Advice for pre-diagnosis

[Briezy]

Hello!

I am looking for some advise on what to do in the midst of being diagnosed. 

So far I have had blood tests and tested positive for Tissue Transglutaminase. I am due to have an endoscopy with biopsy in August and until then I will not receive a diagnosis of Celiac Disease.

I have had some serious stomach/GI issues for years and only now have had some light shed on the cause. I am even having my gallbladder removed next week due to these GI issues.

My question is: should I start cutting gluten out now, or should I wait for diagnosis? I have read on a few sites that cutting gluten now can in turn result in a false negative for some celiac testing. The thing is my stomach is in such bad shape right now that I'm almost exclusively living off of yogurt and rice bowls. Waiting a month like this might not be an option. I'm hoping my gallbladder removal will help mitigate some symptoms, but I'm not so sure. 

Please let me know if you have any advise. Thank you all!

[trents]

Welcome to the forum, Briezy!

Yes, it is true that reducing or eliminating gluten from your diet in the weeks leading up to either the serum antibody tests or the endoscopy/biopsy will compromise your test results. Antibody testing involves looking for inflammation markers (e.g., tTG-IGA) produced by the autoimmune reaction in the lining of the small bowel which is what defines celiac disease. The endoscopy/biopsy seeks to microscopically examine the villi that line the small bowel for signs of damage caused by the inflammation. If you remove gluten from your diet you eliminate the trigger of the inflammation and healing begins. Make no mistake about it, reducing or eliminating gluten from your diet before all testing is complete will compromise the results.

The Mayo Clinic pretest gluten challenge guidelines call for the daily consumption of the equivalent of two slices of wheat bread for 6-8 weeks leading up to the serum antibody testing and for at least 2 weeks leading up to the endoscopy/biopsy. 

Can you post the actual tTG-IGA test numbers along with the reference range for what the lab used for negative vs. positive? That will give us an idea if your tTG-IGA is marginally or strongly positive. If strongly positive then there is no real need for the endoscopy/biopsy IMO in order to arrive at a diagnosis of celiac disease.

I also question the advisability of having an endoscopy so soon after having your gallbladder removed. You will not even be fully recovered I would think. Makes me wonder if what was attributed to a bad gallbladder is actually due to celiac disease. What testing was done to confirm gallbladder disease? Did they find stones?

Edited July 13, 2022 by trents

[Briezy]

19 minutes ago, trents said:

Can you post the actual tTG-IGA test numbers along with the reference range for what the lab used for negative vs. positive?

Thank you so much for the response! My test results for my celiac panel are below:

TEST                                                 MY VALUE                       STANDARD RANGE                 + / -

Deamidated Gliadin Ab IgA               4.4 U/mL                           0.0 - 14.9 U/mL                        Negative

Transglutiminase (tTG) Ab, IgA          48.7 U/mL                          0.0 - 14.9 U/mL                       Positive

IgA total                                             195 mg/dL                         66 - 433 mg/dL                       Negative

 

I had an ultrasound that showed large gallstones and I've been having intermittent severe pain that I've been able to mitigate with eating low fat and small meals. My endo will be about 3 weeks after the surgery. I'm hesitant to change this as I'm very eager to get answers.

[trents]

Thanks for the additional information. Your tTG-IGA is moderately high. We do see them in the hundreds sometimes. But my hunch is that your score is high enough to rule out most other possible causes of elevated tTG-IGA besides celiac disease.

Edited July 13, 2022 by trents

[Scott Adams]

Technically you should keep eating around 2 slices per day until you get your endoscopy done, so I would not go gluten-free just yet.

If there is any way to postpone the gall bladder surgery, only if the doctor agrees of course, perhaps you should do that? I think gall bladder surgery is very common among celiacs before they discover they have it. It would be interesting to see if your symptoms go away on a gluten-free diet, and that you possibly don't need it removed.