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Self Diagnosed...now What?


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#1 Mom-Dude

 
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Posted 12 May 2004 - 06:26 PM

I stopped eating wheat products last August at the suggestion of a friend and felt much better. My blood tests in September though were "inconclusive" according to the MD. I have not seen the actual reports. After seeing the GI for a pre-endoscopy appt, I was told I'd have to go back to gluten for 4-6 weeks. I only made it two days before I was in such pain I went back to a gluten-free diet. Now that I've discovered gluten sensitivity though, I'm wondering if there are other tests I should have, or dietary supplements I should be taking? Is it OK to just acknowledge g sensitivity or do I need to pursue positive testing for celiac? From reading this forum, it seems that I should be asking someone for a bone density test. Which kind of MD do I go to for that? My own MD asked me which blood tests they needed to perform... didn't make me feel very confident.
Thanks!
Lori
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#2 taneil

 
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Posted 12 May 2004 - 07:05 PM

No one every said that you need a doctor to tell you that you should avoid something. If you have a diet that is working for you and you are feeling good on it than just go with it and don't worry about a dx unless you need one for another reason.

If you want a dx, (I don't blame you if you do) You could do the enterolab stool test which says it is sensitive enough to pick up gluten even after it has been eliminiated some times for up to 2 years. There website is www.enterolab.com It is none invasive and a test you do at home and then send it back to them. I would recommend the gene test and stool test. If the stool test comes up clear it may be because you have been gluten-free. But if the gene test shows that you have the gene that Celiacs have then you can know that you are probably gluten senstive from how you were before going gluten-free.

Another thing to note is some doctors dx celiac disease by using a gluten challenge, which sounds like you did and are sensitive.

By the way, your doctor may not know very much about celiac disease, but be happy he was willing to ask what tests you need. A lot of doctors won't even admit they don't know something like that. The blood tests probably won't show anything because you have been gluten-free to long.

Hope this helps :)
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Taneil
Enterolab Diagnosed May 2004
gluten-free/CF and have both genes

Psalm 27:13-14
I would have despaired unless I had believed that I would see the goodness of the LORD In the land of the living. Wait for the LORD;
Be strong and let your heart take courage; Yes, wait for the LORD.

#3 tarnalberry

 
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Posted 13 May 2004 - 06:01 AM

I've opted not to go any further than dietary challenge. And due to the few occasions where I have gotten "glutened", I've come to recognize the response my body has (it's different the first time, as opposed to how I am if I constantly eat gluten... it's an interesting pattern), so I'm comfortable with a dietary challenge having determined this. And my GP is willing to take it as a confirmation as well. Some of my other doctors are more skeptical, but I don't really care, as it's up to me to manage it, not necessarily my asthma doc or the like.

I'm not sure about other tests, as I haven't looked into it as much as I should...
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 plantime

 
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Posted 13 May 2004 - 07:34 AM

I agree with Tiffany. My doctor accepted the dietary challenge, now it is up to me to eat right for me. Even if my doctor had not accepted it, the outcome would have been the same. I had already changed my diet, was feeling better, and refuse to go back.

So, Now What? Now eat right for your body, and take care of yourself.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#5 Mom-Dude

 
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Posted 13 May 2004 - 11:40 AM

Thanks for the reinforcement folks - I guess I'll just continue on my road of trying to learn a little more every day. This site certainly helps with that! Last night I printed a list of gluten-free products that I found here...Wow! 42 pages of food that I CAN eat :P
Blessed be,
Lori
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