Narcolepsy Forum Posting

Posted by Snoozer on August 05, 2003 at 21:49:03:

Greetings!

I spent a lot of time on this board in the last 2 years and found you folks to be invaluable in helping me keep my sanity. I didn't post a lot, but I "lurked" here constantly. Perhaps I can help someone else out there now. This information will not apply to many of you who have cataplexy and all of the other classic signs of narcolepsy, but for those of you who are in a gray area, perhaps this can be of some help.

I was diagnosed 2 years ago with idiopathic hypersomnia. My sleep patterns had some characteristics of narcolepsy, but not all of them. My father and brother were both diagnosed as having narcolepsy. My sister also struggles with extreme fatigue. It took about 6 years of going to different specialists before I finally got the MSLT done and received my diagnosis and started on Provigil and Wellbutrin. I found those 2 meds to be absolute lifesavers for me. I felt my life was being drained out of me by the constant sleep attacks and mental fog. The medications gave me a life once again.

I'm writing this tonight because I have since found out that there was something else wrong with me that no one had figured out. The only reason that I was able to get it diagnosed is that I began to have gastrointestinal problems. Please keep reading, as not everyone has GI symptoms.

To make a long story (somewhat:) short, I found out that I have celiac disease, otherwise known as celiac sprue or gluten enteropathy. A recent study of blood bank samples showed that as many as 1 in 150 people in this country have gluten sensitivity and do not know it. It is also possible to have gluten sensitivity and not have any obvious gastrointestinal problems. It is an autoimmune disorder in which one's body creates antibodies that attack the small intestine (or other organ systems)if that individual eats anything with gluten in it. This means anything with wheat, rye or barley (and some think oats) can cause this autoimmune reaction. When this reaction occurs it flattens out the villi in the small intestine and drastically reduces the surface area. Without this surface area you cannot absorb micronutrients and important vitamins and minerals. People with gluten sensitivity have varying symptoms due to whatever system is weakened by the lack of nutrients or by the direct attack of the antibodies on that organ system. So it will be different for each person. The one main complaint that people with gluten sensitivity/celiac disease have is unremitting FATIGUE. Other typical symptoms include diarrhea, possibly alternating with constipation, gas, bloating, mental fog, etc. The list goes on and on (some symptoms are: peripheral neuropathy or ataxia, skin rashes, osteoporosis, anemia,to name a few) I know this may sound like a crazy catch-all illness but this is all true.

I wanted to post this information because now that I have been on a gluten free diet for about 3 months, I am getting energy once again. I have been able to entirely discontinue my Provigil (I was taking 600 mg/day) and I've reduced my Wellbutrin to one of the 150SR per day instead of two per day. My sleep attacks were real. My MSLT and the results (falling asleep in less than 5 minutes) were also real. However, there was a different problem underlying my neurological problem that no one in my 48 years had diagnosed. I've had this problem my entire life. It took until I was in my 40s for it to affect me neurologically. Now I am encouraging my family members to get tested for gluten sensitivity. This disorder can occur at any age. It is more prevalent in people of European descent, but it has been seen in people of all races.

If you think there is even a remote possibility that this could also be happening to you, I strongly encourage you to do some internet searches on celiac disease or gluten sensitivity. There are some very good, informative web sites on this subject.

Thanks to all on this board for the support you have given to me. I hope this will be of value to some of you out there.

Snoozer

Follow Ups:

• Re: Other possible diagnosis Shadow 03:56 8/07/03 (1)
  • Re: Other possible diagnosis Snoozer 19:00 8/07/03 (0)

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