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Question About Results
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My genetic testing came back positive for carrying the genes. My blood work was negative. My biopsy showed damaged. He said it's possible for people to walk around with the genes and not have celiacs. He told me to try the gluten free diet to confirm and I been doing it since October 2011. I'm not getting this... Anyone else have results like mine?

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My genetic testing came back positive for carrying the genes. My blood work was negative. My biopsy showed damaged. He said it's possible for people to walk around with the genes and not have celiacs. He told me to try the gluten free diet to confirm and I been doing it since October 2011. I'm not getting this... Anyone else have results like mine?

Yes. My blood work was either negative or non-conclusive. (It was almost seven years ago so I don't remember.) The gastroenterologist bet me $50 that I didn't have celiac disease but my internal medicine doctor was sure I did. I had already had a colonoscopy that didn't show any major problems a year before. My doctor insisted that the next colonoscopy have biopsies EVERYWHERE. I only had damage in one small area close to my ileocecal valve, but I was diagnosed with having celiac disease and went on the gluten free diet. I got better almost immediately. My problems with fibromyalgia improved immensely and my stomach problems stopped. Now I only have problems when I accidentally get gluten.

Note of caution...there is gluten in LOTS of things - salad dressings, salsa, soy sauce, spices, soup, shampoo, makeup.

There is a lot of information available about what foods are safe. Good luck.

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My genetic testing came back positive for carrying the genes. My blood work was negative. My biopsy showed damaged. He said it's possible for people to walk around with the genes and not have celiacs. He told me to try the gluten free diet to confirm and I been doing it since October 2011. I'm not getting this... Anyone else have results like mine?

You aren't seeing any improvement yet?

Sounds like you have celiac, he just wants you to eat gluten free to confirm.

I went gluten free in November. I have had to stop eating eggs, and now lactose to feel better.

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I see an improvement on and off. But my nutritionist said she thinks because i have such a bad anxiety disorder and stressful life that my stomach isn't healing as fast as it could be. I can't tolerate corn, eggs, or alcohol

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    • What?  Wine that contains  milk?  That is new to me.   You know that there are about 300 symptoms for celiac disease and you do not have to have intestinal issues.  You do not even have to have ANY symptoms (aka silent celiac).  I think you need to wait for your endoscopy.  When is it scheduled?  I assume it is not for months and that you will be expected to consume gluten daily for 2 to 4 weeks (called a gluten challenge) prior to the endoscopy.  Because you have to be on a gluten-containing diet to get results (see University of Chicago's celiac website).   Celiacs can have many intolerances that can resolve once the body heals.   I would be worried about getting a proper diagnosis.  Did your doctor advise you to go gluten free prior to the completion of all testing?  
    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
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