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Questions About Testing And Diagnosis

jessman1128

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jessman1128 Newbie
jessman1128
Posted

Hello everybody, I just discovered this site about an hour ago. I've poked around on the site some, but haven't found answers to any of my questions yet. That being said, it's very possible the answers are already here and I just haven't looked hard enough. If that's the case, please accept my apologies and I'd appreciate it if you could point me in the right direction. :)

I was diagnosed with narcolepsy in 2003, based on the results of my polysomnogram and MSLT tests. I've recently come to the conclusion that I most likely actually have idiopathic hypersomnia, not narcolepsy; I reached this conclusion based on the results of my sleep tests and information gleaned from various research studies that I read.

Anyway, the real reason why I'm here: A few days ago I stumbled across a post on somebody's blog and the post was discussing the person's theory that idiopathic hypersomnia is actually caused by an allergy to gluten. I was extremely skeptical of this and promptly disregarded the article. Yesterday I started thinking about what I had read and decided to do some poking around online. I quickly discovered a few more posts/articles elsewhere that discussed a possible link between the two, and then I soon saw mention of celiac disease.

I've heard of celiac disease before but had no idea what it was. I've now read a little bit about it on this site and a few others, and have discovered a few possible symptoms of it that I have had for many years, including GI problems, apparent inability to gain weight, teeth discoloration and loss of enamel, and so on.

So I now have a few questions:

-Should I get tested for celiac disease? Or should I get tested for gluten sensitivity? They're not quite the same thing, are they? It's possible to be gluten sensitive but not have celiac disease?

-If I should get tested, how does that work and how do I find a good doctor? Aside from my sleep doctor, I don't have a regular doctor that I go to. I've only been to a regular doctor one time in the last 5 years at least, and that was only after I was involved in a car accident.

-If I do want to get tested, I should not even attempt to go gluten-free until after I've been tested, right?

Thanks in advance for any advice you can give me, and sorry for the long post!

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2plustwins Rookie
2plustwins
Posted

So I now have a few questions:

-Should I get tested for celiac disease? Or should I get tested for gluten sensitivity? They're not quite the same thing, are they? It's possible to be gluten sensitive but not have celiac disease?

-If I should get tested, how does that work and how do I find a good doctor? Aside from my sleep doctor, I don't have a regular doctor that I go to. I've only been to a regular doctor one time in the last 5 years at least, and that was only after I was involved in a car accident.

-If I do want to get tested, I should not even attempt to go gluten-free until after I've been tested, right?

I just did the Enterolab gene test for gluten sensitivity and/or celiac sprue. I tested positive for gluten sensitivity and negative for celiac. I did not have to go back on the gluten to do this test. Some blood tests you are supposed to stay on the gluten though. Many doctors around here either have not really heard of gluten or think something else is the problem. I ordered the test through Enterolab myself and I am filing the claim to my insurance.

Hope this helps.

MELINE Enthusiast
MELINE
Posted

hi..

Well....you should keep eating gluten untill you have that test done.

As far as the difference between gluten intolerance and celiac is concerned.....I thought it was the same thing....there is a topic here in this forum and you can read some really interesting opinions on that. try to find it I don't remember where it is..... In my opinion, it is still the same thing (but I am not a doctor...)

And for finding a good doctor I am afraid I can't help you with that....I live too far....

Take care. Hope you find the solution...

happygirl Collaborator
happygirl
Posted

The blood tests you want ordered are: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

And you must be eating gluten...do not go gluten free until ALL testing is completed.

Any doctor can order the tests, just make sure they order the right ones. Bring the list with you. Or contact a local Celiac support group and ask them for ideas on good doctors.

Support groups:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

jessman1128 Newbie
jessman1128
Posted
  • Author

Thanks for the replies/advice everyone!

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