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Could It Be Something Else?

#1mommy

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#1mommy Newbie
#1mommy
Posted

I have been gluten free for 6 months now with no results and actually my BM's have gotten worse like undigested food. I still have stomach pain all the time. Something strang happened the other day I ate a meal and felt great. I was the first time in months that I was not running to the bathroom after eating. To my supprise I read the lable and wheat was one of the top ingredants.This was probable one of the only times I did not read first. I was told by a woman that has celiacs that I could have a corn alergy instead. I was diagnosed by blood test and biopsy. The lab that did the blood test had to look it up to see what the needed and said they had not ran that test before. Could they have done the test wrong? I don't understand why there was so much difference.

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CarlaB Enthusiast
CarlaB
Posted

If you were diagnosed with a positive biopsy, you have it!!! Sometimes celiacs have a delayed reaction to glutening and sometimes they become more hypersensitive with a small amount. It's like when you're getting a lot of gluten, your body can't do anything about it, but when you get a small amount, the body wants to eliminate it immediately!

My first guess is that you're getting hidden gluten from somewhere.

My second guess is that you need to cut out dairy until you're healed.

Flor Apprentice
Flor
Posted

Are you eating soy?

ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the other great advice have you eliminated non food sources of gluten? Things like shampoos and toiletries, gluten in hobby or craft items like paints, clays and glues, remodeling stuff like drywall and compound or wallpaper paste? Sometimes as we heal we become more sensitive to hidden gluten aroung us. I kept making myself sick with a shared can opener and pet food, took me over 2 years to figure that out. I hope you get some relief soon but as another poster said with both bloodwork and biopsy positive there is no doubt you are not handling gluten. You also may want to have the blood tests run again, since you did show positive they will be a good indicator of how gluten free you have been.

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      By knitty kitty · Posted

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
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      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?
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      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
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      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
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      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.
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