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Hi!
Thanks for all the replies! It was very, very interesting!!!
27 so far have replied that they too had extreme fatigue, a "drugged feeling",
CFS and/or occasions where they had to practically torture themselves to
stay awake in their cars, movie theaters, classes and meetings at work.
All but a few have seen a significant reduction of the fatigue and
inappropriate falling asleep since going on the GF diet. The few that haven't
improved significantly were only recently started on the GF diet ... I think
it took me at least 4 months to be convinced about what makes me feel
"drugged" and how to avoid it.
Many also believed that sugar was the remaining cause of fatigue attacks for
them, and one or two added other food allergies on top of carbs. One had
hypothyroidism, yet still didn't feel as energetic as the rest of the
population with treatment.
Another person suggested testing for fungus infections, and that she could
wake up when the fungus was under control - I am assuming yeast infections
because I am also pursuing that possibility due to the fact that many of my
Narcolepsy listmates have found fighting systemic yeast infections have
reduced their daytime sleepiness.
Interestingly I have posted reversed questions to the Narcolepsy people about
other problems that they have in addition to their narcolepsy, and many have
symptoms that resemble CD - which NONE of those extra symptoms are ever
considered part of narcolepsy.
They reported having a few other problems like: mild to moderate abdominal
pains, fuzzy head/inability to concentrate, irritability, anemia and muscle
pains. Some even had itchy skin and swelling legs and fingers. Several also
had diarrhea and almost all said that their doctors said that it was just
"stress" from the constant fatigue of narcolepsy - or their medication, and
that it was a small price to pay to stay awake. (hmmmm?)
While this doesn't necessarily help us with CD - we are the ones getting
better, and maybe this will help some of those with Narcolepsy. I have had N
for 16 years, and I have tried all the Narcolepsy medications - the GF diet
was the ONLY thing that ever helped.
HOWEVER!!!! There is a possible cure to narcolepsy being tested right now.
There is a proven lack of "Hypocretin" in the majority of narcolepsy
patients, and they think it can be replaced through injections to balance it
out. It would be interesting to find out what the Hypocretin effects other
than fatigue.
Researchers are also suspecting that N is an autoimmune disorder as well. One
person asked about how close the HLA tests for CD are to the HLA test for the
N. I don't have the HLA test info handy on the Cd, but here is an excerpt
from BioBeat Breakthroughs on the HLA tests for N. found at:
http://www.appliedbiosystems.com/ab/BioBeat/
Thanks again for all the info, and best wishes to all!
Christie
St. Louis, Mo. USA
Linkage of Human Narcolepsy with HLA Association to Chromosome 4
A genome-wide linkage screening of Japanese multiplex families with members
afflicted with either narcolepsy or essential hypersomnia syndrome (EHS)
revealed that a susceptibility locus for narcolepsy exists on chromosome 4.
This study, conducted by Dr. Tadao Arinami and a group of Japanese
researchers, suggests that 4p13-q21 represents a second locus for human
narcolepsy with HLA association, possibly meaning that, in humans, the
genetic predisposition to narcolepsy is determined largely by two loci (HLA
DQB1*0602 and 4p13-q21). Narcolepsy is a sleeping disorder characterized by
excessive daytime sleepiness and cataplexy. Cataplectic attacks are
involuntary relaxation of postural muscles triggered by instances of extreme
emotions such as joy, anger, or laughter. Previously, a genetic factor
predisposing individuals to narcolepsy had been localized to the human
leukocyte antigen (HLA) class II region. An association between HLA allele
HLADQB1*0602 (most often in combination with HLA DR2/DRB1*1501) and
narcolepsy suggests that narcolepsy is an autoimmune disorder.
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