashes and lots of pain with bms(this felt like glass was being pulled through me before I had the urge to go, but was how I always knew I had a bm soon). Every time I eat I get cramps and lose my appetite but force myself to eat, and there are times what I’ve eaten isn't ever enough. This wasn't a problem when I was gluten free

4. As for dermatitis herpetiformis, what made me think I had it was the rash on the tops of my feet, always itchy, always blistery. The itching never ceased and I would scratch until I drew blood. It did come and go on and off but for the months I was gluten free I never saw it and never had the itching. I now have just random blistering bumps everywhere and my skin itches randomly.

Currently, all my meals come from a communal space! We are allowed no kitchen access and they cook FOR you. As far as I know the food is bought in bulk within their budget so I don’t pay for food at all. There is no work around

[trents]

"Yes, but it was less than I’d normally eat, I felt sick and just restricted everything. I felt like it was something do with gluten so I’d started eating less of it as well - I had something wheat every other day"

In order for celiac testing to be valid, you need to be eating a significant amount of gluten daily for a significant amount of time. For purpose of reference, the recommendation for those who have been on a gluten free diet and then wish to get formal testing for celiac disease, they should be consuming at least 10g of gluten (about the amount in 4-6 slices of wheat bread) daily for at least two weeks leading up to the day of testing. Doesn't sound like you were even close to that.

"No, they did not. They tested for the 2 genes they usually test for and that was that"

Genetic testing is totally different than antibody testing. "Total IGA" has to do with blood antibody testing. Gene testing looks for the genes that create the potential for developing active celiac disease. Gene testing cannot be used to diagnose celiac disease but it has value as a rule out measure. If you don't have the either of the two genes that are most commonly associated with celiac disease, it is highly unlikely you have it. But you could still have NCGS if you know gluten causes problems.

"YES, but what pushes me away from it is the rashes and lots of pain with bms(this felt like glass was being pulled through me before I had the urge to go, but was how I always knew I had a bm soon). Every time I eat I get cramps and lose my appetite but force myself to eat, and there are times what I’ve eaten isn't ever enough. This wasn't a problem when I was gluten free"

These symptoms are also found in NCGS. As I said, NCGS and celiac disease share a lot of symptoms in common.

dermatitis herpetiformis can be difficult to biopsy and many dermatologists don't know how to do it correctly. The biopsy must be done during an active outbreak and the samples should be taken next to the rash blisters, not on them.

[Scott Adams]

Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.

[NoriTori]

@trents A gluten intolerance is a real possibility! I never ruled it out, but am keen on finding out the EXACT cause. I'd want testing done again to be sure it's not celiac, or SIBO (which I've considered) or other digestive disorder. Celiac seems the most pertinent considering its implications.

[trents]

@NoriTori, "gluten intolerance" is a general term that can refer to either celiac disease or NCGS. NCGS is often referred to as "gluten sensitivity" for short. Though, admittedly, there is still a great deal of inconsistency in the use of terms by the general public.

[NoriTori]

@Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.

[trents]

@NoriTori, you say, "No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. " We hear this all too often. Sloppy medical practice.

[Scott Adams]

11 hours ago, NoriTori said:

@Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.

Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.

[NoriTori]

@Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.