Ms Symptoms

[PicturePerfect]

Could MS symptoms be caused by Celiac Disease?

[Nantzie]

I have heard that it is. I have a family history that is suspicious for both digestive and neurological manifestations of celiac, and one of my cousins was diagnosed with MS.

I did a websearch for you and found this on the BrainTalk boards. From what I understand they tend to discuss the neurological aspects of gluten on that board a lot more than here, so it might be helpful for you to post a question there as well.

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Nancy

[lgleeson]

Could MS symptoms be caused by Celiac Disease?

<{POST_SNAPBACK}>

I am a newly dx celiac and I started having a lot of neurological symptoms. Vitamin B-12 deficiency can mimic MS symptoms. Because you are not absorbing well before diagnosis, it is common for celiacs to be deficient. My vitamin B-12 blood levels were normal, but the doctor still thinks I am deficient on B-12. Your body can "leach" the B-12 from your body in order to keep your blood levels normal. I have been having shots weekly and do feel better, although he said I will not feel completely better for 3-6 months.

[lizzy]

i too have neurological problems and when i get glutened like i did over the past couple of days i have seziures, and last night i was having them on and off for 30 mins ,which upset me as i havent had one for 5 weeks now and was doing really well. so today am relaxing as it takes alot out of me plus the diarrea on top dosent help, m hubby surgested i keep a list of items i have eaten to try and find the culprit, which i am going to do.

i found on the hasty pasty the tie to my neurololical problems and celiac then i went to see my doctor with my findings, this is a good sight with a lot of useful info

[PicturePerfect]

Thanks for all of your help!!!

[Claire]

The brain damage that causes various neurological symptoms including ataxia, essential tremors and peripherel neuropathies - all look very much the same on MRI. The neuron degeneration - the demylyenizing of the nerve sheath is widespread through the brain with MS - more localized in cerebellar ataxia - which can be caused by celiac, non - celiac GS and other causes.

Because those who have an autoimmune disease usually do not have just one. A celiac person may well have MS as well. This was brought to my attention when I had my recent evaluation at NIH. They did suggest that I may well have not one but two different disorders. Claire

[Jnkmnky]

I know someone with MS and they just don't want to hear this association. Is there a way to discuss issues like this and actually help? I feel bad like I turned the person off completely and all I did was suggest he look into a connection between the two diseases. It's so awful to think bringing it up may have made the person hide from even considering it. What if it could have helped.. Does it actually help???

[Claire]

I know someone with MS and they just don't want to hear this association.  Is there a way to discuss issues like this and actually help?  I feel bad like I turned the person off completely and all I did was suggest he look into a connection between the two diseases.  It's so awful to think bringing it up may have made the person hide from even considering it.  What if it could have helped..  Does it actually help???

<{POST_SNAPBACK}>

The people who need help the most are usually the ones to resent it.

No one likes the idea of having to 'give up' something. We are all quite entrenched in our presumed birth right to all good things.

MS is a tough sentence and I am sure this person doesn't even want to think about having yet another disease.

If you get another opportunity you might try presenting the fact that gluten is being removed from the diets of many people with neuroplogical disorders. Leave out the celiac connection. Tell him this is helping others, it might just help him. It won't cure his disease but it may well slow down the degenerative process. That is worth doing in my perspective and I think also in yours' but perhaps not in his.

Just look at the number of people who are eating, drinking, drugging or otherwise destroying their own health. They flaunt their defiance. There is nothing you or anyone else can do to chance that. Offer help once - maybe twice. After that you have to assume that the person has made a decision. Claire

[Lisa]

I don't know much about MS, but I looking in to it now. I have a first cousin with MS and I have not seen her in many, many years and don't communicate because of distance.

I have muscle weakness and my hands and arms sort of tremer, almost spastic. I don't know whether this is gluten or something that I need to watch for. Before going gluten free, I would catch myself walking sideways and getting on and off a dock, my balance was all messed up, that I almost had a panic attach. I froze and had to ask my husband to help me. I have always been around boats and jumping on board was never an issue.

Sometimes, I can't even type because my fingers are all over the place. I hope that this is a gluten issue, but concerned about MS.

Does this sound familiar to anyone?

Lisa B.

[Claire]

I don't know much about MS, but I looking in to it now.  I have a first cousin with MS and I have not seen her in many, many years and don't communicate because of distance.

I have muscle weakness and my hands and arms sort of tremer, almost spastic.  I don't know whether this is gluten or something that I need to watch for.  Before going gluten free, I would catch myself walking sideways and getting on and off a dock, my balance was all messed up, that I almost had a panic attach.  I froze and had to ask my husband to help me.  I have always been around boats and jumping on board was never an issue.

Sometimes, I can't even type because my fingers are all over the place.  I hope that this is a gluten issue, but concerned about MS.

Does this sound familiar to anyone?

Lisa B.

<{POST_SNAPBACK}>

Very familiar to me. If you have read any of my posts you will know that I do not have celiac disease. No test yet for the other side of the celiac coin - gluten sensitivity. I have been diagnosed with cerebellar ataxia but that is not confirmed. Confirmation is by DNA testing and this is in the rare disease category so it will be mid January before I have a confirmation - or they tell me they were wrong. I think they are wrong.

Though the disease entities differ the symptoms of gluten ataxia, MS, cerebellar ataxia are all very similiar. Progression and prognosis also differ.

Naming the symptoms is a far cry from identifying the cause - this I can swear to! These symptoms are serious and warrant immediate attention from the best neurologist you can find.

If you are brushed off, find another doctor.

It is unlikely that this is MS - but it is possible. The sooner MS is dedected the better position the patient is in.

If you have a celiac disease diagnosis then the chances are you have Celiac ataxia or at least the beginning of it. The arm tremors sound like essential tremors - common in most all ataxias but also with MS

I don't recall your circumstances. gluten-free? How long? How long did you have celiac disease symptoms before diagnosis. Neurological damage is. in most cases, slowly progressive and then all of a sudden you start to notice incidents such as you describe.

You wrote: "Before going gluten free, I would catch myself walking sideways and getting on and off a dock, my balance was all messed up, that I almost had a panic attach" Are you better now that you are gluten free?

Please get an opinion of this right away. For your own peace of mind of course but also to get a handle on whatever it is before it progresses any further.

In the meantime - stay absolutely gluten-free (CF too is a good idea). If you smoke - quit. The less alcohol the better. If I can be of any help - PM me. Claire

[PicturePerfect]

So can MS be caused by Celiac?

[Claire]

So can MS be caused by Celiac?

My unlicenced opinion is 'no' . However people with an autoimmune disease never seem to have just one.

The compromised intestinal wall admits all manner of things to the blood stream where the immune system sees 'invader'. Read up on 'mimicry' - this is how the immune system identifies something that shouldn't be there and attacks. Unfortunately the attack doesn't stop there. The immune system sees body cells whose structure 'mimics' that of the 'invader' and attacks these as well. It may the joints and the person gets RA or its the brain where any number of disorders can result - including MS. That, as far as I know, is the degree to which celiac could 'cause' MS. It just makes MS and a lot of other things all to likely to happen.

Not very scientific - hope this hepls. Claire

[LAUSTIN]

I WAS DIAGNOSED WITH celiac disease IN 2002. I WAS SEEING A NEUROLOGIST ABOUT ATAXIA, TREMORS, RESTLESS LEG, WHEN HE SUSPECTED celiac disease, SENT ME TO A GASTROLOGIST AND celiac disease WAS CONFIRMED. GASTROLOGIST ALSO FOUND THROAT CANCER AT THE SAME TIME. MY GASTROLOGIST KNEW VERY LITTLE ABOUT CELIAC. TOLD ME WHAT FOODS TO "AVOID".. DURING MY RAD TREATMENT I BECAME EXTREMELY WEAK AND WHEELCHAIR BOUND. FEELING BETTER, I DID RESEARCH AND WITH THE HELP OF A DIETICIAN I STARTED A gluten-free DIET IN 2002. I AM STILL UNABLED TO WALK WITHOUT ASSISTANCE. QUESTION, SHOULDN'T I BE AT LEAST ABLE TO WALK OR HOLD A PEN BY NOW? ALSO, I HAD A BENIGN BRAIN TUMOR REMOVED A YEAR AGO. ALSO, I EVACUATED DURING HURRICANE KATRINA AND I'M SURE I MUST HAVE EATEN SOME FOOD WITH GLUTEN IN IT DURING THAT TIME.

[Jnkmnky]

My unlicenced opinion is 'no' . However people with an autoimmune disease never seem to have just one.

