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Jacky

Celiac And Now Ms

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I started to limp with my right leg almost 5 years ago. The doctors found a problem with my pelvis and fixed it, but the limping never went away. Then 14 months ago, the diarrhea started. Then I had the rash, and then mouth sores. I am not biopsy proven, but the blood work was suggestive of celiac. Over the last year, beginning late March, I gave up gluten, then dairy and finally in early March this year, soy. The good news is in this last month, the diarrhea has finally stopped! I can do what I want and don't have the churning tender gut side lining me.

But last fall I realized that my right hand was weak. I don't have the dexterity or strength that I should have. I went to a neurolgist and now after MRI (white matter lesions), spinal tap (elevated IgG index), I am going to this doc 4/11, my birthday :( to get the final diagnosis. I've done enough googling to find out that I am classic MS. I've read there is a link between celiac disease and other autoimmune diseases, but I never figured I'd be one of them.

I've been living a nightmare and seeing my whole world, my life, my future, everything fall apart. I cry off and on all day and I guess I just need to tell all of you. I'm having such a hard time accepting it. I worry about my wonderful husband and my poor daughters. I just don't know how I'm going to get through this.

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I am so sorry to hear this! I have a cousin with MS so I know it's a hard diagnoses to deal with. Especially on your birthday. The good news is that doctors have a lot more options for treatment these days. I know it's hard but try to stay positive and reach out for support when you need it!

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I started to limp with my right leg almost 5 years ago. The doctors found a problem with my pelvis and fixed it, but the limping never went away. Then 14 months ago, the diarrhea started. Then I had the rash, and then mouth sores. I am not biopsy proven, but the blood work was suggestive of celiac. Over the last year, beginning late March, I gave up gluten, then dairy and finally in early March this year, soy. The good news is in this last month, the diarrhea has finally stopped! I can do what I want and don't have the churning tender gut side lining me.

But last fall I realized that my right hand was weak. I don't have the dexterity or strength that I should have. I went to a neurolgist and now after MRI (white matter lesions), spinal tap (elevated IgG index), I am going to this doc 4/11, my birthday :( to get the final diagnosis. I've done enough googling to find out that I am classic MS. I've read there is a link between celiac disease and other autoimmune diseases, but I never figured I'd be one of them.

I've been living a nightmare and seeing my whole world, my life, my future, everything fall apart. I cry off and on all day and I guess I just need to tell all of you. I'm having such a hard time accepting it. I worry about my wonderful husband and my poor daughters. I just don't know how I'm going to get through this.

Welcome to the forum! In these pages you will likely receive much good advice and support. It is nice to hear too that you have a wonderful husband and two daughters.

I just wanted to tell you that there are many here (myself included) that have had MS like neurological symptoms (as well as out and out MS) that have had their symptoms go away or at least significantly reduce by being on a gluten free diet. In my case (as in many) I had to be completely free of cross contamination (CC) from gluten to notice the difference. But notice I did and still do!

It also has helped me immensely to take co-enzyme B vitamins. B vitamins are essential for neurological health. However with celiac (especially in the early days before you have healed your villi) one often can't absorb many vitamins and minerals very well at all. The co-enzyme B's go directly into the blood stream and for me at least did and do wonders. I still need to take them to get a good nights sleep and not have achey joints during the day.

In addition I take minerals--liquid sea minerals, silicon drops, and calcium aspartate anhydrous (i.e., E-zorb--a much more bio available form of calcium--a little expensive but I get it in the powdered form and the effects for me are essential since nerves need calcium too and I don't do well absorbing other forms of it. I find E-zorb online). Fish oil that has vitamin A and D and some vitamin E is also a good idea.

In order to heal the villi, I take fibronylitic enzymes. They basically take down inflammation and reduce scar tissue. My favorite is nattokinase--which like the co-enzyme B's are best taken on an empty stomach (I take them together).

Initially I suggest you make all your own food from scratch rather than get mixes or pre-prepared food for the most part. Food you put together yourself is far less expensive not to speak of it being far healthier. Eating whole grain brown rice, meat and vegetables will get you started on the healing path.

