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    Do you have questions about celiac disease or the gluten-free diet?

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I am in Pittsburgh and have been to multiple doctors for stomach issues. I had an endoscopy that showed "villous atrophy indicative of celiac sprue". I had IgG and IgA testing- both came back negative. I had genetic testing and the doctor says it is also negative, but the results say I am positive for:

DQB1*03

DQB1*06

DQA1*01

DQA1*03

I have googled and googled with no luck. I guess I have a few questions. Can everything be negative and I still have Celiac disease? Or what else could cause the damage to my intestines? Does anyone know enough about genetics to interpret these positives? I know I shouldn't be seeking medical advice on a forum, but my doctors have been useless. Any advice is appreciated. Should I keep up the hunt for a doctor or is this a true negative?

 

Thanks!
 

 

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I can't answer about the HLA tests but since you did have villi destruction have you tried the diet strictly for a while? Some folks don't show up positive on blood tests and there are some more rare genes that are also associated with celiac. I can't say for certain that one of the ones you are positive for is one of them or not so I will leave that to someone more familiar with that subject.

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I have been gluten-free since June and do feel better. The doctor just keeps saying I need to stop and eat more fiber since my tests are negative. My joints don't hurt anymore so I am very hesitant to go back to that pain. I think I will just have to try another doctor. This is a very frustrating process. Thanks for the response!

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Here is my opinion (lame that it may be).  Years ago, doctors thought celiac disease occurred only in children (signs of malnourishment/extended bellies) and that you had to be of European decent.  Even when Dr. Fasano came to the US, there were very few people who being diagnosed with celiac disease.  He and other researchers discovered that celiacs can be large or small, old or young, European decent or not, and that the disease was systemic with over 200 possible symptoms or none at all.  What I like about him is that each time he lectures, he points out that the we still do not know everything about the gut.  

Are your genes affliated with celiac disease?  I do not know and I honestly do not research it because I am already diagnosed.  Not to mention that gene knowledge is limited.   Maybe you are like me and you test weird.  I only test positive on the DGP IgA.  Maybe you are seronegative and that happens and the percentage is not tiny.  Does your GI even keep up with the latest celiac research?  

Okay, I am ranting, but if the diet is helping and you had villi damage and you were not in the subtropics, gulped down massive amounts of ibuprofen, have a severe milk or food protein intolerance (usually occurs in babies), chances are you have celiac disease.  The pathologist thinks so!  

I would err on the side of staying healthy.  I am diagnosed (five years), but my hubby is not.  He went gluten free 17 years ago per the poor advice of his GP and my allergist.  It worked though.  He got well.  Will he do a challenge?  No way.  I do not blame him.  Does he have celiac disease?  Who else would stay on a gluten free diet if they did not think it was working?  

It might help you to get another opinion.  Keep and maintain all your medical records.  It is your right.  But the bottom line is your opinion.  You know that your joint pain is gone and more fiber is not going to cure that!  

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    TDZ, I am not a doctor nor any sort of expert here, but my experiences have largely mirrored those of your husband, expect that I am 12 months ahead of him on the gluten-free diet (and now recently on the Fasano Gluten Contamination Elimination Diet --- you can look it up here).  But one thing that I have repeatedly read is that neither the blood test nor the skin biopsy are conclusive for a diagnosis of DH, with a relatively high "false negative" rate, of maybe 20% to 40%. In my case, I co
    TDZ, I am so sorry to hear about what your husband is going through. I have also experienced unusual chills more or less at the same time as DH outbreaks.  Not severe chills with the violent shivering, as one can get from a repeat bout of malaria, but just not being able to get warm, even when the house is at its same normal temperature --- sometimes I would check the thermostat, almost certain that the heat had failed for some reason, then walking around the house with an extra sweater, or
I was just reading some of the biopsy threads, and I wonder -- he has lesions, all over, and has had for a couple of years to varying degrees, so even if the celiac blood test was negative due to his recent gluten-free diet, would they still be able to find it in the biopsy? Because there are lesions to biopsy next to -- those haven't stopped. Maybe he wouldn't have to go back to gluten to get the biopsy?
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