Thursday, May 3, 2012

Q & A on Testing for Celiac and Gluten Intolerance

Q: I would like to have my child tested for gluten sensitivities. What test do you recommend and where can she get it?

A: If you are doing testing with your pediatrician below are the tests for celiac/gluten intolerance that are most important to run. Of course discuss this with them and try to get their opinion.

1) TTG (Tissue Transglutaminase) this is the most accurate test for celiac disease. The Celiac Disease Center of Columbia runs a panel of several tests to determine whether a person has celiac. They report that this is the most accurate of the antibody tests.
2) Gliadin Antibody (IGG) this tells about celiac but also suggests gluten intolerance. Basically if you have high levels of these you may or may not have celiac but people with high levels get better from gluten free diet according to a gastrointestinal doctor I spoke with.

Running and reading the tests is complicated. To read more about this issue, read the New York Times Article Confirming a Diagnosis of Celiac Disease.

I would STRONGLY recommend going to a GI doctor or the Celiac Disease Center and finding out if your child has the genes for celiac as antibody testing is often negative in children as it takes years to develop these antibodies. At a parent get together, one parent of a young child with celiac told of their frustration of accurate testing. Their daughter tested negative for celiac three times. The fourth time, in the ICU she tested positive for celiac. They were so disappointed at how sick she had to get before a diagnosis was made.

Running the genetics can not diagnose celiac, but it can indicate whether celiac is a possibility. In our case, all antibody testing was negative but we were positive for the genes. If our GI doctor hadn't done the genetics for celiac we never would have figured out that celiac was a factor in so many of our families chronic health issues.

If the doctor is doing blood work it is a good idea to do some nutritional levels to determine if absorption of nutrients is a factor. Here are basic tests that were run for my children by Dr. Fred Pesctore, who does very thorough nutritional testing for children and adults...

3) vitamin d
4) b12 panel
5) zinc
6) copper

Many mainstream doctors work in a "death and disease" model so their knowledge of vitamins and food intolerances is limited . But if doctors are running bloodwork anyway it is nice if they do these tests at the same time to get the most comprehensive picture to see if absorption is an issue. But, if your doctor cannot run the vitamin tests JUST HAVE THEM RUN CELIAC TESTS and vitamin D!

THE BEST TEST IS A TRIAL OF A GLUTEN FREE DIET FOR A PERIOD OF TIME AFTER ALL BLOODWORK HAS BEEN COMPLETED. But, you really need the official testing and results to be completed to do this kind of trial.

Here is a link to all the tests our alternative doctor ran--but a lot of these can be done by quest and your pediatrician...
Mainstream and Alternative Testing

Here are links to the doctors that can do these tests:

Celiac Disease Center at Columbia University
Harkness Pavilion
180 Fort Washington Avenue
Suite 934
New York, NY 10032
Tel (212) 342-4529
Fax (212) 342-0447
Email: celiac@columbia.edu

The Celiac Disease Center can do full celiac panel including genetics. They are very good at diagnosing celiac disease. Although they are starting to accept and do research on gluten intolerance, their tests are more geared toward celiac disease so they can sometimes miss gluten intolerance but they are amazing at doing the comprehensive panel for celiac disease that includes genetics. Different doctors at the Celiac Disease Center take different insurance so you can tell them your insurance company and they can recommend the doctor who will accept your insurance.

Dr. Fred Pescatore
369 Lexington Ave
New York, NY 10017
(212) 779-2944

Dr. Fred Pescatore is a doctor who practices nutritional medicine. He does both mainstream and alternative tests for food allergies, celiac and gluten intolerance. Dr. Pescatore's food allergy testing REALLY helped us figure out food sensitivities. He does not take insurance but you can submit bills to your insurance. Some testing is covered through insurance but the ALCAT test is not covered by insurance.
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More info...

Below is a link to an article in the Official Journal of the American Academy of Pediatrics called Range of Neurologic Disorders in Patients with Celiac Disease about the connection between neurological issues (hypotonia, ADHD, learning disorders and headaches) and celiac. What is important is figure 2 which shows how much more these neurological issues are present in patients with celiac disease. Not everyone with these issues has celiac but for sure there is a connection between nutrient malabsorption and these conditions. If you are going to your GP to request testing for celiac disease, I would recommend bringing them this article to review and discussing the symptoms you have. Also, even though celiac is a GI disease often it is "silent" and there are no obvious gastrointestinal symptoms. Instead the symptoms are from low nutrients--which is why children with developmental issues like hypotonia and ADHD need to be tested.

2 comments:

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