You may discover you have other food sensitivities than just the gluten and soy that you need to avoid. Milk is the most common especially at first. I still avoid milk products except for organic plain yogurt which I usually make myself.

If you continue to have problems, you may need to be a bit of a detective to figure out what other sensitivities you might have. For myself I recently discovered for instance that I am salicylic acid (SA) sensitive. A bit of a bother since SA is in so many things, but well worth feeling so much better since SA sensitivity can also create havoc with the nervous system.

Going to a gluten free support group (or creating your own) can also help. You may discover others like you with neurological problems. Fibromyalgia and arthritis are other similar symptoms many have that often go away or are significantly reduced--especially if you cut out the sugar and empty bleached starches and various colorants and additives.

Good luck, and welcome!

Bea

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Welcome to the forum! In these pages you will likely receive much good advice and support. It is nice to hear too that you have a wonderful husband and two daughters.

I just wanted to tell you that there are many here (myself included) that have had MS like neurological symptoms (as well as out and out MS) that have had their symptoms go away or at least significantly reduce by being on a gluten free diet. In my case (as in many) I had to be completely free of cross contamination (CC) from gluten to notice the difference. But notice I did and still do!

It also has helped me immensely to take co-enzyme B vitamins. B vitamins are essential for neurological health. However with celiac (especially in the early days before you have healed your villi) one often can't absorb many vitamins and minerals very well at all. The co-enzyme B's go directly into the blood stream and for me at least did and do wonders. I still need to take them to get a good nights sleep and not have achey joints during the day.

In addition I take minerals--liquid sea minerals, silicon drops, and calcium aspartate anhydrous (i.e., E-zorb--a much more bio available form of calcium--a little expensive but I get it in the powdered form and the effects for me are essential since nerves need calcium too and I don't do well absorbing other forms of it. I find E-zorb online). Fish oil that has vitamin A and D and some vitamin E is also a good idea.

In order to heal the villi, I take fibronylitic enzymes. They basically take down inflammation and reduce scar tissue. My favorite is nattokinase--which like the co-enzyme B's are best taken on an empty stomach (I take them together).

Initially I suggest you make all your own food from scratch rather than get mixes or pre-prepared food for the most part. Food you put together yourself is far less expensive not to speak of it being far healthier. Eating whole grain brown rice, meat and vegetables will get you started on the healing path.

You may discover you have other food sensitivities than just the gluten and soy that you need to avoid. Milk is the most common especially at first. I still avoid milk products except for organic plain yogurt which I usually make myself.

If you continue to have problems, you may need to be a bit of a detective to figure out what other sensitivities you might have. For myself I recently discovered for instance that I am salicylic acid (SA) sensitive. A bit of a bother since SA is in so many things, but well worth feeling so much better since SA sensitivity can also create havoc with the nervous system.

Going to a gluten free support group (or creating your own) can also help. You may discover others like you with neurological problems. Fibromyalgia and arthritis are other similar symptoms many have that often go away or are significantly reduced--especially if you cut out the sugar and empty bleached starches and various colorants and additives.

Good luck, and welcome!

Bea

Bea, they found 10 lesions in the brain white matter and 2 on the spinal cord. My IgG index is .90, .85 and over is considered positive. I read that these 2 things are enough to confirm an MS diagnosis.

I'm getting a second opinion of the lab results and may go to Cleveland Clinic. I'm told that is the best MS clinic.

I've also got an appointment with Dr. Fasano at U of MD in May.

I'm trying to be positive, but it is really difficult.

I did cut out dairy and I am cooking more and more food from scratch. I do eat Chex cereals and some of the baking mixes: King Arthur and Udi's products. Otherwise everything is from scratch. I've read bits and pieces about celiac neuropathy but haven't seen whether that problem also displays the white matter lesions and the elevated IgG index. I'm so afraid to grab at straws and have false hope. This emotional roller coaster is something I can hardly bear. I'd rather know the truth no matter how horrible and begin to deal with it. This not knowing is the worst.

