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My Doctor Has My Results
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8 posts in this topic

But I have to wait for her call to tell me. Will update as soon as I get the info.

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She said that my lab work was normal.

Get copies of all your results. I've many times had things reported as "normal" that were low normal, or even abnormal in the books of other specialists. If they give you a hard time or delay because they "lose" your request, remind them that you are legally entitled to the information. Sometimes threatening legal action is necessary. :angry:

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Definitely get a copy of your labs. You want to verify which tests they did. Often you don't get exactly what you think you did!

And regardless of the lab tests, if gluten-free makes you feel better, then you have your answer. You don't need a dr to agree with that!

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I had scrambled Eggbeaters and a slice of regular toast and I felt awful after eating it. My arms feel like they are on fire.

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I had scrambled Eggbeaters and a slice of regular toast and I felt awful after eating it. My arms feel like they are on fire.

Unless you are going in for more testing for celiac, you can eat gluten free. There is a physiologically separate condition called non celiac gluten sensitivity. People with this disorder have the same negative physical reaction to gluten, but often don't have positive antibodies or biopsies. This is because the molecular pathways that control NCGS activate different aspects of the immune system than celiac disease. Nonetheless, the only treatment is to be strictly gluten free, although the outlook is generally much more positive. Stop eating gluten, unless you are getting biopsies taken! I know whereof I speak, because I was just diagnosed by a celiac expert with NCGS.

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I have an endoscopy scheduled for Thursday morning. I had night sweats like crazy last night. If it is not Celiac, I really hope to find out soon.

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At least that is just a few more days! And you don't have to eat any gluten after Wednesday! :D sounds like you definitely are at least NCGI so regardless of the biopsy, ditch the gluten permanently!

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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