17 replies to this topic

[Looking for answers]

Hi Candy
I got a little worried when I read your post. I have narcolepsy and used to do just what you did. I binged on coffe and caffein for years. As Sjogren's is an autoimmune disorder - adrenal burn out - which huge amounts of caffein causes, is of concern.
I am sure you must have thought of getting tested for narcolepsy? I am not for drugs - but sometimes one type of drug might be less damaging than others - and some of the narcolepsy drugs are not stimulants. How is your nightsleep? and what do you do for a living.
Is wheat all you have cut out and what other things have you tried. Did your doctor test your vitamin D levels, Hb1Ac, Iodine and RBC magnesium? Have him do an adrenal test just so you don't make yourself worse in the long run. I did a number on myself and have worked years to try to repair the damage- not easy...

I was diagnosed with Sjogren Syndrome as well and battled fatigue too. I later found out that I am also intolerant to other foods and after eliminating them I am much better. I don't even need coffee anymore. I do still drink Green Tea because it's been proven to help protect the salivary glands of Sjogren Symdrome patients.

[AerinA]

I'm one of those people who hasn't been formally diagnosed either Celiacs or Narcoleptic... I had very "abnormal" sleep studies (very close to narcolepsy diagnosis but was five minutes too slow at falling asleep,) so my insurance won't cover any prescription medicines to help. My doctor doesn't think it's worth putting me through a biopsy for celiacs even though I have had vitamin D deficiency and wasn't absorbing medication. Does anyone know whether keeping on the gluten free diet will help my "not-quite-narcolepsy" if I do not have celiacs, or should I push for the biopsy to try to rule out gluten as a factor? Or just go gluten-free anyway? I'd appreciate any competent advice at this point.

Thanks!

[jennennyc]

Just recently we have come to discover that my husband has narcolepsy. His sleep problems have caused many problems both at home and at work, but we had previously just chalked it up to him being lazy or out of control of himself for no good reason (poor guy!) When I found out that I had celiac, Hubby joined in and went gluten free too. The narcolepsy went away within a week or so but returned a few days ago when Hubby gutened himself. It was this reaction that lead us to question his sleep behaviors and discover the underlying condition. Now we are wondering if Hubby is celiac too. Does anyone have any info on Narcolepsy and Gluten? I have read a few things that ties the sleep disorder to auto immune disease, specifically celiac, but this is only a "theory." Did anyone else have narcolepsy that went away after going gluten free? Thanks.
-Anna

I haven't been diagnosed yet, but I'm just starting to try a gluten-free diet. I don't know for sure because I can't afford a sleep study, but I have cataplexy with stress or fatigue and can fall asleep just about anywhere (including stancing up on the train!). Also, my REM cycles are all messed up (I start dreaming before my head even hits the pillow and sometimes even during the day or while I'm driving!). I guess I haven't been gluten-free long enough to see if it helps, but my acupuncturist, who recommended I try it (because I kept coming up negative for everything my G.P. tests for) said that she's seen these symptoms in other gluten-intolerant/celiac people she's worked with, so I think it might be related. Obviously, I'm no expert, but I do think I'm in a similar situation, so it seems likely to me...