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dhiltonlittle

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dhiltonlittle Contributor

hey, glad i ran across this forum. looks like a great group and some good info!

so i've been really sick for the last 5 months or so. it seems to have happened (kicked in) after having a very bad flu and taking a 5 day antibiotic although it could just be a coincidence.

most of the symptoms are gi related. lots of cramping, stomach noises, nausea (but never throwing up) occasional diarrhea, most stools are very choppy and small in size but large in volume, foul smelling with a lot of undigested food bits on the toilet paper and the tp is also really wet/messy , headache, itchy sides and legs (shins). i've had a colonoscopy with biopsy that came back fine and 2 stool samples that tested negative for blood and cdiff etc. my thyroid tsh level after was found to be in the 80's after my colonoscopy. a few weeks later it was down to 10 with no meds and now is at 7. i also went to a food allergist and tested positive for iga gliadin with a level of 32. now my gi wants me to come in for an endoscopy. i'm not asking for a diagnosis because obviously a doctor is the only one that can do that. but from the sound of it, is celiac a possibility? i'm not too familiar with all of these numbers and letters but know that i don't feel very well at all on a daily basis! thanks for any help and i'm looking forward to reading more on the forum.


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Lisa Mentor

Hi and Welcome!

Yes, certainly many of your symptoms can be related to Celiac. Ask you doctors to give you a full Serologic Celiac Panel.

Here is some information of testing:

Open Original Shared Link

dhiltonlittle Contributor

Hi and Welcome!

Yes, certainly many of your symptoms can be related to Celiac. Ask you doctors to give you a full Serologic Celiac Panel.

Here is some information of testing:

Open Original Shared Link

thanks for the link! i'm going to have the endoscopy done this friday and will see if he can do the blood test while i'm there. what would my level of iga gliadin (32) indicate if it were not celiac? is that abnormally high? what else could it indicate? sorry, i really know nothing about it!

Lisa Mentor

Open Original Shared Link

This is the full blood panel that you should request from your doctor:

1. Anti-gliadin antibodies (AGA) both IgA and IgG

2. Anti-endomysial antibodies (EMA) - IgA

3. Anti-tissue transglutaminase antibodies (tTG) - IgA

4. Total IgA level.

Every lab had it's own ranges and everyone is different. You would have to post your test results, along with the lab ranges.

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    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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