I am so very lucky to have a husband that loves me as much as mine does, but it is almost harder to see him suffer than to think of my own problems. We were/are planning on retiring this early summer and we feel like our future has been taken away from us.

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hi jacky-

1st off- i really know next to nothing about MS.. so please take me with a grain of salt- and i am not trying to give false hope... and yes of course you could have both..

but- *and if someone knows more about this please chime in... BUT- i THINK ive read that SOME people with Celiac and Ms/like symptoms DO get lesions on the brain, but in different areas.

??????

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I am sorry, I am no expert either, I am afraid, you need Ravenwoodglass to talk to you, but my understanding is that with neurological symptoms of celiac they often find what are called UBO's (unidentified bright objects) on the brain. It is my understanding that they have a different appearance from MS lesions. These lesions cause symptoms similar to those of MS. I know no more than that. Dr. Fasano is one of the gods of celiac and I am glad you have an appointment scheduled with him. I have no idea of the significance of the IgG index score.

I would not give up hope yet that it is not related to celiac. :) I wish you a positive outcome from your further appointments. {{{{hugs}}}}

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I had brain lesions. I also had a neuro who refused to admit that this is a celiac symptom - I know docs loathe "googling" patients but .....

At least I don't use a cane anymore and can feel my hands and feet, about 8 years into this gluten free routine. I also had some pretty weird visual disturbances, and those are mostly gone, except when I'm tired or glutened my eyes still tend not to track together. I had pretty bad ataxia sometimes. I limped on and off for years and was dragging a foot sometimes, nothing really obvious other than having to really concentrate to walk normally, especially on uneven surfaces.

That was part of how I self diagnosed as gluten intolerant after getting such a run around. I had many MS symptoms, had a lot of doctors before that tell me it was "probably" MS, (spinal tap was negative, tho) but I could tell the symptoms were waxing and waning on what I was eating. There was also a blog around at the time written by a person with MS, alas I can't find it anymore, which lined out the symptoms and diagnosing better than anything I have seen since, and which talked about how some MS seemed to respond to a no grain, what is now called a SCD or paleo type diet, inspite of the regular medical profession saying it was not so. Even "leaky gut" theory was controversial at the time.

Please do stick to a gluten free diet and see how far it can take you. I have met another person who's gone thru the same thing, and so there are at least two of us out there besides Bea.

I taught myself to be nearly ambidexterous to compensate. I can saddle a horse left handed from the wrong side and get on and off from it, (and teach the horse this is okay) and I re - taught myself to ski using one leg and my abdominal muscles, and just letting the other come along and not get in the way, altho the first few times I was starting down the hill and tried to turn right instead of left.... it was interesting. B) The stronger you make your core muscles, the better you can fake it. At the time I was really getting physically squirrelly, I was reading on a horse chat board and they had several people with MS who were riding anyway, and just saying, basically, to **** with it and move on, which is a good attitude anyway as long as you don't do stupid stuff on bad days.

I am slowing down because of aging anyway, and one thing I've learned is to live in the moment now, and not obsess about what's coming up in the future. If my husband and I want to do something, we do it, we don't wait until "someday." Life's too short, anyway.

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You've gotten great advice.

I'm no psychologist, and please don't take this wrongly, but I get the impression that you feel as though getting a diagnosis of MS would take all hope away. As if there's no use fighting it, like you may as well sit back and let it all happen, and not bother trying to overcome it just because doctors say you can't.

Many of us on this board can tell you that doctors are so often clueless about things, that we can't barely believe their ignorance. The association between Celiac and innumerable, supposedly unrelated symptoms is one example with which many here are all too familiar. Yes, neurological symptoms which appear much like signs of other diseases are definitely associated with Celiac. And many on this board have experienced significant improvement in things which the medical profession regards as untreatable and/or permanent.

