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Beware B Vitamin Toxicity!

SGRhapsodos

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

It still makes me mad that I suffered with really bad gallbladder pain/nausea before I was DXed Celiac. I got an ultrasound which showed no stones, and from then on my comlaints fell on deaf ears. My Dr. actually yelled at me "there's absolutely nothing wrong with your gallbladder!"

It's shocking to me how many Dr.s don't think to order the HIDA scan! When I got my test results back I wanted to go back to that stupid Dr. and smack him over the head with the results. :angry:

I'm glad you knew what test to ask for. We can't just rely on the Dr.s to have all of the answers. It's good that we share here. :D

  • 4 weeks later...
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GladGirl Rookie
GladGirl
Posted

Although this thread is a little old, I was glad it was here! I just came back from my new Dr's office and found out that I have over-supplemented Vitamin B12. I have some "toxic" side-effects, mainly "joint pain" popping up in my extremities. The Dr. and I both think because excess Vit B12 can be stored in the liver, and my major issue with Celiac has been my liver enzymes, this may be causing the problem. At any rate my liver enzymes are almost normal now!! They were well over 100 and now to 40 on AST and 42 on ALT. Whew!

So, on this information provided, please do make sure as you supplement that the Dr. is testing appropriately and you let them know any possible side-effects you are experiencing. (I thought somehow, I had been glutened, thankfully not the case)

As my body is still continuing to heal, my glucose is good, my cholesterol keeps jumping around...lol! This time my LDL was lower, my HDL higher, but also my triglycerides were higher...ugh.. In the meantime, I sure have been sleeping better and no pain in my right side anymore!! (last night I slept for 7 hours straight!) It has been over 12 years since that has happened.

Oh, and the many recipes here are so helpful, I even have my neighbor, who loves to cook making some of the special treats for me!! :)

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      Thank you, that is helpful!
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      Dried Chickpeas

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    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      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
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      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
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      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
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      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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