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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
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Thanks for the replies/advice everyone!

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
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      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

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      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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