Narcolepsy and gluten

Celiac Disease
#1

Hi, I’m a new member. I do not have celiac’s disease, as far as I know. I have narcolepsy. Some studies have been done that has people convinced that narcolepsy is also a gluten problem, something about the gluten chemical binds with the receptors for narcolepsy receptors, causing extreme daytime sleepiness and inability to sleep in the deep stages of sleep.

I am going to start the GF diets to see if it helps my narcolepsy. I take meds at night to help me deep sleep at night, and that helps a lot. But if the GF diet helps too, all the better.

I am going to start with breads and pasta. If I can live with GF products, I think I can handle the rest. But I crave breads and pasta, casseroles and bagels, etc. So I plan on getting a few loaves of bread and starting there. I have to be on the diet for up to two months to see any difference. But I hear the difference is amazing.

I joined the Celiac Disease forum here, because I think it will be the best place to discuss the diets with people.

wahela

#2

I was told I had celiac and was on the diet for about a year but was still
sick but my stomach was better, just other problems. I had a hard time finding
something to eat and lost a lot of weight which I could not afford to loose.
I had lots of blood work from an internist and he said I did not have celiac
but I stay on the diet more than half of the time because I find it helps me
and I don’t feel sluggish all the time and as tired as I use to. I find that
bread products make me feel tired more than anything else.

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#3

Were you eating wheat products at the time the blood work was ordered?

If you had been on a gluten free diet for more then 2 days, the test will be
negative for Gluten Intolerance.
Same with the Endoscopic biopsy, you have to be on gluten products at least
twice a day for at least 4 months to show positive for Celiac damage.

So if the testing was done after you had been gluten free, then of course it
would show negative.

I would ask for a second opinion if I were you.

Bette

----- Original Message -----
From: “skinnymama” celiac-cpt6635@lists.careplace.com
To: ekwant@comcast.net
Sent: Tuesday, November 06, 2007 4:06 PM
Subject: Re: [celiac] Narcolepsy and gluten

I was told I had celiac and was on the diet for about a year but was still
sick but my stomach was better, just other problems. I had a hard time
finding something to eat and lost a lot of weight which I could not afford
to loose. I had lots of blood work from an internist and he said I did
not have celiac but I stay on the diet more than half of the time because
I find it helps me and I don’t feel
sluggish all the time and as tired as I use to. I find that bread
products make me feel tired more than anything else.

#4

I would like to know if you have any scientific journal articles or studies linking narcolepsy and celiacs disease. This interests me because I used to have a huge problem with excessive daytime sleepiness. I used to have to pull over driving home from work to sleep for a few minutes to several hours because I couldn’t stay awake while driving. I saw a Doctor and he recommended a sleep study, but my insurance wouldn’t pay for it. Five years later I was diagnosed with celiacs disease, and I rarely feel tired during the day. On the odd occasion that I do fight to stay awake perhaps I should look to see if I have been accidentally glutened.

#5

Maybe you should have your sugar checked, I have Celiac disease but I am also diabetic (type 1) I have been told that the 2 diseases are related. When my sugar is high, I too need a nap during the day, it is amazing how sleepy you get.
Wendy