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smw

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About smw

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  1. Hi I had the entire Celiac workup 2 years ago. I had pitting edema on my legs, arms, hands, and sometimes my face. I could push and leave a dent I could pour water in and would stay until I rubbed it out. I was anemic and had been for quite some time. I had suggestive bloodwork, but not what they called definitely postivie. I had thyroid issues, insulin resistance, and some other things associated with celiac disease. My biopsy was negative. The GI doctor said it was not celiac disease since I had a negative biopsy. I then went to see a celiac specialist who is nationally known and she felt strongly I had celiac disease and put me on a gluten free diet. It all went away. It has been 2 years and the doctor had said after 6 months I could eat gluten for one day and see what happened, but I never did. Today I decided to try it. I am swollen to the point where it hurts to move my joints and I feel the swelling in my face when I blink my eyes. It is definitely the gluten. No more for me....ever! The funny things is....the foods I haven't been able to eat for 2 years did not taste as good as I remembered.
  2. Thanks for the info. They have checked for protien in my urine and run a lot of labs on kidney, heart, and liver. This has been going on for quite some time and they don't know what it is. That is when I asked to be tested for Celiac. My family doc did the basic screening and I went ahead and went to a GI doctor on my own. I also see an endocrinologist who can't figure it out.
  3. I live in Atlanta Georgia and there is a doctor in Atlanta that speaks at different Celiac events and seems to be well respected for Celiac. She doesn't take insurance so it is expensive, but I think I will go see her and see what she says about all of my results and see if she still recommends a colonoscopy even if I do the celiac diet. Thanks for all of your input!!! Do you know if since my son tested positive for the gene if I have to have it too?
  4. No my doctor doesn't want to do the gene test on me since she is "100% sure" I don't have it. Now she wants to do a colonoscopy and another study where I drink stuff and they xray me for 4 hours and watch it come through me. I don't think a colonoscopy is needed.
  5. My son and I are being tested for celiac. He has the gene...don't know if I do. My biopsy came back negative. We have a family history. I have many of the GI symptoms and other symptoms. I also am anemic, low B-12 and have bad pitting edema on my legs, and several autoimune problems associated with celiac. I was sure I had it. The bloodwork and biopsy were negative. The biopsy (2 samples) were taken in the lower small intestine (the one that starts with a j). My doctor says it is 100% accurate and I don't have celiac. Does anyone know if this is true? PLEASE let me know if you have any info. Thanks!!!
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