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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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floridanative

What Is The Name Of The New Celiac Blood Test?

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I knew there was a new very reliable blood test coming out for Celiac testing and that it should eventually replace the gold standard of the biopsy for dx. But some doc in FL used it recently to dx his daughters friend from school. My sister found out but forgot to ask the doc the name of the test and I really want my Mother to have the new test if possible. Does anyone know the name of the new blood test? It's something like 80% more reliable than the standard Celiac panel that has been used to date.

Thanks in advance if you can help!

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I dont know of any new blood test.

The tTG is suppossed to take place of the biopsy as "gold standard" at some point but I never heard of a newer test than that.

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Yeah there is a new test for sure. But I was under the impression that it would be available in the US a little later this year. But since the ped. doc in FL already used it two weeks ago and told my sister all about it and that it blows the old test away regarding accuracy (which is what I'd heard too from the Celiac expert I saw speak in early Feb.). I think this new test was developed in Italy as we know how far ahead of the US they are on Celiac testing. Anyway, someone on another board said it may be called the RDW blood test but I don't have any idea if that is right or not.

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Cool...I'm glad they're getting some more reliable tests. :)

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HI Floridanative.

I don't know what the name of the test is either, but my brother (who was diagnosed a few years ago) told me about it earlier this week when we spoke ( he didn't remember the name?) He said it had been out for about six months. He also lives in Florida.

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That is soooooooo odd. Okay in Dr. Green's new book he says the new test is a rapid finger prick test and that it will be available soon. Obviously he did not write the book two weeks ago so I'm sure it's the same test but I don't know if we should be telling family members who are willing to be tested to just ask for the ripid finger prick Celiac test or if there is an actual name for it...I'm sure there is but I want to find out what it is.

I have a contact that works for Dr. Green....I'll see if she can help!

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I have an appointment next week with a gastro, so I will ask him as well? Or if you find a name by then please post it - sure would like a finger prick more than having blood drawn!

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I bought stock in Stratogene. They recently got FDA approval of their test for Celiac. I don't know of any catchy name for the test yet. There was also another company working on a Celiac test and there is the York rapid stick test.

Laura

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A skin prick test is still a BLOOD test, undoubtedly with all the accompanying lack of precision. A skin prick is just easier than drawing blood, I suppose. A blood test by any other name.....

The recurrent theme here is that a person will often have all these digestive symptoms that no one can figure out....all the doctors know to do is order the usual, inefficient blood test which will of course often be negative....patients are told they "don't have celiac"…and on and on they go continuing to have problems. Doctors seem entirely unaware that blood tests do NOT tell the whole story in many if not most cases, particuarly where there are ongoing digestive symptoms. They just rule out celiac immediately without even knowing that a celiac diagnosis is still entirely possible or even probable.

I'm reading a book right now I just got from Amazon which is just a whole collection of stories from people telling how they finally got diagnosed.....most stories included negative blood tests, even some supposedly negative biopsies, mis-diagnoses, and long periods of time...often years, before it was finally figured out, usually by the patient taking his/her own initiative in delving further into this. One predominant message was the need to seek their own solutions rather than rely on uninformed doctors who never figured it out. Good reading and lots of good lessons for how to deal with this problem of diagnosis.

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I'm reading a book right now I just got from Amazon which is just a whole collection of stories from people telling how they finally got diagnosed.....most stories included negative blood tests, even some supposedly negative biopsies, mis-diagnoses, and long periods of time...often years, before it was finally figured out, usually by the patient taking his/her own initiative in delving further into this. One predominant message was the need to seek their own solutions rather than rely on uninformed doctors who never figured it out. Good reading and lots of good lessons for how to deal with this problem of diagnosis.

Could you please tell us the name of the book?

To reply to the first post, as far as blood testing goes I trust blood tests like I trust doctors, as far as I could throw one. My DS is gluten intolerant and searching real hard for a doctor that will tell her her positive biopsy and blood test were wrong. Unfortunately she is having a great deal of success, due to the unreliable and often inaccurate results of blood testing she has now been off her diet for 2 years. I live in fear that the paranoid, depressed, delusional and self-destructive reactions to gluten that she had for YEARS will take over her life again. And not a thing I can do about it. Unfortunately it may be years before anything other than GERD shows it's head and by then the damage to her life may be severe. I know I was predominately a neuro and skin symptom person for over 30 years. Trust your body not the tests, it knows you best.

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Well Dr. Peter Green's assistant got back to me and her e-mailed stated she was quoting the Dr. directly. He says the newest test he knows of is a new anti gliadin antibody test. It is supposed to be way more reliable than the old test. He feels sure it is not avialable at this time. He did not give a name or say who makes it.

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Could you please tell us the name of the book?

To reply to the first post, as far as blood testing goes I trust blood tests like I trust doctors, as far as I could throw one. My DS is gluten intolerant and searching real hard for a doctor that will tell her her positive biopsy and blood test were wrong. Unfortunately she is having a great deal of success, due to the unreliable and often inaccurate results of blood testing she has now been off her diet for 2 years. I live in fear that the paranoid, depressed, delusional and self-destructive reactions to gluten that she had for YEARS will take over her life again. And not a thing I can do about it. Unfortunately it may be years before anything other than GERD shows it's head and by then the damage to her life may be severe. I know I was predominately a neuro and skin symptom person for over 30 years. Trust your body not the tests, it knows you best.

