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Test And Doctor

FairySprinkle

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FairySprinkle Rookie
FairySprinkle
Posted

Hi, how do I find a doctor who can test for gluten levels? Can a family doctor do this or does it have to be a specific specialist like an allergist doctor?

Also, how is this test done? Do they do a blood work and inside your butt?

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Guest Kalynn
Guest Kalynn
Posted
Hi, how do I find a doctor who can test for gluten levels? Can a family doctor do this or does it have to be a specific specialist like an allergist doctor?

Also, how is this test done? Do they do a blood work and inside your butt?

I don't know about all PCPs, but mine sent me to a GI doc and he ordered the blood test. I never had the colonoscopy done. I haven't found many (and believe me, I've seen many over the past year) docs that will readily admit that what you have is celiac disease or gluten intolerance.

I believe Enterolabs will allow you order your own tests. They have a website.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Oddly, because I have neurological damage from gluten, I was referred to a GI doc by my vitreoretinal surgeon! The GI doc was fantastic -- he said, let's do the bloodwork today. Do you want to know for sure if it's celiac? I said "yes" -- he said, then let's do the biopsy on Monday. (This was Thursday). It was all a piece of cake. Good luck to you. . . . Lynne

slpinsd Contributor
slpinsd
Posted

FairySprinkle: Where do you live?

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Louisville, KY -- if you live anywhere close, I would highly recommend this practice. My MD's name was Martin Mark. They have on staff a celiac specialist, Dr. Adler, who read and re-read my biopsies and bloodwork. They are awesome. BTW: Biopsies for celiac are down down your throat. They give you liquid to numb the back of your throat, give you some meds to make you sleepy, and a bite guard in your mouth. They thread the tub down your throat, through your stomach, and into your small intestine. My MD took 4 biopsy samples from the small intestine. I did, though, have a colonoscopy the same day, because I had some DEFINITE changes from the usual. I had IBS for the majority of my life, then simply stopped going. Really. Like once every 6-8 days was good. So they did the colonoscopy. I told someone on another thread -- if you have to have both, be advised: They do NOT think it's funny if you ask them that, if they're going to use the same tube, will the put it down your throat first. . . . Lynne

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      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
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      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. 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.    
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