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Mamaof5

Accurate Testing?

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Hello, Everyone. I have a question I'm hoping someone will know the answer to. I put myself on an exclusion diet a couple of months ago because I was tired of dealing with chronic migrains. A few days into the diet I noticed that some of the digestion and "thyroid" issues that I had been dealing with also started getting better. I have noticed that both milk and wheat bring many of those symptoms back. I have now been gluten free for a month and plan on adding it back in one more time so I can have more documentation to bring to my doctor. I want to be tested for Celiac because I am concerned for a couple of my children who exhibit many of the symptoms I've had since infancy (chronic diahrea/constipation, bloating, gas, nausea, failure to thrive, ect.). At the same time I don't want to add gluten back into my diet for long because I truley do feel as though I am on the road to recovery, and I don't want to go back to feeling the way I was before. How long do I need to glutenize myself before I can get accurate testing? Thanks to anyone who can point me in the right direction.

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From what I've read on this forum, the gluten challenge lasts from one to three months. You have to ingest it long enough for your body to build up antibodies to show up in your labs.

You may also consider genetic testing because that can be done whether you're eating gluten or not, and would also indicate your being at risk (or not) for celiac disease. Here is a link to the article "Ten Facts About Celiac Disease Genetic Testing"

http://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

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The University of Chicago Celiac Disease Center says you should be eating gluten for four to eight weeks before testing if you have been eating gluten-free for awhile. You can go to their website for a lot of good info.

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You may also consider genetic testing because that can be done whether you're eating gluten or not, and would also indicate your being at risk (or not) for celiac disease. Here is a link to the article "Ten Facts About Celiac Disease Genetic Testing"

MY COMMENTS IN CAPS:

Here are ten facts you should know and remember about Celiac genetic testing.

1.Genetic testing can help determine your risk as well as your children's risk.

NONSENSE. AT THIS POINT THE ONLY GENETIC TESTING THAT CAN BE DONE TAKES INTO ACCOUNT HLA HAPLOTYPES. YOU HAVE MORE GENETIC INFORMATION ABOUT RISK, IF YOU HAVE A PRIMARY RELATIVE WHO HAS BEEN DIAGNOSED WITH CELIAC DISEASE.

2.Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results.

TRUE. ALTHOUGH, AT THIS POINT, I WOULD ARGUE YOU NEED TO GO TO A TRAINED GENETICIST OR GENETIC COUNSELOR TO GET A DECENT INTERPRETATION. THERE'S A LOT OF MISINFORMATION OUT THERE.

3.Genetic testing is not affected by diet. You can be eating gluten or on a gluten free diet. Blood tests for celiac disease antibodies, however, need to be done while eating gluten. They can become negative within a few weeks of restricting gluten so if you are going to get the diagnostic antibody blood tests don't begin a gluten free or restricted diet before being tested.

TRUE, BUT IRRELEVANT. IF THERE WAS A 'GENE' FOR CELIAC DISEASE, THIS WOULD BE MEANINGFUL. SINCE THERE IS NOT, THE ONLY WAY TO OBTAIN AN ACCURATE DIAGNOSIS IS TO CONTINUE EATING GLUTEN AND HAVE THE CELIAC BLOOD PANEL PERFORMED.

4.Some insurance companies do not pay for the Celiac genetic test and almost all who do require pre-authorization first. The following diagnostic codes are helpful when requesting insurance coverage: 579.0 (Celiac disease); V18.59 (family history of GI disease); and/or V84.89 (genetic susceptibility to disease).

TRUE. AND THERE IS GOOD REASON FOR THIS. THERE IS NO DIAGNOSTIC GENETIC TEST FOR CELIAC DISEASE THAT IS MORE ACCURATE THAN THE STANDARD CELIAC BLOOD PANEL.

5.Some laboratories do not perform the all of the necessary components of the test to completely exclude the possible genetic risk of Celiac disease and most don't test for or report the other gluten sensitive DQ patterns. Before you accept that have a negative test you need to know if your test included both the alpha and beta subunits of HLA DQ or did they just perform the beta typing.

KIND OF TRUE, BUT SINCE THE 'NECESSARY COMPONENTS' ARE NOT DEFINITIVE, THERE IS CONSIDERABLE DEBATE ABOUT THEIR RELEVANCE.

