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New Endoscopy


Guest NitaB

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Guest NitaB

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

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

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

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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
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    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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