The compromised intestinal wall admits all manner of things to the blood stream where the immune system sees 'invader'. Read up on 'mimicry' - this is how the immune system identifies something that shouldn't be there and attacks. Unfortunately the attack doesn't stop there. The immune system sees body cells whose structure 'mimics' that of the 'invader' and attacks these as well. It may the joints and the person gets RA or its the brain where any number of disorders can result - including MS. That, as far as I know, is the degree to which celiac could 'cause' MS. It just makes MS and a lot of other things all to likely to happen.

Not very scientific - hope this hepls. Claire

I think it can be. Keeping your body inflamed has to let other stuff slip through the gut wall. Your body finds some protein combo that slipped through and identifies it as an invader and triggers another auto immune response that can't be shut down.

[jerseyangel]

Yes--thats the way I understand it, the leaky gut lets particles of undigested food into the bloodstream where they can set the stage for other autoimmune types of responses. I seem to read over and over how unchecked Celiac can lead to other autoimmune diseases. Scary--just this week, I learned from my mom that 2 women in my family have MS. One is 40ish and newly DX, the other is older but has had it for some time and didn't want anyone to know (!). Both are in my mom's family. My mom has antiphospolipid syndrome which is also autoimmune. Now me w/Celiac.

[Claire]

As jerseyangel says 'scary'. It doesn't have to be celiac. Any one autoimmune disease seems to encourage yet another. 'Mimicry' is the name of the game it seems. Claire

[PicturePerfect]

As jerseyangel says 'scary'. It doesn't have to be celiac. Any one autoimmune disease seems to encourage yet another. 'Mimicry' is the name of the game it seems. Claire

Hmm. I agree with what you both are saying. But, my mom found out that being gluten-free can help the symptoms of MS die down. Is this possible? That is why I was asking about Celiac causing MS.

Thanks,

Lisa

[Nantzie]

I've been thinking a lot about this because I have a lot more neuro symptoms than I do digestive symptoms. I also have a first cousin with MS.

When I did my genetics testing, I found out that I don't have the main celiac genes that they look for, but I do have DQ1 subtype 0602. Enterolab says that this gene is one of the ones that causes gluten sensitivity rather than celiac. When I web-researched the 0602 gene, I found that they are investigating the possible connection between 0602 and MS. And if you look at people on this board who have DQ1 with one of the 06** subtypes (haven't looked at the other DQ1 subtypes), they tend to have more neuro symptoms than someone with one of the main celiac genes. From what I've read of their posts, they seem to have great success and often dramatic reduction in their symptoms by going gluten-free. There are also a few people on this board with gluten ataxia, some of whom are using crutches or wheelchairs. But it seems like all of them started out with less severe symptoms which worsened over the months or years. It wasn't like they were fine one day, and then all of a sudden needed a walker. It was a progression; sometimes slow, and sometimes rapid.

Then, investigating it from a different angle and looking from the MS community's angle and whether a gluten-free diet helps people with MS, their studies show that it really doesn't, and that they say there seems to be the same percentage of people with MS who have gluten sensitivity as people in the general public with gluten sensitivity. So they think that MS and gluten sensitivity aren't related.

But, you can't deny that some people who have been diagnosed with MS have improvement, sometimes dramatic, from going gluten free. You also can't deny that for some people with MS, it doesn't help at all.

I've also read somewhere that on MRI, gluten-related cerebellar damage looks A LOT like the damage that would be seen on MRI with MS. They also said that there was some difference, but unless you know what to look for as far as the difference, it all looks like MS.

So, all that being said, it makes me think that maybe there are really two different disease processes here; gluten sensitivity that presents neurologically OR multiple sclerosis.

I think that maybe what is going on is that neurological gluten sensitivity will respond to a gluten free diet, and MS won't. But then, maybe the people with MS who tried a gluten free diet and didn't see any improvement weren't being as gluten free as they needed to be and weren't looking for hidden gluten or cross-contamination and were inadvertantly glutening themselves without knowing it.

So until they figure all this out, I'd say to anyone who has MS to try the real, hard-core, gluten free diet just to see if it helps.

Nancy

[Claire]

I've been thinking a lot about this because I have a lot more neuro symptoms than I do digestive symptoms. I also have a first cousin with MS.

