How important is a diagnosis?

[misslemon]

Tl;dr:  I have very clear signs of gluten sensitivity, and I’m following a gluten free diet. My test from LabCorp was negative before going gluten free, but celiac disease runs in my family. Are there any advantages to eating gluten again to get a diagnosis? I have a history of mild-moderate depression and anxiety that I’m sure are related on some level. 

 

The longer version:  My first cousin and my mother have celiac disease. Mom was diagnosed a couple of years ago around age 60 after having an unexplained rash on her leg that wouldn’t go away.  

I intended to get tested because I was a first degree relative. Looking back I had some mild gastrointestinal symptoms, but I didn’t think much of it. I did notice my neck would get quite itchy and red. BUT before I could get around to finding a doctor and getting tested, an extremely stressful takeover situation developed at my job, and I went into survival mode, then started job searching and planning a cross country move. This was over the course of about 8 months.

I continued eating gluten so that I could get tested, but never got around finding a primary care physician to get tested with. 

As the work stress reached its peak and we were about to move cross country, my wrists began aching and swelling, and it got worse each day over the course of a week. The pain began traveling up my arms.  I cut out gluten altogether for a couple of days and things started getting better.  

I scheduled an appointment with LabCorp for celiac screening. I went back to eating gluten for a couple of days beforehand, but I had only been off it for a few days, less than a week anyway. Those results came back negative and my Immunoglobulin A.

 

I immediately stopped eating gluten on June 8, 2023, and the symptoms went away over a few days to a little over a week. After about 3-4 weeks, I reintroduced gluten for 24-36 hours, and the joint paint started to resume, so I eliminated it for good. I have assumed I have NCGS.

 

Since then I have been quite careful about avoiding gluten with a couple of stumbles.. A few times I ate things I thought probably had some amount—Chili Cheese Fritos, granola with oats, and would notice my wrists or fingers aching, increased anxiety & depression, and a rash of small raised dots on the back of my hands.  Once I ate a breadstick and my hands had the rash for a week. (Won’t do that again, it was quite scary and I felt mentally terrible.)   

 

For another example, last week when I saw the rash again, less severe, and realized some flavored pork rinds I’d been eating had gluten. I’d consumed quite a lot of them over a week or two before noticing, but by the time I realized the problem, my mood had tanked and I was horribly depressed for a few days.

 

It seems like I probably have NCGS, but I sometimes wonder if the celiac screener from LabCorp was off because I wasn’t eating enough gluten. 

The question is, given how miserable I was from one breadstick, is there any real reason eat two slices of bread a day for weeks to pursue more reliable testing or a formal diagnosis from a doctor? Are there any long term advantages?

 

I’m committed to eating gluten free, but I guess I’d like to have an indication of how worried I should be about trace contamination and minute levels.  On the other hand, eating that much gluten would probably make me feel horribly depressed for a long time. 

 

My results on the Lab Corp were:

 

tTG IGA: < 2.   Scale: ❤️ is negative, 4-10 weak positive and >10 positive.

 

Immunoglobulin A, Qn,:   206, where 87-356 is the normal range.
Serum 01

 

I appreciate any insight and perspectives!

 

[knitty kitty]

Welcome to the forum, @misslemon!

You can get a genetic test for any of the genes known to cause Celiac Disease which would not require eating gluten.  Having the genes and improvement on a gluten free diet can be a diagnosis of Celiac Disease.  

You also stated you get a rash when you ate breadsticks.  That rash could be Dermatitis Herpetiformis which occurs in Celiac Disease.  A biopsy of skin next to a dermatitis herpetiformis blister can be taken, specially stained and examined for antigluten antibodies in the skin.  Dermatitis Herpetiformis is a diagnosis of Celiac Disease.

Anemia, Diabetes and Thiamine deficiency can affect antigluten antibody production in those with long-term undiagnosed untreated Celiac Disease.  False negatives on blood tests are possible in long standing untreated Celiac Disease.

You can have an endoscopy without a prior gluten challenge to take biopsies to examine for microscopic changes indicative of damage due to Celiac Disease.  

Celiac patients can have malabsorption problems that can result in serious health consequences.  One example is osteoporosis.  Carpal tunnel syndrome and peripheral neuropathy, anxiety and depression are other examples.  

With your strong family history of Celiac Disease and your symptoms, I suggest you at least get a genetic test.  

Keep us posted on your progress!

Edited March 4, 2024 by knitty kitty
Typo correction

[misslemon]

Thank you! This gives me some other ideas to consider!

[Scott Adams]

It's certainly possible that you were not eating enough gluten before the tests, and it's too bad they did not do a full panel and do other blood antibody tests as well.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.