Testing Help

[LizzieF]

Hi everyone - I have been gluten free for 2+ years after doing some genetic testing that showed inability to process gluten and carrying a gene for celiac (I’ve had GI related issues for 20+ years that were diagnosed as IBS/lactose intolerance). After persistent low iron, new GI suggested we look at celiac. Endoscopy results noted the below. I have to add that I added gluten for about 12 days prior to my test (and was miserable in the process).

“The differential diagnosis includes celiac disease, but the degree of intraepithelial lymphocytes does not reach the threshold for Marsh 1 lesion.” Chrons/Colitis negative.

GI suggested I continue eating gluten (after a 3 day pause awaiting results) to do bloodwork. I ate gluten for another 1.5 weeks (about 4 weeks in total) and blood work came back normal. My symptoms however have continued to get worse with changes in bowl habits, sharp pains in the abdomen and nausea. 

I feel like I did not have gluten for enough time prior to my endoscopy for accurate results. What do you do in such a case? (Note: still pending follow up from GI)

[trents]

Welcome to the forum, @LizzieF!

Yes, I also question whether or not your exposure to gluten before either the endoscopy/biopsy or the antibody testing was long enough or intense enough to render valid test results. Guidelines for the "gluten challenge" have recently been revised to recommend more intense exposure: at least 10g of gluten (about the amount in 4-6 slices of wheat bread) daily for at least two weeks leading up to the day of the blood draw or the procedure. But frankly, I would certainly give it twice that long to be sure.

It is also very possible you are dealing with NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease. They share many of the same symptoms but NCGS does not damage the villous lining of the small bowel. Therefore, not antibodies are produced and nothing will show up on a biopsy either. There is no test for NCGS and it is 10x more common than celiac disease. Some experts believe NCGS can be a precursor to celiac disease. Celiac diseases must first be ruled out to arrive at a dx of NCGS.

[knitty kitty]

@LizzieF,

The anemia which can be caused by low iron can impede antibody production.  

NCGS can be a precursor of Celiac Disease, especially in those who already carry Celiac genes.  

Celiac is the only disease where you have to self harm to get a diagnosis.  

Do talk to your doctor about the updated gluten challenge requirements and a repeat endoscopy.

[trents]

@LizzieF, if you will be seeking repeat blood antibody testing after undergoing a more rigorous gluten challenge, make sure your physician orders the "total IGA" test to check for IGA deficiency. If you are IGA deficient, all other IGA test scores will be artificially low and this can result in false negatives.

Can you list the blood antibody tests that were already done, the scores along with the reference ranges?

[LizzieF]

@trents blood tests were IgA 47-310 normal range - mine was 120; TTG <15.0 antibody not detected, mine was <1.0.

[LizzieF]

@trents @knitty kitty would NCGS show some celiac in biopsy? 
 

 

[knitty kitty]

No.  The damage done to the lining of the intestines is caused by the autoimmune response of Celiac disease.  

People who have been off of gluten for an extended period may take longer to mount an autoimmune response.  Twelve days of gluten after two years off probably wasn't enough time and not sufficient gluten.  

[trents]

The "IgA 47-310 normal range" = is the total IGA test I mentioned in an earlier test. It goes by a number of names. He is not IGA deficient.

[LizzieF]

Thank you both for your insights. I think I’ll have to repeat testing in a few months and have a longer period of gluten consumption. 

[knitty kitty]

Keep us posted on your progress!