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Confused! Please Help

JennyRey

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JennyRey Rookie
JennyRey
Posted

So.. I just got a call from my doctor about my blood work and the Celiac test came out negative. I was so sure this was what I had from my symptoms. My B12 Levels were low and she has started me on a course of B-12 injections to begin tomorrow. I am still scheduled for an endoscopy on Feb 26 and a colonoscopy (which I plan on cancelling).

Im confused. I had all the symptoms for Celiac AND while on this diet my stomach has been better.. I have still had pains but I figured it was because my small intestines were healing..

What else could be wrong with me??

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YoloGx Rookie
YoloGx
Posted

So.. I just got a call from my doctor about my blood work and the Celiac test came out negative. I was so sure this was what I had from my symptoms. My B12 Levels were low and she has started me on a course of B-12 injections to begin tomorrow. I am still scheduled for an endoscopy on Feb 26 and a colonoscopy (which I plan on cancelling).

Im confused. I had all the symptoms for Celiac AND while on this diet my stomach has been better.. I have still had pains but I figured it was because my small intestines were healing..

What else could be wrong with me??

I agree, it can be very confusing. Especially if you want a definitive diagnosis. Not everyone gets it. By your being off the gluten for a while, the docs tests might not be able to find out if you have celiac or not.

Secondly, a lot of times the doctors fail to find the right site for the damaged villi. After all, its not always so easy to find.

Thirdly, a lot of people have what is called severe gluten sensitivity. Often times their symptoms are the same or nearly the same as those who have celiac. If you are lucky you won't be affected by cross contamination by very small, infinitesimal amounts of gluten. However that isn't always the case. You go figure...

There is much science has yet to explore and determine. Meanwhile listen to your body and do what you need to do to take care of it, whatever that might be.

Bea

lynnelise Apprentice
lynnelise
Posted

Unless you absolutely need a diagnoses to stay with the diet then I wouldn't worry about it. My bloodwork was also negative (though I later realized I had been on the South Beach diet so I may not have had enough gluten in my diet) and I tried gluten free anyhow. The results have been wonderful and I would not consider going back to eating gluten just to get a diagnoses. I've seen several doctors and they all agree that if I'm sick when I eat it and feel good when I don't then my body is telling me not to eat gluten!

JennyRey Rookie
JennyRey
Posted
  • Author

I started the Gluten diet 2 days before I went for the blood work. I was just so sure that it was gonna show up positive.

GFinTN Newbie
GFinTN
Posted

I started the Gluten diet 2 days before I went for the blood work. I was just so sure that it was gonna show up positive.

2 days usually isn't long enough. All the info I've read, states you need to have gluten in your diet for 3-6 months for the most accurate test results.

nora-n Rookie
nora-n
Posted

It is known that about 20% of biopsy proven celiacs have negative blood work.

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