No crypt hyperplasia but there's lymphocytic infiltration and villi atrophy?

[Mina H]

Hi. My biopsy results just came back and it's a little confusing. Here's what the report says (I translated it myself from Japanese):

Biopsy report

-Chronic duodenitis

-The mucosa shows mild to moderate lymphocytic infiltration, and the villi are partially shortened and atrophic.

-Mild lymphocytic infiltration is seen in the surface and crypt epithelium.

-Crypt hyperplasia is not clearly present, but the findings are considered not inconsistent with celiac disease. (My note: Japanese people like this kind of statement)

-No findings of granulomas, specific infectious disease, or malignancy are observed
 

The GI said he didn't see anything special during the upper endoscopy but sent samples (not sure how many samples he took) for biopsy.

1. So, my question is, does the biopsy report makes sense? (Villi atrophy and lymphocytes are present, but no clear crypt hyperplasia? Can it still be considered MARSH 3a (because of villi atrophy?) and therefore suggestive of Celiac?
 
I have to say, althought not completely gluten free, recently, I've been trying to avoid gluten when cooking for myself but I would eat pizza or cheese cake or cookies or pasta now and then, maybe at least one-two times a week. I'm quite shocked because ever since I learned that I have a Celiac gene, althought not strict complete gluten free, I really tried not to eat bread or pasta or pizza every meal or everyday (even changed my soy souce to flour-free Tamari sauce), but it was enough to damage the villi. I think many Asian condiments contain gluten, even some vinegar in Japan...

2. Another question is the biopsy result alone enough to confirm I am Celiac, since getting a blood test is not readily available and expensive to do in the country I'm living in (Japan)?

Or should I continue eating gluten and wait 8 weeks and pay out-of-pocket for the antibodies test too (super expensive to me though ($500 USD, even endoscopy is practically free/cheap here) because the blood draw will be done by a clinic in Tokyo, but the sample has to be sent to a US lab)? Hoever, I live very far from Tokyo or large cities so there will also be travel costs.

***

Background Info:
I'm Asian female living in Japan where Celiac is thought to be very rare, so the blood test for antibodies is not readily available even through doctors. I'm not Japanese, by the way.

I learned several years ago that I am HLA-DQ2.5 positive (heterozygous).

Symptoms:
Recently, I've been feeling off whenever I ate something with gluten.
But the symptoms were vague like having to run into bathroom, constipation (I suppose more constipation than diarrhea), brain fog/dizziness, tiredness/daytime sleepiness, gassy/bloating or cramps, random abdominal pain (I thought it was due to ovulation or something). I thought it was IBS or something. I also had acid reflux sometimes, successfully controlled or healed through acid watcher's diet etc.

The most problematic symptom for me was acid reflux or LPR/silent reflux (I did a Peptest and there was pepsin detected in my saliva even when I didn't particularly felt heartburn!), I thought it was because I ate dark chocolate and drank spearmint tea everyday so stopped. Reflux is why I went to the GI to ask for uppper endoscopy.

[trents]

Welcome to this online community, @Mina H!

1. Apart from any consideration of crypt hyperplasia, villous atrophy is the hallmark of celiac disease. There are some other things that can cause villous atrophy such as an intolerance to cow's milk protein (CMP), chronic NSAID use, a certain blood pressure med, certain parasitic intestinal infections and a few other medical conditions but they are relatively unlikely compared to celiac disease being the cause, especially in view of the accompanying symptoms you list.

2. The endoscopy with biopsy is still considered to be the gold standard of celiac disease diagnosis, not blood antibody testing. Blood antibody testing is in some ways the "rule out" step for determining whether or not to move on to the second and more definitive stage of diagnosis, namely, the endoscopy/biopsy. There is a movement afoot to diagnose celiac disease based on blood antibody testing alone but only when the TTG-IGA score reach 10x mormal.

3. All the symptoms you describe are classic and scream of celiac disease.

If your healthcare system in Japan is unable or unwilling to grant you an official diagnosis based on the biopsy results and your symptoms, your next step would be to engage with the gluten free diet and see if your symptoms improve over a period of weeks/months.

[Mina H]

Thank you! That makes sense. The Japanese GI and the pathologist who reviewed my biopsy samples probably never met a Celiac patient before. The GI just told me to try my best at gluten free diet...

[trents]

The idea that celiac disease is primarily limited to those of European decent is a dated notion. We now know better. In the last three or four decades our knowledge of celiac disease and our understanding of the symptomology connected with it has broadened greatly. We now have better diagnostic tools and there is a greater awareness of gluten-related disorders in the medical community (and in the public) as a whole. It may not be true that celiac disease is rare in the Asian population if you include southwest Asian countries like India and Pakistan where it is rampant. I suspect that in time, the same will hold true for east Asia as the medical community there develops greater awareness of symptoms and begins to test for it more commonly. One thing that may have thrown a curve into all this is the possibility that race may skew the type of immune system response with the onset of celiac disease. For instance, there is some research that has shown people of black African decent with celiac disease are much less likely to show positive test results for the TTG-IGA antibody test than are people of European decent. Since the TTG-IGA is the most common antibody test  used when diagnosing celiac disease, a lot of blacks with celiac disease were being missed. 

I am including this article to help you get off on the right foot in eating gluten free: