Multiple Sclerosis

[Lori2]

Have any of you had a diagnosis of MS and have it improve or go away when you went gluten free? I have been reading about the prevelance of MS in Celiacs and wondered if I should mention it as a possibility to a friend who has just been diagnosed with MS.

[cyberprof]

Have any of you had a diagnosis of MS and have it improve or go away when you went gluten free? I have been reading about the prevelance of MS in Celiacs and wondered if I should mention it as a possibility to a friend who has just been diagnosed with MS.

There are some members that had MS diagnoses or that were suspected of having MS. Perhaps they'll jump on.

My personal opinion is that no human (with the possible exception of those with only DQ4 genes) should ever eat wheat. MS, RA and diabetes are, IMHO, caused in some way by gluten ingestion and a combination of other factors. My MD agrees with me and she's a diabetes expert. So I would suggest to your friend that going strictly gluten-free can't hurt her health and may help.

[mommida]

I would not try and give any false hopes of a "misdiagnoses" of MS.

I would share some information about the gluten free diet along with other diet changes being helpful for MS.

Someone I know casually has made a change for the better going gluten free, casein free, and I believe she avoids sugars. This change was brought on by the fact she could no longer afford her medication. It was one of the only things she could do to help herself. She looks more than 10 years younger! I didn't notice if her limp was better, because I just didn't notice a limp the last time I saw her.

[NoodleUnit]

I was convinced I had MS from about November last year til just about 2 months ago. Had all the signs, and my neurologist at the hospital was worried about it too. At one point I lost the use of my right arm and couldn't hold my head up. The doc sent me for MRIs, CT scans, you name it I had it done. Thankfully they've come up clear and it wasn't until I had a bad reaction to pasta that I began to figure it all out ( see here for the full skinny ).

My neuro is now as convinced as me that I have celiac disease. In fact it was a desperate search for my symptoms on the internet that originally led me here, unaware at the time that I had a gluten problem. This thread and this one turned up in my search, yet I went on for another 3 months before I finally properly twigged that it was gluten that was causing it.

mommida is right about false hope though, the fact of the matter is that a lot of MS sufferers simply also have a gluten problem, they are not mutually exclusive. However it may be worth a try, simply to see if it reduces any neurological symptoms. The connection is interesting though, gluten seems to be at the root of a lot of ailments, and certainly makes sense of a lot of problems I've had over the years.

[cyberprof]

I would not try and give any false hopes of a "misdiagnoses" of MS.

I would share some information about the gluten free diet along with other diet changes being helpful for MS.

Someone I know casually has made a change for the better going gluten free, casein free, and I believe she avoids sugars. This change was brought on by the fact she could no longer afford her medication. It was one of the only things she could do to help herself. She looks more than 10 years younger! I didn't notice if her limp was better, because I just didn't notice a limp the last time I saw her.

Just so I'm not misunderstood: I don't think all or most cases of MS or RA or Type I diabetes can be reversed or eliminated by going gluten-free. I think that going gluten-free MAY relieve the symptoms for some people, some of the time. I also think the same thing about gluten-free for autistic kids.

I do think that - maybe way in the future - gluten will be shown to be a trigger for these other autoimmune diseases. Maybe not the only trigger but a potential one.

[mommida]

I think there is enough proof that gluten free can improve health in more cases than DH/ Celiac.

I think it is hard to hear a diagnoses of any disease that will affect the rest of their life. I wouldn't want anything to encourage a person to not accept and face the illness. I would only want to be a friend to help the person adapt to the situation. A patient can take control of overall health through a better diet, exercise, stopping unhealthy behaviour, and taking prescribed medication.

I do believe a positive attitude is one of the most important things in life.

[Takala]

I was told by several different doctors at the initial examination that I probably or could have it. Dating back to the early 1980's. Ugh.

Underwent the spinal tap thing too decades ago, surprise it didn't show it but there I was with all the symptoms. About 8 years ago had another neuro want to do the spinal tap thing again and told her hell would freeze over before that happened. (had bad complications the first and only time).

At that point I was getting pretty mad that no body was taking it seriously when I said I had lessened my symptoms by going grainless, was thought to be a quack or a head case with a bad spine and arthritis.

Well, bleep them, NOT IN A WHEELCHAIR YET and NOT USING A CANE now. Can feel my hands, feet.

I am a ferocious reader, and found lots of references to diets and symptoms of ataxia.

Of course, this is anecdotal, so your friend may want to research the increased incidence of MS in the celiac and gluten intolerant population.

Start here, this is recent : MS Linked to celiac and gluten sensitivity Open Original Shared Link

in the comments section is this site on treating MS with diet changes (the only thing I think is funky is grouping nice beans in with what can be "evil" soybeans.... let your reactions be your guide) Direct MS. org Open Original Shared Link

This is not about "false hope" but it is about the potential to feel better, because the two conditions of MS and celiac/gluten intolerance are not mutually exclusive. At least trying a gluten free diet out for a while doesn't hurt anybody.