When I did my genetics testing, I found out that I don't have the main celiac genes that they look for, but I do have DQ1 subtype 0602. Enterolab says that this gene is one of the ones that causes gluten sensitivity rather than celiac. When I web-researched the 0602 gene, I found that they are investigating the possible connection between 0602 and MS. And if you look at people on this board who have DQ1 with one of the 06** subtypes (haven't looked at the other DQ1 subtypes), they tend to have more neuro symptoms than someone with one of the main celiac genes. From what I've read of their posts, they seem to have great success and often dramatic reduction in their symptoms by going gluten-free. There are also a few people on this board with gluten ataxia, some of whom are using crutches or wheelchairs. But it seems like all of them started out with less severe symptoms which worsened over the months or years. It wasn't like they were fine one day, and then all of a sudden needed a walker. It was a progression; sometimes slow, and sometimes rapid.

Then, investigating it from a different angle and looking from the MS community's angle and whether a gluten-free diet helps people with MS, their studies show that it really doesn't, and that they say there seems to be the same percentage of people with MS who have gluten sensitivity as people in the general public with gluten sensitivity. So they think that MS and gluten sensitivity aren't related.

But, you can't deny that some people who have been diagnosed with MS have improvement, sometimes dramatic, from going gluten free. You also can't deny that for some people with MS, it doesn't help at all.

I've also read somewhere that on MRI, gluten-related cerebellar damage looks A LOT like the damage that would be seen on MRI with MS. They also said that there was some difference, but unless you know what to look for as far as the difference, it all looks like MS.

So, all that being said, it makes me think that maybe there are really two different disease processes here; gluten sensitivity that presents neurologically OR multiple sclerosis.

I think that maybe what is going on is that neurological gluten sensitivity will respond to a gluten free diet, and MS won't. But then, maybe the people with MS who tried a gluten free diet and didn't see any improvement weren't being as gluten free as they needed to be and weren't looking for hidden gluten or cross-contamination and were inadvertantly glutening themselves without knowing it.

So until they figure all this out, I'd say to anyone who has MS to try the real, hard-core, gluten free diet just to see if it helps.

Nancy

While you may have good reason to suspect MS be sure not to jump to conclusions. MS is frequently even misdiagnosed by doctors - i.e. something is called MS that really is not.

Genetically determined gluten sensitiveity predisposes you to neurological disorders that indeed look a good deal like MS. At least they didn't tell me I have MS. I am one of the members here who has an ataxia - cause as yet unconfirmed. I do not have celiac disease. I don't know if I have the gene for genetic gluten sensitivity - that also is yet to be determined.

You are right about the MRI. Mine looks somewhat like MS - yet the distribution of damage is much more confined. I would not think any experienced neurologist would mistake it for MS. A careless doctor might.

Certainly there are two distinct issues - gluten sensitivity is one thing, MS is quite another. They share some common neurological symptoms - but there are other diseases also that produce some of the same symptoms. Symptoms alone are not sufficient to define a neurological disease.

My own condition has taken me by quite a few neurologists - some of these research doctors at NIH. I feel that these are more conciencious than the average home grown neurologist. Research is their business and they have an interest in what they study - unfortunately they are probably more interested in what they study than they are in who they study.

I was told at NIH and by a consultant neurologist at Geroge Washington University Hospital that gluten is just not good for people with neurological conditions - whether or not they are celiac disease, GS. Some scientists consider gluten to be a neuro toxin - if you will, an irritant to the brain (as well as being an opioid). That one consultant suggests gluten-free to all his patients with neuro disorders. He told me there is a significant improvement in most MS patients - especially if they get an early diagnosis and go gluten-free early on. No, they don't recover.

They improve and the progress of the disease seems to be retarded. That is a small victory - but nevertheless a victory.

Many with MS, celiac disease. GS or whatever don''t give gluten free a fair chance. They are looking for immediate, dramatic results when the results may be gradual and verifiable only over time. Claire

[Jnkmnky]

The current suggestion is that patients dxd with MS should be screened for Celiac. There is an awareness that the two are linked...as are all AI Diseases, imo.

[Dixie Gal]

This is an interesting string with a lot of good info in it. Diagnosed with MS in 1996 after years of MD's with only pharmaceuticals to offer to cover symptoms, I found a DO (Dr. of Osteopathy - like MD with more microbiology) who follows the gluten link. I was doing research and asking questions, but got continual responses from MD's ranging from pooh-pooh to anger. Now the diet and other protocols are giving me relief from dead hands, legs, tremors, vision & balance problems, fatigue, deadly GI problems, brain fog, etc. Undiagnosed until recently as autoimmunity byproducts from gluten, I have lost both salivary glands and my thyroid gland.

