<<Disclaimer: Verify this information before applying it to your situation.>>
Hi everyone,
Thanks a lot for your help. I will transmit all information to my cousins
and aunt so they can take advantage of your experiences and opinions. I
received a lot of responses and very helpfull too.
Here are your messages :
__________________________________
Hi Johanne,
Go to:
http://www.cadvision.com/~embrya/
You will find some excellent information about gluten and M.S.
also, if you can get access to a medical library, you can look up the
following articles:
Yacyshyn B, et al.
Multiple sclerosis patients have peripheral blood CD45RO+ B cells and
increased intestinal permeability.
Dig Dis Sci. 1996 Dec;41(12):2493-8.
PMID: 9011463; UI: 97148660.
Hukkanen V.
Lectin-reactive components in white matter membranes from normal and
multiple sclerosis brains.
J Neurochem. 1982 Jun;38(6):1537-41.
PMID: 7077325; UI: 82191660.
Hadjivassiliou M, et al.
Idiopathic cerebellar ataxia associated with celiac disease: lack of
distinctive neurological features.
J Neurol Neurosurg Psychiatry. 1999 Aug;67(2):257.
PMID: 10475765; UI: 99402018.
Hadjivassiliou M, et al.
Gluten sensitivity: a many headed hydra.
BMJ. 1999 Jun 26;318(7200):1710-1.
PMID: 10381684; UI: 99310705.
Hadjivassiliou M, et al.
Clinical, radiological, neurophysiological, and neuropathological
characteristics of gluten ataxia.
Lancet. 1998 Nov 14;352(9140):1582-5.
PMID: 9843103; UI: 99057237.
Hadjivassiliou M, et al.
Neuromuscular disorder as a presenting feature of coeliac disease.
J Neurol Neurosurg Psychiatry. 1997 Dec;63(6):770-5.
PMID: 9416814; UI: 98077296.
Hadjivassiliou M, et al.
Does cryptic gluten sensitivity play a part in neurological illness?
Lancet. 1996 Feb 10;347(8998):369-71.
PMID: 8598704; UI: 96169974.
Matheson NA.
Letter: Food faddism.
Am J Clin Nutr. 1975 Oct;28(10):1083. No abstract available.
PMID: 1180240; UI: 76037502.
I hope that is helpful. If you need further information, look at molecular
mimicry.... most of the publications focus on peptides from bacterial and
viral sources, but some look at dietary peptides. The best informed work,
in my opinion, looks at both.
best wishes,
_______________________
Hum Nutr Appl Nutr 1984 Dec;38(6):417-20
Is there a role for gluten-free diets in multiple
sclerosis?
Hewson DC
This brief paper presents findings of 17 (3.4 per cent) of the patients
involved in the ARMS research programme which is investigating the role
of nutrition and physiotherapy in the management of MS. These 17 were
following gluten-free diets. Our findings support the view that there is
no conclusive evidence that GF diets are universally beneficial in the
management of MS.
PMID: 6526687, UI: 85130306
______________________
Hi Johanne,
I also have MS although I have been in remission for years it is only
last year I discovered I was celiac. Many symptoms have disappeared
since I went on my glutten free diet. I would like to hear if you
have alot of letters like mine, confirming a connection between M.S.
and celiac. Thanks
______________________
From personal experience:
I was having muscle and joint aches all over. First one joint area, then
another. One joint area would be affected for months. At times I thought I
had carpal tunnel, then it would move to my elbow. Then, it felt like
tennis elbow. BUT - I was not using my joints in such a way that I should
be suffering these problems. Finally, my husband suggested that some people
do have allergies to wheat and milk and other foods that exhibit as joint
and muscle pain, some suffer arthritis. I did some web searches to confirm
(he is always right about these things, I don't know where he learns it).
And - I stopped milk first and started feeling better in a week. Problems
persisted and in a month I added wheat products, and in another month gluten
products. It has made such a dramatic difference I cannot begin to think
how crippled I would be if I hadn't stopped. I was almost unable to carry a
gallon of milk to the car (just 8 pounds) - it just hurt so bad. Gripping a
door knob to get in the house was sometimes a challenge. Hey - I was just
40 - I did not believe it was just "age". I still have some aches off and
on, but it is so different.
I did not have testing done. I saw one doctor who made little of what I was
thinking and there weren''t many other choices in our town. I have a good
medical background and used myself a my guinea pig.
So - tell them, it is possible. If they don't want to test, just try it for
a week. If it is better, then eat their regular diet and get tested!
______________________
you can be overweight and have celiac, I went on the diet 3 months ago and I
am feeling much better.The muscle pain has been greatly reduced. My doctor
also told me you do not have it but if you want I will do the test. the
biopsy was positive.
______________________
I, too was overweight and sneered at by the g.i. doctor I went to! He
said, " Well, excuse me but you are NOT nutritionally deprived!" Then
he sneered! I jumped his case and said, "Oh, doc have you not done your
homework! Fat people have C.D. I've been on a listserv and know this
for a fact. There are also papers written by well known docs that there
are fat celiacs! I happen to have thyroid disease!" I could never get a
doc to put me on thyroid because i would not show up on the tests. I
went for years with out thyroid meds and gained 100 lbs. over 20 years!
Finally I got put on meds when I finally showed up on the more sensitive
thyroid test! I knew 25 years ago I had thyroid disease because my
basal thermometer temp was so low, a sure sign, but would U.S. docs pay
attention? No! They are so ignorant of auto immune diseases it is not
funny! I am 5' 7" and weigh 190 lbs, down from 232 lbs. Sorry, don't
know how to convert to British weights. If I didn't have this list I
wouldn't know anything, because I have as yet not run into any decent
doctors knowledgeable of celiac disease in this part of the country.
