I'm really frustrated right now. I feel absolutely horrible. These are my symptoms: canker sores, numbness in fingers and toes, bloating, gas, constipation, diarrea, joint pain. I had the celiac panel done 2 months ago and it came back negative. Well, I had a colonoscopy and my results were: precancerous polyp and some flattening of the small intestines. My Gastro. doctor asked me if I had ever been tested for Celiac Sprue. I said "Are you kidding me?!". My family doctor is the one that tested me originally and it came back negative". Long story short, I am being tested again for Celiac Sprue. If it is not Celiac, what else could cause the flattening of my small intestines? The doctor is throwing around the term IBS to me. I'm ready to scream!! If anyone has any advice, much would be appreciated. Oh yea, my family doctor told me I have subclinical hypothyroidism, but my GI doctor is saying it is clinical hypothyroidism. The GI doctor said that there is sometimes a difference within Lab companies.:(
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Columbus
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Re: Frustration with being diagnosed!
Sat, February 2, 2008 - 8:47 PMThis is completely in my humble opinion, but it sounds like you should go on a gluten free diet ASAP because no matter what the tests show, it sounds like you are dealing with celiac disease. It often goes with hypothyroidism. You sound just like me. I went on a low does of thyroid hormone and a gluten free diet and in about 6 months, I started to feel normal, no, better than ever! It sounds like you are in good hands with your GI doctor looking into things that your family doctor missed. I hope it all works out for you soon! It takes many people with celiac disease years and years to get an accurate diagnosis. Hopefully that will change as the tests become more accurate. Take care! -
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Re: Frustration with being diagnosed!
Sun, February 3, 2008 - 12:48 PMI got my test results back..........negative! I feel hopeless. I go back to the G.I. doctor Monday. I'm going to ask him why my small intestines are flattened. I'm thinking about going to a alergist next. I feel awful all the time. I'm afraid to go gluten free because if I have another test it will be negative again. I've read somewhere about Non-celiac gluten sensitivity. Does anyone know about this? Thank you Alison for your advice! -
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Re: Frustration with being diagnosed!
Mon, April 21, 2008 - 7:31 PMThis is from the Spring 2008 Montana Celiac Society Newsletter:
Dr. Sheila Idzerda of Medical Associates in Bozeman, MT discussed the gluten challenge diet and the need for definitive diagnosis of Celiac Sprue and Celiac Ataxia during her presentation in August, 2007 at Bozeman Deaconess Hospital. She states that "...the need to return to eating glutens and gliadins after being on a GF diet is upsetting and counter-intuitive, but there are invaluable benefits."
"We need first to assert that it is rare that a gluten challenge is actually necessary in the diagnostic workup of a Celiac patient."
Potential Reasons for Taking the Gluten Challenge:
1. Symptoms reappear in spite of original good response to a GF diet.
2. A diagnosis was made without definitive or clinical diagnosis.
3. Test results are vague or doubtful.
4. There is no digestive improvement.
5. For insurance purposes, armed forces, disability claims, medical personnel, etc.
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I would never advocate tat someone intentionally make themselves more ill, but if a diagnosis is necessary (for any number of reasons) then this could be a way to obtain it.
-K
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