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 November 22, 2024 by Wheatwacked

[Scott Adams]

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. Re: tTG-IgA:

Quote

The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.

 

 

[trents]

Biopsy results can be negative despite positive serum antibody results for these reasons:

1. Early onset of celiac disease. Inflammation has been happening for long enough to cause damage to the small bowel lining that is observable in the biopsy sample.

2. The damage is in the part of the small bowel lining below the duodenum. The duodenum is the part of the small bowel immediately below the outlet of the stomach.

3. The damage is patchy and was missed by the one doing the biopsy. A thorough biopsy would include several samples taken from different areas of the duodenum. Not all scoping is done this thoroughly, unfortunately.

4. The positive serum antibody results are caused by some other medical problem, food or medication that mimics the inflammatory reaction typical of celiac disease.

[MHavoc]

Thank you all for the reply posts.  Yes, the constipation has abated.  I am not sure whether its due to having changed to a gluten-free diet or not, but I do think that there is a reasonable correlation.  I know that I will get over this eventually, but I am finding it hard not to lament missing all of my favorite foods that contain gluten.  Certainly, my health comes first... I guess I never realized how many things contain some element of wheat.  My sister has been living with celiac disease for most of her life, so I have someone who will share her favorite recipes.

The next step for me will be my appointment with a Gastroenterologist for the Celiac Team... I hope everyone has a safe and wonderful Thanksgiving!

[trents]

You as well.

[Scott Adams]

Happy Thanksgiving!