My belief now is that antibiotics (especially given to children) and birth control followed by long term yeast infections from killing off good flora in the gut makes it permeable (the yeast develop tails that bore holes in the gut wall, allowing molecules to enter bloodstream and trigger autoimmunity of all kinds). If we can conquer the yeast, replace good flora using high levels of probiotics, eliminate gluten & sugar we can then raise nutritional levels with improved absorption so our bodies can repair. Good multis, vit C, the B's, etc. help boost. Also Vit D3 shortage is a critical factor and has been shown in studies as a factor.

It's a complex issue and there is lots of good info out there. Hope this helps! and thanks for your info...

Also, I have mixed feelings about seeking a confirmation of diagnosis for MS before trying dietary changes and supplements. If symptoms are mild, it's important to consider the effect on employment, family relationships, insurability, etc. You don't have to tell the world, but for insurance forms and employment applications for a new job, you are obligated.

[Becky6]

That sounds a lot like me! I have had symptoms for 10 years at least with muscle weakness and joint pain. Gosh even 18 years ago I remember my legs and hips just killing me! I always am tired and feel icky most of the time. I was tested for Lymes and LUpus and dx'd 8 years ago with fibromyalgia but it really didn't fit. I also had a lot of stomach discomfort, and gas. Every year new things come up. Numbness in hands, then feet, then face, then finger tips then my ear. Keeps getting worse and worse. Now my hair is falling out! I had several mri's over the last year and they found the start of possible leisons and I have optic neuritis. However, the spinal tap was neg and htey have not dx'd me. They think it is ms but they are not sure. No one ever menitoned celiac! I was diagnosed 7 years ago with microscopic colitis. I started researching celiac last weekend thinking my daughter has it. Then the further I looked into I felt that i was reading about me! I saw last night that celiacs can have non ms related leisions in the brain! So I am hoping that is my case! I now realize that many people in my family may have/had celiac. So I am getting blood tests on wed. And regardless of the results will go gluten-free! My daughter has been gluten-free for a week and we are already seeing a bit of improvement!

[Claire]

T

Also, I have mixed feelings about seeking a confirmation of diagnosis for MS before trying dietary changes and supplements. If symptoms are mild, it's important to consider the effect on employment, family relationships, insurability, etc. You don't have to tell the world, but for insurance forms and employment applications for a new job, you are obligated.

Regarding the above paragraph: one reason for early diagnosis is that the earlier you catch the disease the sooner the individual can begin to work toward their own health - if so inclinded. You are already doing that but many are not and, of course, many when diagnosed will give in to the meds and the more or less futile attitude toward this disease.

Right on about insurance forms etc. With all the data mining going on you can't afford to have an 'expensive' disease show up on the records. Also family members can be denied insurance coverage if an aggressive insurnace company has turned up your records.

I am currently being evaluated at NIH for a dominant genetic disorder (doesn't skip generation}. NIH evalations and test results don't show up on medical records. Of course there is no such thing as total privacy but a lot is better than none so I am glad to have the NIH opportunity. Claire

[Dixie Gal]

Hi, Becky! There's so much to cover - optic neuritis was my first indication MS was coming, they say. I also had all the options tested - lupus fibromyaliga, epstein barr, etc. My falling hair was thyroid and progesterone and I think some celiac. The numbness should clear with time. I don't know about MRI's - I was about ready for a wheelchair but MRI didn't show much change. Better now after dietary changes. Colitis is fancy word for "colon infection" part of gluten/yeast, I think. Good luck! Kathy

[PicturePerfect]

Wow! A lot of good information.

Okay, so from what I understand, you could have both MS and Celiac Disease and being gluten-free may/may not help symptoms. Am I right?

I know this is a weird question, but does auto-immune diseases run in family genes? I know that I got Celiac Disease from my mom's side of the family, because my cousin on her side has Celiac. My mom is the one who has MS. Is it possible that my mom's genes carry an auto-immune disease (MS), and that I just got another kind (Celiac)?

Also, my mom says that the worst that can happen to her having MS is being in a wheelchair. Is that true?

Thanks for all the help,

Lisa