I don't think wheat is bad for everybody, btw, but I think it's bad for a much greater % of the population that anyone is going to admit to in my lifetime.

[mommida]

False hope was a poor choice in wording. I didn't want any person not believing the diagnoses of MS.

I do believe the diet changes should be part of the treatment.

You know things can get really out of hand here with "show me your research papers" posts going on for days. (In fact there is a post starting to lean that way)

[YoloGx]

Five years a go blood tests determined that the myelin sheath on my nerves had degraded down to 50%. At the time my doc. said I was also low on B-1 even though I was taking B vitamins. I then started taking co-enzyme B complex, and noticed a positive difference within 2 weeks--my heart stopped racing. However it took another year and a half before I discovered I needed to avoid all cross contamination with gluten in order to feel and be a lot healthier. I have discovered since then that I am a lot more sensitive than the average celiac. I can't tolerate glutino products for instance. I also have discovered I need to stay off salicylic acid as much as possible--since that too seems to create neurological problems for me. I had gotten to the point where I got flaking itching ears and nethers as well as worsening sleeping at night due to nervous tremors and electric like jolts all night. Yoga and walking help but could not do the whole thing. So going of high to medium salicylic acid has made a huge positive difference for me. Salicylic acid (SA) is in all kinds of herbs, vegetables and fruits, the highest density being in the skin. I find I still often need to take something to help me sleep at night like benedryl--which also lessens any response I might have to stray SA.

Ironically years ago I took care of two separate people who had ms. (I worked as an aide). Both had grown up near Hanford. I also was exposed to radiation from Hanford. I developed coeliac as an infant after Hanford released radiation into the atmosphere in December of 1949. It was a test to see what would happen to the local population. Apparently they did another full release when i was 2 years old when my parents had us camping out along the Columbia River. Thanks very much! I think maybe there is a connection. Unfortunately my docs took me off my gluten-free diet when I was 4 since I was able at that time to continue to grow while ingesting gluten (whereas initally when I was 4 months old I had stopped growing plus got pneumonia from eating gluten). They forgot to notice that my general health then started to go down hill. I didn't tell them about all the visions I had! I think it was affecting my nervous system right from the get go.

I thus encourage you to go gluten free, and if necessary look into other possible allergens or sensitivities too. And yes, its best to also avoid sugar...

[eatmeat4good]

There was a woman who wrote on here that she was diagnosed with MS and was on the Montel Williams show to talk about the diagnosis. Years later she found out what she really had was Celiac...all her symptoms resolved and now she works to spread the word to others with MS that they may need to be tested for Celiac or go gluten free to see if it may be the case for them. Celiac is often misdiagnosed as MS or Fibromyalgia or Major Depression, or Schizophrenia...etc.

If gluten free resolves her symptoms...think how thrilled she would be. If there is any chance of symptoms resolving it is worth a try. Tell her about it. She can google and see if she thinks it applies to her or not.

I tell people all the time to go to Celiac.com and see if their symptoms match when they tell me about one or two that could be in the celiac category. It isn't my job to diagnose...but it is my responsibility to spread the word about what gluten has done and can do...then people can figure it out for themselves.

[seriously confused]

I am hoping there is a connection between MS and Celiac. I have both and if eating a gluten-free diet can impact my MS, then I am jumping for joy. I know the studies are early but I am hopful. I have not had many MS symptoms so I could not tell you for sure if the gluten-free diet has helped or not. I haven't been taking my MS meds at all, for over a year, when I started the gluten-free diet. And also haven't been faithful on the MS meds for over 4 years. They just did another MRI so they could see what kind of affect this is having on me. But I agree that a positive attitude has made a great difference for me. I will not let either disease control me.

[Chrissyb]

I have had MS for 12 years now and been gluten and dairy free for over 4 years. Unfortuntely I have not noticed any change in my MS symptoms. Everybody is diffferent and will respond differently. I agree with not giving anybody "false hope" Going gluten free certainly won't hurt her but it may have no effect on her MS either.

[ravenwoodglass]

I think whether the diet helps or not depends on whether the MS was a misdiagnosis. The lesions that are found with MS on an MRI are very similiar to the lesions that can be caused by celiac, UBOs. I was also thought to have MS when lesions were found on my MRI but the doctor said they were not in the right place. Some doctors would have diagnosed but he chose to do a spinal tap which didn't show the typical debris that is found that confirms the MS diagnosis so I got a shrug and an 'I don't know what they are, lots of people have them and they mean nothing'. I didn't discover until years later when my MS symptoms had resolved that the UBOs are diagnostic of celiac that has attacked the brain.