<<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