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New Endoscopy

Guest NitaB

By Guest NitaB
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest NitaB
Guest NitaB
Posted

Hi,

I haven't been here for awhile! I guess I'm one of the lucky ones that feel much better on the gluten-free diet. I had conflicting tests back in May and June. The upper endoscopy showed flattened villi, resembling Celiac. But, my blood test came back negative. I was put on the gluten-free diet, and have done a good job of it for over 7 months.

I had my 2nd endoscopy today. The lesions have vastly improved, so the GI Dr. gave me a positive diagnosis of Celiac. And a lifetime gluten-free diet. The biopsies will be back in 3 weeks. They were fine last May, so not too worried about them.

I'm just glad to report that the lesions are healing! I know it's very possible to be getting cross contamination, but not so much as to keep from healing!

I still don't like this diet. But, I'm glad to know my health is in my own hands, and that I can heal! My oldest brother died of colon cancer, and may well have had celiac disease and never known!

Thanks for all the prior help here! This board is great for newbies to learn from others in the same boat!

Nita

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phakephur Apprentice
phakephur
Posted

Hi folks,

Nita's post is troubling to me. A lot of celiac related literature recommends annual blood test to check for compliance to the gluten free diet. If you can have a negative blood test and still have intestinal damage, what is the point of the annual screening? Is Nita's situation so unusual that I shouldn't worry about that?

Nita - I'm glad you're feeling better.

Sarah

cmom Contributor
cmom
Posted

Hadn't heard about the yearly blood tests. My gastro has me come in for blood tests and small bowel with follow through xray every 3 years. If he doesn't see a problem, he says I don't need to come in sooner.

Guest NitaB
Guest NitaB
Posted

Thanks Sarah!

I haven't heard of annual blood tests, either. And the old blood tests weren't as accurate, as I had one over 8 years ago that was negative. That's why I've had to suffer so long with this, as it was diagnosed as IBS.

I have the same GI Dr. as then, but the newest blood test is much more accurate, that's why he was so unsure it really was celiac disease. But, after seeing the improvement in the villi, he gave a definite diagnosis of celiac disease. He had said none of the blood tests are 100%. The test will come back negative without gluten in your system anyway. The upper endoscopy is how they found the lesions in the duodenum last May.

Nita

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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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      My only proof

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    • NanceK
      My only proof

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