6.In some rare individuals, especially some men, a negative genetic test may not exclude the possibility of celiac disease anymore than a negative blood test. Men more commonly have negative genetic tests and blood tests, especially older men with long-standing severe disease.

WHO KNOWS WHAT THIS MEANS? I SUPPOSE IT MAY CONTAIN FACTUAL INFORMATION, BUT SINCE THE HLA-HAPLOTYPES ARE OF QUESTIONABLE VALUE

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A lot of people have found www.enterolab.com to be helpful for determining food intolerances. You don't have to go through a gluten trial.

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gfb, I still have to disagree. There is a benefit in that according to everything I have read a NEGATIVE TEST showing none of the markers excludes celiac disease. This means to me that the genetic testing DOES indeed have a benefit.

Mama,

My dr. accepted my Enterolab results (see my signature) in conjunction with a positive dietary response since all of my blood work came back negative (entirely too common). gfb is correct that the genetic testing does not diagnose celiac disease, but it does help (especially if testing your children) you be aware that there is a risk factor.

Now as far as gluten and/or dairy sensitivity, it has been demonstrated in multiple studies that you can have a gluten intolerance without having Celiac disease. The benefits of an official diagnosis are several: A medically necessary food or diet can be written towards medical expenses at tax time under some circumstances, it also can help pull the ADA into play for you with an employer who is not willing to make reasonable accomodations necessary to help you deal with gastro issues, it can also assist in getting other testing ordered that may be covered by insurance which would not otherwise be covered, including referral to a clinical nutriotionist to assist in diagnosing and treating secondary or primary nutritional deficiencies which are very common in people with Celiac Disease.

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gfb, I still have to disagree. There is a benefit in that according to everything I have read a NEGATIVE TEST showing none of the markers excludes celiac disease. This means to me that the genetic testing DOES indeed have a benefit.

I should begin by saying that I do believe it is beneficial to have the results of genetic testing. However, it is not true that one cannot develop celiac disease without having at least one of the known (in the US) genetic markers. European doctors recognize a few additional markers and from what I've read, Asian celiacs have different markers as well.

My granddaughter Carly has celiac disease, diagnosed via biopsy. She has NONE of the known markers.

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I should begin by saying that I do believe it is beneficial to have the results of genetic testing. However, it is not true that one cannot develop celiac disease without having at least one of the known (in the US) genetic markers. European doctors recognize a few additional markers and from what I've read, Asian celiacs have different markers as well.

My granddaughter Carly has celiac disease, diagnosed via biopsy. She has NONE of the known markers.

i am not, as some have surmised, opposed to genetic testing. both as a human being AND as a geneticist, i think genetic testing will be extremely important.

however, i AM opposed to HLA testing for the purposes of diagnosing diseases.

HLA haplotypes are directly relevant to a variety of medical issues (tissue typing, being one). but, are of no more value than knowing your blood type, hair color or any of a myriad of other genetic markers. further, they draw attention (and, more importantly, money) away from the task of identifying the gene or sets of genes that directly influence diseases.

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gfb, I still have to disagree. There is a benefit in that according to everything I have read a NEGATIVE TEST showing none of the markers excludes celiac disease. This means to me that the genetic testing DOES indeed have a benefit.

What you consider a benefit lead to my daughter, the only one of us who was diagnosed by both blood and biopsy to stop the diet. She paid for the gene test and was told that since she was not a DQ2 or DQ8 she could not possibly ever have celiac. She now attributes all celiac symptoms to stress. I am definately celiac and was very ill before I was diagnosed. It turns out I have a double dose of a gene that is a recognized celiac gene in the Orient but not here. She is young and I hope she wakes up before some permanent damage is done, oh and I would like to have that doctor that did her gene testing in front of me for just one minute......!

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Thank you everyone for all the great information. I think I will go through the testing as well as find a specialist. My hope is that in finding a solution for myself (and my children) other members of my family who deal with chronic illness will be encouraged to do the same. Thank you again for your insite.

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Ravenwoodglass - How do you know about the marker that you have? I'm getting the results of my genetic test today, but on the phone Dr said it was negative - now I'm wondering about other genes involved.

Jana

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