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I am new to using a computer to "chat" about stuff. So forgive me if I don't seem to know what I'm doing.

I need some help. I had an endoscopy that showed the "villi were blunted over" so bloodwork was done. The bloodwork was negative to celiac antibodies. I know this sounds strange to wish it was positive, but I'd really like to know what is wrong with me. I've been having medical tests for about 6 years (I'm 50 now). About 2 years ago I was finally diagnosed with a Vitamin D deficiency (osteomalacia) - the symptoms were the same as fibromyalgia - a prior diagnosis. As soon as I started getting sunshine without sunscreen I started feeling better. However, even though I can manage the pain with sunshine, I still have pain in my upper right side and often get stomach upset after I eat. There was never any explanation as to why I had the Vit. D deficiency, and Celiac would certainly explain the problem. My 23 year old daughter actually has more symptoms of Celiac than I do. We have the same doctor. Any suggestions on where to go next or what to do next?

Thanks so much for your advice to come!

MrsLady

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Mrs Lady,

Definition of celiac disease is villous atrophy (or blunted villi) so regardless of your negative bloodwork you do infact have celiac disease.Unfortunately your doctor is terribly uninformed.

Many people here (including my husband) have negative bloodwork - but get a definitive diagnosis of celiac disease through an endoscopy with biopsies.

My advice would be ;

a) Go gluten-free!!!

B) Get a new doctor!!

c) Get your daughter tested

Normally a doctor would do the bloodwork first - (and even if it's negative ALOT of people gain relief from going gluten-free)

..then a biospy - but not everyone chooses to do this. A large proprtion of members here didn't bother and just go gluten-free - and then discover they feel much better!!

The chances are (as celiac disease is a genetic disease) are that your daughter has it too if she has many symptoms.


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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I would strongly encourage you to get a copy of the bloodwork that your doctor did. The tests than ran may have been next to worthless if they didn't run the complete set. And, as was pointed out, the 'scopy findings are pretty much the classic definition of celiac, and not many other things cause them. I would also strongly encourage you to tried the gluten free diet - strictly - for at least a month, to test whether or not it helps you.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I would strongly encourage you to get a copy of the bloodwork that your doctor did. The tests than ran may have been next to worthless if they didn't run the complete set. And, as was pointed out, the 'scopy findings are pretty much the classic definition of celiac, and not many other things cause them. I would also strongly encourage you to tried the gluten free diet - strictly - for at least a month, to test whether or not it helps you.

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Dear Nikki and Tiffany,

I thank you so much for your replies. I will show my daughter and I will talk to my internist rather than the gastroenterologist. I guess I'm about to emabark on a major lifestyle change. I am an inventive cook and used to cooking with whole foods, so I think it will be okay. I'll be glad to be getting better. Thanks again. Mrs Lady

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