Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Questions About Testing And Diagnosis

jessman1128

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748
    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.