Bloods and going forward

[EmilyRachael]

Hello, I’m new to the site having been told my bloods came back positive for coeliac disease 3 weeks ago. 
 

I was told I needed some biopsies of my small intestine for confirmation which they have booked for just under 3 weeks time. 
 

If my bloods are positive what is the reason for the biopsies? 
I’ve heard of people having positive bloods and then negative biopsy results but with all symptoms of coeliac disease which has then left them in limbo. 
 

My blood results are: 

Tissue transglutaminase IgA level 37.6 u/mL [< 7.0]; Tissue Transglutaminase IgA Antibodies (Coeliac Screen)
Anti-Tissue Transglutaminase Abs: POSITIVE (>10 U/mL)

 

I guess I’m just super nervous so questioning everything! Has anyone had blood results like mine but then negative biopsies- what do you do then? 
 

How likely are false positives? 
 

Thank you. 

[trents]

Statistically speaking, there is a small possibility that the antibody blood tests were falsely positive or that the positive is due to something other than celiac disease. That is why they do the endoscopy/biopsy. It is something to check the antibody scores against. Sometimes the bloods are positive and the biopsy negative and even visa versa but this is fairly unusual. The more ways you analyze something the more likely you are to come up with an accurate conclusion. If one is positive and the other negative the next logical step is to put yourself on a strict gluten free diet and see if the symptoms improve. However, you should not start a gluten-free diet until all testing is complete. You only have three weeks until the endoscopy/biopsy so that is good if you are struggling with symptoms. Many times the endoscopy/biopsy can't be booked for months, especially in the UK where, because of how you spelled "coeliac", I presume you live.

Edited October 12, 2023 by trents

[EmilyRachael]

8 minutes ago, trents said:

Statistically speaking, there is a small possibility that the antibody blood tests were falsely positive or that the positive is due to something other than celiac disease. That is why they do the endoscopy/biopsy. It is something to check the antibody scores against. Sometimes the bloods are positive and the biopsy negative and even visa versa but this is fairly unusual. The more ways you analyze something the more likely you are to come up with an accurate conclusion. If one is positive and the other negative the next logical step is to put yourself on a strict gluten free diet and see if the symptoms improve. However, you should not start a gluten-free diet until all testing is complete. You only have three weeks until the endoscopy/biopsy so that is good if you are struggling with symptoms. Many times the endoscopy/biopsy can't be booked for months, especially in the UK where, because of how you spelled "coeliac", I presume you live.

Thank you so much for your reply, yes I’m in the UK! The doctors expedited my biopsies as I’ve been really poorly and my stomach looks like I’m 9 months pregnant (I’m not!)

I’ve always struggled with stomach issues (which docs put down to IBS) but the last year has been a lot worse with it coming to a head the last few months and now I’m in constant pain. 
 

I appreciate your reply/ information. Thanks so much. 

[trents]

Please get back to us when you know the biopsy results.

[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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[knitty kitty]

Welcome to the forum, @EmilyRachael!

An endoscopy is done to check the damage done to the small intestine by the autoimmune response in Celiac Disease.  Much of the damage in early stages may be microscopic, so biopsies are taken for examination.  This initial endoscopy also gives a baseline with which to compare future endoscopies to check on healing or if problems arise.  

There's a correlation between high  tTG  levels and more serious intestinal damage.  

Intestinal damage results in malabsorption of vitamins and minerals, so correcting any nutritional deficiencies is important.  Discuss with your doctor and nutritionist about the benefits of supplementing essential vitamins and minerals while healing.  A good B Complex, extra Thiamine B1, magnesium, zinc, Vitamin D, and Vitamin C are some suggestions.  

Keep us posted on your progress!

P.S. I had the bloated tummy, too.  Poor digestion caused by CeD can cause lots of undigested carbohydrates to feed intestinal bacteria which produces lots of gas and bloating.  This is Small Intestinal Bacterial Overgrowth (SIBO).  The Autoimmune Protocol Diet is a Paleo diet that promotes healing in the digestive system.  Check out the book The Paleo Approach by Dr. Sarah Ballantyne.  I also supplemented with Benfotiamine, a form of Thiamine Vitamin B 1 that promotes intestinal healing.  Following this diet and taking Benfotiamine helped my stomach feel and look better quickly!  

Edited October 15, 2023 by knitty kitty
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