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WinterSong

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WinterSong Community Regular

I wanted to say thank you to everyone on this forum. 

 

I've been reflecting a lot on where I was 2 1/2 years ago. I was the first of my friends to be diagnosed (since then, several of my friends/family have gone gluten-free), and during a very difficult and emotional time in my life it was a godsend to know that I wasn't alone. I had friends with funny screen names who would answer my questions, calm my anxiety, or share in my frustration.  

 

I see posts from people who are struggling or are newly diagnosed, and I see people reply who have been on this board consistently for years. The unwavering support that we have as a community is an incredible thing. We are impacting each other's lives in a truly meaningful way.

 

To those on this board who are new and feel like you are alone or aren't understood by your friends/family - it does get better. You are not alone. We are here for you.

 

I am proud to be a Celiac. I am proud to be taking charge of my health. I am proud to be a part of this wonderful, supportive community. We are awesome.  B)


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notme Experienced

me too!  i would have never been able to navigate these strange waters without the help of the many kind people on this forum :)  everybody starts at the beginning!!  i'm glad you are feeling better!  (i am too!)  it truly is a huge resource of interactive experience/advice - hopefully urban myth dispeller - from people who have 'been there, done that, got the t-shirt' lolz ^_^

GF Lover Rising Star

This Forum is also what got me through the gluten-free Transition and listened to me vent when I needed to.  IrishHeart personally got me through dehydration issues and helped me cope with wicked migraines and let me cry on her shoulder.  I have made many friends here and hope to pay forward what I have learned.

 

Colleen

mbrookes Community Regular

I can double up on the previous comments. There is no support group in my area, so I have turned here repeatedly, always with good results.

When I was diagnosed 6 years ago the hospital dietician said " I don't know much about this. Get on the internet". So I did. Six years later I am almost an expert in all things gluten free. Thanks, all you folks who have helped me out. I will continue to help anyone I can.

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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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