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Is this all in MY head??

curiousgirl

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curiousgirl Contributor
curiousgirl
Posted

I was diagnosed with celiac last Wednesday, 5/26. I've been doing the best I can on my own to eliminate gluten from my diet...haven't begun to take a look at my cosmetics and body care products. I have an appointment this Thursday with a new gastro doc...but until then.....

These are my test results:

tTG Ab,IgA

>100

Unit: U/mL

Reference Range:

NEGATIVE: <5

EQUIVOCAL: 5-8

POSITIVE: >8

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WheatChef Apprentice
WheatChef
Posted

Holy cow, unless I'm reading that terribly incorrectly your results are greater than 100 AU!

That couldn't be further from being "all in your head" it sounds more like it's all over your body! The cleansing process can be very confusing and it takes most people multiple tries to finally get totally gluten free at home.

In the meantime, my special drink for gastric issues concerns lots of bacteria. I personally prefer coconut kefir (some of the most delicious stuff in the world) but you could just take some probiotics (or mix the two!). Probiotics have been shown to aid in the recovery of celiac disease, while damaging your intestines with gluten you end up severely disturbing the natural colonies of bacteria that keep your guts running properly.

ravenwoodglass Mentor
ravenwoodglass
Posted

It is not all in your head. It takes a while to recover from the damage, it didn't occur overnight and won't go away instantly either.

Be sure you check all meds and supplements you take, eat a whole food unprocessed diet and learn about CC issues. There is a bit of learning to this gluten free thing but you will get it. Your in a great place to learn what you need to do, like having a seperate toaster for your gluten free items, replacing scratched and wooden cooking utensils, not baking with gluten flours for others etc.

PrincessHungry Newbie
PrincessHungry
Posted

When I went gluten free, I experienced the most painful heart burn ever. For a week or two I ate rolaids and tums like they were candy. I had never experienced real heart burn before that. It was super intense but eventually went away. I think the severe diet change caused my body to freak out a bit.

I understand the "Is it all in my head" problem. Trust yourself. You know what's going on even if it seems crazy.

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    • knitty kitty
      Dried Chickpeas

      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. 
    • 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.
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