Gluten sensitivity inflammation small bowel biopsy

[monicca]

New member. Hoping to get feedback if possible. I have experienced about a 14lb weight loss. Visited GI and tested for celiac but results negative then concern for IBD but colposcopy normal. Then had egd and biopsy from small intestine revealed intraepithelial lymphocytosis (small bowel inflammation). Is this why I cant put weight back on? I will follow with gi next week. Could it be gluten sensitivity? I do have have a history of autoimmune (tested + for graves antibody but hyper thyroid under control). Also diagnosed with rosacea about 6 months ago. Have also been under alot of stress. not sure what to think.

[GFinDC]

Hi monicca,

Welcome to the forum!

It could be celiac disease.  Some people with celiac don't show up on the standard blood antibody tests.  You may be one of those cases.  Or it could be that you are early on in the disease process and the antibodies aren't showing up in your bloodstream yet.  The antibodies are mostly in the gut where they can do their work (damaging it).  Anyhow.  Are you still eating gluten?  The celiac testing requires us to continue eating gluten or the test results won't be accurate.

Celiac is an autoimmune condition and the chances of having another AI condition are higher with celiac.  Graves disease is something that people with celiac get more frequently than other people.

Celiac damages/destroys the villi lining of the small intestine.  Those villi are tiny fingers of tissue that absorb nutrients.  So weight loss and fatigue are both possible.  Other common symptoms are insomnia and brain fog, plus muscle or joint pain and dairy intolerance.  Sometimes people get a skin rash also.  GI type symptoms may or may not be present.  Typical GI symptoms would be bloating, diarrhea, constipation, dairy / lactose intolerance, gut or abdomen pain.  Any or none of these symptoms can be present.  So that makes celiac hard to recognize without testing.

Edited November 24, 2019 by GFinDC

[monicca]

Thanks GFinDC. Still eating some gluten but changed my cereal to gluten free. My negative celiac test was oct 1st so not sure how soon they will test me again. I am scared due to the weight loss. I dont want to keep shrinking! I am also starting to get depressed. My appt with GI is Dec4th. 

[NNowak]

The small bowel biopsy is more important in diagnosing Celiac than the bloodwork. Some people have an undetectable level of antibodies in their blood, the tests are not sensitive enough to pick up low levels in those who recently developed the disease, or in those who are IgA deficient. Celiac seems to be an imperfect science and quite individual with reaction and sensitivities. There is, however, a genetic screening for the Celiac genes, which will include/exclude that diagnosis. 
 

Having said that, you need to decide how you are going to regain your health. With what you’ve stated regarding your EGD, it seems safe to proceed with eliminating gluten from your diet. Dairy is an issue for anyone with GI issues, so avoid that until you feel healed. Most Celiacs cannot tolerate dairy at all. I can sneak a few bites of gluten-free ice cream here and there. Bone broth is very healing to the GI tract. A shake a day with organic coconut milk and organic coconut oil should help you feel better and add some quality calories with much needed nutrients to your diet.  Super greens are good to add in a shake (I use V8 juice). 
 

Do research on your condition and learn proper nutrition to guard against vitamin deficiencies.  Rest and heal. Good luck!

[monicca]

Thanks NNowak I see my GI on Dec 4th. So we will see what he has to say. This is all new to me and feel really overwhelmed! 

[cyclinglady]

Find out which celiac blood tests were given.  I test positive ONLY to the DGP IgA.  For a long time, I could not figure out why.  But it might have something to do with autoimmune thyroiditis or other autoimmune.

Also, if your doctor was not looking for celiac disease, he may not have obtained enough tissue samples.  Celiac disease damage can be patchy.  

And I have Rosacea too.  I think it is linked to autoimmune, specifically, thyroiditis.  In my family we are riddled with either Hashimoto’s or Graves.  My kid is doomed (no celiac disease yet).  My worst triggers are red wine, garlic and onions.  The same for my kid (though she has not had red wine yet).  

Finally, if celiac disease is firmly ruled out, consider a pill camera.  My little niece had one.  The camera found Crohn’s damage beyond the reach of both scopes.  She does not have celiac disease...yet (I hope she never does).  

 

Edited November 23, 2019 by cyclinglady

[monicca]

12 minutes ago, cyclinglady said:

Find out which celiac blood tests were given.  I test positive ONLY to the DGP IgA.  For a long time, I could not figure out why.  But it might have something to do with autoimmune thyroiditis or other autoimmune.

 

Hi, I had the tissue transglutaminase Ab, result was was <2. My immunoglobulin A was 313. What's DGP?

[cyclinglady]

4 hours ago, monicca said:

Hi, I had the tissue transglutaminase Ab, result was was <2. My immunoglobulin A was 313. What's DGP?

You did not receive the entire panel.  If my doctor had just ordered the TTG, my diagnosis would never have been caught.  I just went in for a screening colonoscopy (am over 50) and my GI noticed that I was anemic and had Hashimoto’s.  

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[GFinDC]

Hi,

DGP is deamidated gliaden peptide.  They can do DGP IgG and DGP IgA antibody tests.  The DGP type tests are supposed to be more accurate than the older tests.  The total or serum IgA is a test to determine if your body makes IgA antibodies at all.  Some people;s bodies do not make IgA.  So if you are IgA deficient, the IgA tests are not useful.