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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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    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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