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New Endoscopy
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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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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

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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.

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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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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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