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Negative Celiac Panel


sxxymarineswife

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sxxymarineswife Newbie

I apologize if someone has already asked this, but I had so many of the symptoms of celiac's, so my doctor did a "celiac panel" that came back negative. I've heard that it can come back negative but still have it. If the celiac panel comes back negative, what steps do they take to determine if you really have it? I have considered following a celiac-like diet, but I have heard you shouldn't do that if you haven't been diagnosed.

Any words of wisdom would be greatly appreciated!


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ravenwoodglass Mentor

You could go with Enterolab. They test for antibodies in the stool and while they don't diagnose celiac if you are producing antibodies you do need to stop the gluten. They can test for up to a year after you have gone gluten free. You also have the choice of trying the diet strictly for a few months. With the high level of false negatives in testing for some of us the dietary response is our only choice. In addition some doctors are aware of the high rate of false negatives on blood screening and will give an official diagnosis based on the resolution of symptoms on the diet. There are also some of us who don't want an 'official' diagnosis because of it's potential impact as a 'preexisting condition' with insurance companies. In the end your body knows the answer.

momof4inla Newbie

I apologize if someone has already asked this, but I had so many of the symptoms of celiac's, so my doctor did a "celiac panel" that came back negative. I've heard that it can come back negative but still have it. If the celiac panel comes back negative, what steps do they take to determine if you really have it? I have considered following a celiac-like diet, but I have heard you shouldn't do that if you haven't been diagnosed.

Any words of wisdom would be greatly appreciated!

I also just had my bloodwork results come back negative. I was shocked. My doctor also performed a colonoscopy and endoscopy though... we are still waiting on the results. But since my husband says my doctor told him he only took one biopsy - my next step is to use Enterolab. Find out if it's gluten once and for all.

Good luck.

GFinDC Veteran

The endoscopy is often the next step, but it can have false negatives also. Enterolab is probably a lot less expensive and can test you for some other food issues also. In Canada they have a test called Bio-card that is a home blood test. It seems like all the tests are reliable when indicating a positive, but not so reliable when indicating a negative result. So a good 2 or more month test fo the diet is a good idea regardless of negative tests.

Wapondi Newbie

I wish I'd heard of Enterolab - maybe I wouldn't have had to go through all the testing I did. My bloodwork was negative too but then they found evidence of celiac during my endoscopy. Good luck!

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      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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