Because of being on this list and researching things, reading medical
papers, etc. I know more than all of the docs I have come across. I am
real tired of having to educate doctors and the blase attitude they
have. If they could feel the tremendous pain of ONE of my attacks, they
would take me more seriously. Sorry, to get on my "high horse" but I
really fume and see red, when a doctor "says" a person can't have celiac
if they're fat! Not true! Just do a survey of people who are fat on
this listserv. You will be surprised. By the way, I am a blood tested,
(positive) biopsied( positive for celiac) diagnosed celiac. Hope this
helps! Sincerely,
______________________________________________
Unbelievable! Tell your cousin that there are many many many many Celiacs
who are overweight. Not all symptoms to a disease appear on all people!
Tell her also that many people have cured CANCER by altering there diet!!
Poor nutrition is usually the cause of most diseases (in my opinion).
Please try and convince her that it is worth a try! She may be pleasantly
surprised!
______________________________________
Hi!
Please try and get the book "Can a Gluten-Free Diet Help? How?" by Dr Lloyd
Rosenvold, Published by Keats Publishing, Inc., 27, Pine St.,
(Box 876) New Canaan, Connecticut. 06840-0876
ISBN 0-87983-538-9 (about $10)
It specifically talks about Multiple Sclerosis amongst a lot of other
symptoms.
_____________________________________
I would suggest that you contact the Canadian Celiac Association and ask
for the pkgs of info that were compiled last fall, then give them to your
relatives to take to their doctors. Obviously, they need a little
education about celiac disease. I don't know if the info is also available
in French or not.
Good luck; I know how frustrating this can be.
____________________________________
Hi,
I would encourage anyone with fibromyligia or myofacial pain syndrome
and MS to try gf diet. I met criteria for myofacial ps which is similar
to fm and dx with "possible MS". My husband has fm. We both been on gf
diet for several months. He has had 80% reduction in pain. I am pain
free and have had reduciton in all the sx associated with MS.
Improvement in coordination and balance was especially appreciated as I
don't "fall over" at odd times and don't trip and drop things all the
time.
If you search the net using +firbrobyligia +gluten in your search limit
you will find a lot of info about the coorelation of fm and
sensitivities to various items with wheat and gluten being at top of
list.
Good luck.
__________________________________
hello
I was diagnosed with MS before finding out what I had was CD. It is worth
being tested although it's hard to find a doc who WILL test after a MS
diagnoses but be persistent! It's well worth it. By the way I was
overweight too but lost all the added pounds (almost 50) after starting a gf
diet. You CAN be overweight and have celiac. Here are a couple sites to
get you started. The Lancet has a great one to but I have misplaced it,
sorry.
http://www.nfinity.com/~markhaar/preview/neurocomp.html
http://epilepsy-international.com/meetings/abstracts/aaaaaaac/0/1147/
http://www.orthomed.org/news/abstr10.htm
I hope this info helps you and your aunt!
_______________________________
Johanne
I am living proof that `ms` symptoms improve on a gluten free diet,and I am
in contact with others the same.
6 years ago,I suffered very bad ataxia,went to the neuro,who didn`t bother
testing me for anything else,and diagnosed me with MS.At exactly the same
time,the vile stomach problems started,my doc tested me for infection and
cancer.....all negative,so he said it was part of MS,annd I must learn to
live with it.
I did,for 4 years,lost a hell of a lot of weight,and sank further and
further down the black hole.Then,by a series of amazing coincidences,I
discovered it was gluten that was causing all my stomach problems,and my
(new) doctor diagnosed celiac disease.The week after I stopped eating
gluten,my neurological symptoms started going.......18 months on,and they
are still going.My doctor doesn`t understand how giving up gluten can make
my neurological symptoms go,but I have read published papers that in some
cases of celiac disease,there can be neurological
symptoms....unfortunately,not too much research has been done on this,no
money to be made by drug companies by telling people to give up gluten!
Anyway,if you,or they,want to know any more,please feel free to email me,and
I`ll provide what information I can
Its worth the hassle of a gluten free diet,to come alive again.....without
the need for drugs!
____________________________________
when I was finally tested for cd, I was 250 pounds. Overweight can be cd,
too Dr Murray talks about a patient he has who is 350 punnds
________________________________________
Hello Johanne,
VERY GOOD QUESTION - I am having the same problem.
Would love any information that you find helpful -
Really appreciate it.
______________________________
My friend has MS and only the gluten free diet has helped her. Dr.
Swank in Oregon treated her and recommended following his diet. Check it
out. Her tests come out negative for celiac because she is gluten free.
Her baby died years ago, who she thinks must have had celiac. She would
highly recommend the book below which I found on Amazon.com:
The Multiple Sclerosis Diet Book : A Low-Fat Diet for the
Treatment of M.S. by Roy L. Swank, Barbara Brewer Dugan
List Price: $29.95
Our Price: $20.97
You Save: $8.98 (30%)
Availability: Usually ships within 24 hours.
Hardcover - 391 pages Rev&Expnd edition (April 24, 1987)
Doubleday; ISBN: 0385232799 ; Dimensions (in inches): 1.32 x 9.54 x 6.39
___________________________________
Thanks again for your responses.
Johanne
Montreal QC Canada
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