Diagnosis confusion

[Hummer01]

Hi all, I've been experiencing some new chronic GI issues for about 2 years now and was leaning towards celiac being the answer, but now feeling very lost after a confusing diagnosis process. 

My symptoms have included things like severe bloating, diarrhea, mucus, abnormal colored stool, worsened depression/anxiety, etc. 

I had a very borderline TTG-IgA result (4 where <4 negative) last year while on a low-gluten diet. This year after a gluten challenge, I had a negative TTG-IgA but a positive EMA (1:160 where <1:10 negative). The EMA was not run last year so I don't have a comparison for that. I am not IgA deficient. The other panel tests were negative in both cases. 

At the beginning of the year I had the scope done while on the reduced-gluten diet (with a short gluten challenge) and nothing was found to suggest celiac. 

I had the scope repeated this month after the longer gluten challenge that also yielded the EMA result. The doctor stated that my duodenum was "drastically different" than the first scope and that "gluten is clearly doing something to me." She also said that she believed the pathology would come back positive. 

I just received the pathology report with the doctor's comments, and it shows "findings not consistent with celiac disease" and that she believes I may have NCGS. My understanding is that NCGS wouldn't cause a positive blood result or damage to my small intestine though. Just feeling so defeated and confused now, and would really appreciate thoughts from anyone here. Thank you for your time reading all of this! 

[trents]

Tell us about your "longer gluten challenge". Current guidelines for the gluten challenge are the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for at least 2 weeks leading up to the blood draw day or the scoping/biopsy. 

"I just received the pathology report with the doctor's comments, and it shows "findings not consistent with celiac disease" and that she believes I may have NCGS." Is this the same doctor who "stated that my duodenum was "drastically different" than the first scope and that "gluten is clearly doing something to me."?

There are other medical conditions that can cause elevated tTG-IGA: 

My suspicion, however, is that your gluten challenge wasn't rigorous enough and resulted in borderline test results.

[Hummer01]

Hi trents, thanks for the response.

I started the challenge the 2nd week of April with 2 slices of sandwich bread per day (tried to get a larger loaf size, each slice weighed 50g) and continued that through April/May/June up until my scope this past week. On weekends I had extra gluten foods like noodles, cookies, etc. But couldn't tolerate much more than the 2 slices during the workweek. I had hoped that doing this for ~9 weeks would be enough, since I only did 2 weeks for the first scope earlier this year. 

Yes, the doctor who did the actual scope and told me about what she saw immediately after is the same doctor who reviewed the pathology report. 

[trents]

A slice of bread weighing 50g isn't the same as 50g of gluten. Bread dough contains other components besides gluten.

At any rate, at the end of the day, the antidote for celiac disease and for NCGS is the same, life-long avoidance of gluten. My hunch is that you do have celiac disease but are in the early stages of it. Some experts in the field believe that NCGS can be a precursor to celiac disease so, if that is true, you may be in a transition phase.

In view of how this has unfolded for you, I would suggest going whole hog into a gluten free diet commitment and see what impact it has on your symptoms. This may be of help in getting a a jump start in eating gluten free: 

 

[Hummer01]

Oh yes, I figured 50g of bread would contain way less than that in gluten. I just meant to say that I tried to make my 2 daily slices count instead of 2 tiny Wonder bread slices haha. 

Thanks for the insight trents, I appreciate someone validating that what I'm going through isn't all in my head or something! This process has been so frustrating and confusing. 

I guess the only thing about not getting the "official" diagnosis is not knowing how strict to be with CC (in my early 20s trying to think about the long term effects) but I hope starting the diet will bring some relief either way. Thanks again. 

[trents]

That is one issue but the bigger issue may be the human tendency to rationalize it all away without an official diagnosis such that you keep falling off the gluten free bandwagon.

But there is the option of going for the gluten challenge in a more robust way and getting retested.

[Hummer01]

Hi all, just wanted to post an update. 

I have been gluten free for about 1.5 months now and seeing improvement already in the bathroom. 

Recently I had a visit with another GI doctor for a 2nd opinion. He said that while my blood tests and scope are not a "slam dunk" for celiac, he believes it's more likely than not that I have it. His advice was to stay with a celiac-level gluten free diet (no CC) for 6-12 months then retest to make sure TTG-IGA is still negative. He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac. 

Today I had a follow up with the original GI that performed the scope. She is confident it is NCGS and says I can still have gluten sometimes. When I asked about the visible duodenum damage, she said it is just "irritation" from gluten because the biopsies were negative. She also said that my positive EMA isn't valuable because it has "a high false positive rate." 

I guess I'm having trouble reconciling the totally different advice from these 2 GI's. I want to believe the new doctor more at this point because what he said just makes more sense to me, and he gave an actionable timeline for possible next steps. Feeling lost and disappointed at this point and wanted to write it down here in case anyone has input. Thank you. 

 

[trents]

"He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body?

"She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong!

This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test.

The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition.

The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article:

Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.

[Hummer01]

Hi trents, thanks for the response. 

The 2nd opinion doctor said that if my CRP is still elevated at that time, he would advise me to look at Crohns/UC or another autoimmune issue. The colonoscopy I had this year seemed to rule those 2 out for now so he still believed celiac may explain it. No previous doctors have suggested any explanation for it even after calling to tell me it was a concerning result. 

I guess it feels tough knowing I have positive blood testing, permissive genetics, and visible duodenum changes... and somehow it's NCGS instead of celiac. I'm still surprised the biopsies came back negative when the doctor was so sure they would be positive.

[Scott Adams]

I think @trents may be correct here, and you've caught celiac disease in its early stages. A gluten-free diet might be the safest approach.

[Hummer01]

Thanks for your input Scott, I appreciate it. Being gluten free so far has helped so I am going to stick with it and hope for continued improvement.

I remember reading about "latent celiac," where only EMA is positive, in a book someone recommended here. Wondering if that and/or early celiac (like you and trents said) is the answer. 

[Scott Adams]

Your blood test was not negative (TTG-IgA result - 4 where <4 negative), but looks borderline if above 4 is positive or weak positive, but you can still have celiac disease with negative blood test results, although it's not very common: 

Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/ 

Seronegative Celiac Disease - A Challenging Case:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/ 

Enteropathies with villous atrophy but negative coeliac serology in adults: current issues:
https://pubmed.ncbi.nlm.nih.gov/34764141/