The title of the book is "A Personal Touch on...Celiac Disease--the #1 Misdiagnosed Intestinal Disorder." by Peter Berlin and Jerry Stone. There are several discussions in the book mentioning depression as a side effect of untreated celiac. Here's the amazon link:

http://www.amazon .com/gp/product/097485660...5Fencoding=UTF8

I'd suggest getting the Enterolab stool testing panel, or at the very least, their gene test. Much much better than any blood test in my opinion. This test catches the cases the blood tests miss. If you at least get the gene test, you know exactly where you stand in terms of predisposition, and if you have the genes, Dr. Fine recommends eliminating gluten from your diet right then and there. Having a predisposition by having the genes doesn't mean you have celiac disease actively occurring, and it might never happen, but then again, doctors don't really know for sure. With the predisposition your chances are good that it could be triggered at some point, and it could be "silent" in terms of noticeable symptoms, yet intestinal damage is being done. And you have to consider the greatly increased odds of getting certain cancers and other autoimmune diseases. As I have read many places, even if you think nothing is happening you are better off eliminating gluten BEFORE something happens. It is apparently easier to prevent autoimmune diseases, for example, than it is to get rid of them once they kick in. Same with cancer, obviously. Prevention is the key, and the gene test is the key as far as I'm concerned.

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There is a line of thinking that before too much more time goes by that Dr. Fine's (from Enterolab) testing method---through the stool will become the gold standard. It is much more sensitive than testing through the blood and more reliable. People that cannot get a good reading through blood are getting them from him and, in the end, spending less to do it, if they didn't spend a lot with the doctors first. The only drawback now is that most insurances aren't recognizing him yet. Also when you use Dr. Fine's labratory, you can be gene tested which is very revealing. Barbara

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I'd suggest getting the Enterolab stool testing panel, or at the very least, their gene test. Much much better than any blood test in my opinion. This test catches the cases the blood tests miss. If you at least get the gene test, you know exactly where you stand in terms of predisposition, and if you have the genes, Dr. Fine recommends eliminating gluten from your diet right then and there. Having a predisposition by having the genes doesn't mean you have celiac disease actively occurring, and it might never happen, but then again, doctors don't really know for sure. With the predisposition your chances are good that it could be triggered at some point, and it could be "silent" in terms of noticeable symptoms, yet intestinal damage is being done. And you have to consider the greatly increased odds of getting certain cancers and other autoimmune diseases. As I have read many places, even if you think nothing is happening you are better off eliminating gluten BEFORE something happens. It is apparently easier to prevent autoimmune diseases, for example, than it is to get rid of them once they kick in. Same with cancer, obviously. Prevention is the key, and the gene test is the key as far as I'm concerned.

Thanks I am going to see about getting the book. I agree about the Enterolab tests They really seem to be the way to go right now. Hopefully when the new tests come out they will use it on everyone, not just those with obvious symptoms.

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CMCM is right about that book...it is wonderful. eeyor fan posted about it in Nov. on this site. It even has an idea for french gluten-free dining cards to use in france....I didn't notice until after I order the Triumph dining cards, they don't have a french one in the set. Most of all it just shows how different we all are and what we have in common too....in a really lovely way.

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Well since I started this thread I thought you'd all get a kick out of what I found out. My sister's ped doc apparently thought the old Celiac panel blood test was the latest and greatest test around. Whaaaaaaaa???!! :o As Dr. Green stated, the new blood test is not available yet but should replace the biopsy once it's released. For some reason, they don't think this new test will miss any Celiacs. Obviously time will tell. Anyway, sorry to spread inuendo by some quack who knows less than most about Celiac and testing for it. No wonder no one knew what I was talking about.

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:lol::lol::lol: I was all excited to think there was a new test!

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That's OK. At least there's something on the horizon.

I wonder if this new test will be ale to test a celiac who is gluten-free and tell the Dr. that yes, this person is Celiac? or would you have to eat gluten in order to get an accurate result?...

I am wondering when they'll test some type of gene therapy to act against gluten reactions....

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hi, i am new to this gluten-free thing. i was told i have celiac 3/6/06. my 1st test was a gi panel were i sent stool through the mail. is that entrolab? i insisted on bloodwork but is it nessesary? i have been gluten-free for 24 hrs. it's not so bad yet, but i still feel like stool ;) how long till i feel better??

The title of the book is "A Personal Touch on...Celiac Disease--the #1 Misdiagnosed Intestinal Disorder." by Peter Berlin and Jerry Stone. There are several discussions in the book mentioning depression as a side effect of untreated celiac. Here's the amazon link:

http://www.amazon .com/gp/product/097485660...5Fencoding=UTF8

I'd suggest getting the Enterolab stool testing panel, or at the very least, their gene test. Much much better than any blood test in my opinion. This test catches the cases the blood tests miss. If you at least get the gene test, you know exactly where you stand in terms of predisposition, and if you have the genes, Dr. Fine recommends eliminating gluten from your diet right then and there. Having a predisposition by having the genes doesn't mean you have celiac disease actively occurring, and it might never happen, but then again, doctors don't really know for sure. With the predisposition your chances are good that it could be triggered at some point, and it could be "silent" in terms of noticeable symptoms, yet intestinal damage is being done. And you have to consider the greatly increased odds of getting certain cancers and other autoimmune diseases. As I have read many places, even if you think nothing is happening you are better off eliminating gluten BEFORE something happens. It is apparently easier to prevent autoimmune diseases, for example, than it is to get rid of them once they kick in. Same with cancer, obviously. Prevention is the key, and the gene test is the key as far as I'm concerned.

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