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I Am Confused....

Justsoconfused

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Justsoconfused Newbie
Justsoconfused
Posted

Hi,

In the last two years I have been diagnosed with Hashimotos and B12 deficiancy... started b12 shots (every two weeks) and thyroid meds. In the last 6 months or so things for me went back down hill. Wieght gain horrible fatigue horrible peripheral neuropathy If I ate even a small meal it felt like I had swallowed a watermellon for days. Forget a normal bathroom rotuine. Horrible headaches some for a week at a time HUGE hair loss and what I thought was razor rash ALWAYS on my legs from ankle to hip. ETC...

I had blood tests about 6 months ago for crohns and celiac they were negative (although my crohns titer was up in the positive range). I also had a "negative" endo and colonoscopy. I say "negative" because it said I had long term small intestinal swelling....

Because of these results I was diagnosed with IBS and put on dicyclomine.... (it quit working)

The PA I was seeing recently left the office I visit and I had to reestablish myself....

Almost immediatly she asked if I have ever heard of celiac or gluten free....

another blood test for celiac ordered....,

I have been (I am trying really hard crosscontamination is a pain!) gluten free for about 5 days

The new test is back negative

however I feel SO much better after only 5 days can this all be psychosomatic?

 

I hope I wasnt too confusing I just didnt want to go over the last 5 years of doctors visits.... questions and answers welcome.

Thanks

Justsoconfused

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GFinDC Veteran
GFinDC
Posted

Hi Justso,

 

Welcome to the forum! :)

 

Not having celiac disease doesn't mean you don't have a problem with gluten.  NCGI can cause similar symptoms, and won't show up on celiac disease tests.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html
 

 

nvsmom Community Regular
nvsmom
Posted

Paul is right, Non-celiac gluten intolerance is much more common than celiac disease and it has basically the same symptoms as celiac, just minus the villi destruction. It could be NCGI, i have seen stats that state it is resent in 6-30% of the population (I've seen 6% sited the most). Because you have Hashimoto's and low B12 , I would say there is a chance you have celiac disease that is not serologic ally positive or seen in biopsy, but it is a slim chance.

Either way, treatment is a gluten-free diet. Best wishes. I hope you continue to feel better.

Lisa Mentor
Lisa
Posted

I concur with the above peeps. :)  Good advise.

SasaMinks Rookie
SasaMinks
Posted

I am in exactly the same boat! negative tests but anemic and with all the celiac symptoms - gluten-free for 6 days and I feel like a different person already - I don't know what to think either!

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      I don't see how cornstarch could alter the test results. Where did you read that?
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    • Julie 911
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      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
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      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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