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False Positive?
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My daughter has been diagnosed with Lactose Intolerance and Irritable Bowel Syndrom. These are both symptoms of Celiac. She had the blood test and it came back as a false positive. This means the IGG were irregular but the IGA and IGE were negative. Does anyone know exactly what this means. The doctor said it means she does not have celiac. Could he be wrong? Any information you can give me would be helpful.

Thank you

Robin

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well, I guess you could call it inconclusive, but until you can otherwise verify that she's not celiac, you can't call it a false positive. celiac is NOT an IgE mediated response (from my understanding it can also cause an IgE response due to inflammation, but that's not the primary mechanism) (that's a "classic" allergy), and if he didn't do a total IgA count, a low IgA reading doesn't really tell you anything. The fact that the IgG was elevated suggests that she _could_ be positive. Based on a single raised IgG, my doc had me do a dietary test (which turned out positive).

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Hi Robin- Welcome :)

In my opinion blood test are not conclusive or accurate. I suffered for over a year with the classic Celiac symptoms including losing 40lbs in 2 months and my doc still thought I had IBS. I had an endoscopy, which showed patchy inflammation and he STILL thought it was IBS because my blood-work came back negative! The docs think they have to see everything in black and white and when they don't they quickly dismiss celiac disease. Of course there are other docs who think celiac disease is so rare and they his/her patient couldn't possibly have it!!!

I finally decided to order the stool panel tests from Enterolab and received positive results and immediately began a gluten-free diet! This particular stool test is more sensitive than blood and you do not have to be on gluten for it to be accurate. I could tell a difference in the way I felt within days and very thankful that I took this route and do not have to live in pain on a daily basis!

Good luck to you and your daughter, I hope she feels better soon! :D

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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/  
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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