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Looking For Advice On Pursuing A Celiac Diagnosis

LSP2012

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LSP2012 Newbie
LSP2012
Posted

Hello,

I'm new here and very new to this lifestyle. My insurance doesn

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Cara in Boston Enthusiast
Cara in Boston
Posted

More celiacs are overweight at the time of diagnosis. Being underweight due to malabsorption IS a symptom of celiac, but not the most common.

If you don't need a formal diagnosis (for school, insurance, etc.) don't bother making yourself sick in order to be tested. Don't bother spending additional money to find out an answer you already know.

However, I would assume you have it (given your symptoms and response to the diet) and act accordingly - never cheat, encourage all first degree relatives to be tested, be aware of the symptoms of other, related autoimmune disorders, etc.

What would you do differently if the doctor told you you did indeed have celiac?

Cara

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mushroom Proficient
mushroom
Posted

I agree with Cara. The diagnosis at this point would serve little purpose except to wave in the face of the ignorant doctor. You would have to eat gluten for 2-3 months to make the testing valid and cause yourself additional distress and damage in the process. Just assume you have it (even if it is non-celiac gluten intolerance the treatment is the same) and get your family tested and keep watch on your kiddos for development of any symptoms (you know what to look for now).

It is perfectly normal, once you have been gluten free, for your reaction to gluten to be stronger than it was previously. Your body is no longer worn down with all that gluten and is able to mount a more vigorous attack with fresh antibodies :)

Eat gluten free and be well.

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nvsmom Community Regular
nvsmom
Posted

Hello,

I went into this assuming I was gluten intolerant. I ruled out celiac on my own because of one reason - I gained weight (about 60 pounds over 5 years, which is now coming off on its own after changing my diet). That doesn't seem to be the experience of many celiacs who lose weight due to malabsorption issues

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Giambi Newbie
Giambi
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

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mushroom Proficient
mushroom
Posted

I believe it's also possible to be "gluten sensitive" without actually having celiacs right???

According to today's diagnostic classifications, quite so. But the major definition of celiac disease is gastrointestinal damage, and we are now finding all the other places where it wreaks its havoc, so who is to say right now that these are not also manifestations of celiac disease as well as "sensitivity". It is an evolving area and the criteria may change over time.

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    • Sarah Grace
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      Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post. Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present! I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂
    • glucel
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      By glucel · Posted

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