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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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    • First, do you have celiac disease?  I assume you do.  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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