On the cusp of facing a new life of managing a life with Celiac Disease

[MHavoc]

As with most of the people that come here, I have questions and need perspective/info from this wonderful community.  Some background, started having severe constipation that would not abate even with softners (not really fun to talk about), so I was able to finally get in to see my primary and she scheduled some blood work.  One of things she wanted to test for is Celiac Disease due to my sister having celiac disease since a young child.

Here are my test results:

MCHC = 31.4 so considered slightly low

TISSUE TRANSGLUTAMINASE AB, IGA = 78.8 H

So with that result, I was scheduled for an endoscope for confirmation of celiac disease, but I am very confused with the results:

Diagnosis
1. Duodenum, biopsy:
-No pathologic alteration.
2. Stomach, biopsy:
-Mild chronic inflammation with reactive epithelial change
-H. pylori not identified on immunostained section.
-No intestinal metaplasia or dysplasia

I am now scheduled to meet with a GI Specialist from the Celiac team, but that won't be until after the New Year.  I would appreciate thoughts about the biopsy report to understand whether it confirms the celiac disease as was indicated by the blood test results.

I have been gluten free for two weeks and it is a very difficult adjustment for me as an older 50+ person.

[Wheatwacked]

Hello @MHavoc, thank you for your question and welcome to the clinic.

First, has the contstipation abated with the GFD?

If your are pursuing further diagnostics you must continue to eat gluten.

Each lab has their own reference range for their test, but they indicate an H for high.  Typically anything above 11 is considered positive.

Mild chronic inflammation (gastritis) can interfere with intrinsic factor for B12 leading to low B12 causing low MCHC (anemia).

So what is causing your gastritis?  A high tTG IgA level generally indicates potential gastrointestinal problems most commonly associated with celiac disease.  Although the biopsy is the Gold Standard for diagnosis, not finding damage in the biopsy does not rule out Celiac Disease. It means they did not find damage where they looked.  The small intestine is over 20 feet long. Many here have been blood positive and biopsy negative, it just delays the diagnosis until you have enough damage to find and fit their diagnostic profile. The Ttg-iga is not only sensitive (90%) but highly specific (98%) and won’t show positive until the damage is severe.  It is estimated that 40% of first degree relatives of diagnosed Celiacs have undiagnosed Celiac Disease, so your sister is a big risk factor in whether you have it.

Are You Confused About Your Celiac Disease Lab Results?  This article explains it better and is quite readable.

Celiac Disease can cause deficient vitamin D.  Low vitamin D compromises the immune system.  Any other symptoms? liver enzymes?  Recent cold or flue? Celiac Disease and the malabsorption it causes through vitamin and mineral deficiencies can elicit symptoms not usually associated with Celiac Disease. Case in point maybe your gastritis and anemia.

 

Edited 2 hours ago by Wheatwacked