Even after going gluten-free, my health continued to deteriorate. I eventually could not walk, could barely hold small, light objects without them slipping right through my fingers, and the nerve/muscle pains kept getting worse. I credit this board and the fine members here with helping me turn things around. I eventually concluded that I had very serious nutritional deficiencies, even though I have always cooked practically everything from scratch and enjoy loads of veggies and other wholesome, nutritious foods.

What has made the largest difference for me (besides going gluten-free) is vitamins and minerals such as those already mentioned by Bea. The B vitamins are IMHO a must, and magnesium was the big missing puzzle piece for me. Vitamin B12 was also an important factor. However, other food sensitivities must never be overlooked. For example, I would also figure out that nightshades (potatoes, tomatoes, peppers, eggplant, etc) would literally cripple me. It would take two weeks of abstaining from them before I could walk again. Therefore, I always recommend trying these things to anyone with nerve/muscle/neuro type issues. It can't hurt, and could really help.

I don't have specific knowledge about MS, brain lesions, and so forth. But what is so very clear to me is that the body requires nutrients in order to repair and maintain itself. Without the right nutrients, and/or when toxins get in the way of proper functioning, any number of things can go wrong. I would urge you to try some nutritional supplements, regardless of what blood tests or doctors might say.

And I'd also agree that other food intolerances/allergies or sensitivities may be an important factor for you. It can take awhile to track them all down, but it is worth every effort to figure them out. Many of us have found new culprit foods after going gluten-free.

Things might seem bleak, and this might sound too optimistic, but be the strength your family needs. Show them you aren't going to take this all lying down. Grasp every single shred of hope, and use the Internet as the incredible resource it can be for you. I'd personally bet money on you being able to improve your health significantly more than doctors think you can. Please don't prove them right by giving up.

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I do have the small bright spots that ARE associated with Celiac. It was spotted in a MRI after I had meningitus.

I know two poeple with MS. One is just taking medication. The other was having problems with insurance covering the drugs. We were talking and I had showed her some research studies about the gluten free diet "helping" positive response for MS. She was in such a situation, not being able to get the medication, she started the gluten free diet. She was having such a positive response she has taken her diet to all organic and I believe she also avoids sugar too. (She does NOT use artificial sweeteners!)

I saw he a year ago and she looks like a new person, at least 10 years younger. Others marvel about her miracle diet.

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yes- all great advice above!!

also- have u ever heard of Dr. J and the G.A.R.D. diet??? you really should go over to his site- and just read- alot of GREAT info and theories about gluten, dairy, corn, soy, celiac, ms, arthritis, neurological issues, mental issues, seizures, etc.

he is a veterinarian with Celiac. he's a neuro-celiac, and anyways, he's got a lot of great ideas- and it might encourage u- regardless of whether u get the MS dx or not.

http://dogtorj.com/

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I hope I'm not too late in replying.

I was diagnosed with MS ten years ago. It's such a long and complex story..but I was pretty sick for many years and had all the symptoms of MS. I was actually on one of the very expensive medications they use to treat MS. I was a big advocate for MS, all the while feeling as though that wasn't the entire story.

What you need to do is go right to Amazon and order the Swank book on MS. Swank was neurologist who believed gluten intolerance had a lot to do with MS. It's called "The Swank Diet" and some people with MS have really healed following his guidelines to a T.

I think I've come to realize that I am really probably just a celiac that never knew, as I can trace these problems to childhood. The MS type symptoms started when I was in my late 20's, but I'm wondering if it was just this wheat thing getting worse.

The first few weeks that I gave up wheat and grains I really felt like a new person, so I urge you continue on this path---no matter what your final diagnosis.

Good luck. Keep in touch...

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Hi, I am really late replying to this, sorry. I got glutened at my voluteer work last week and have written many replies this week and deleted most of them without posting.

I also had brain lesions but my doctor told me "lots of people have them and they are meaningless" after doing a spinal tap and not finding the ususal results for MS in the fluid.

Before that I was thought to have MS for quite a long time. Could those lesions be MS lesions, well yes but that does not mean you will be severely disabled from it. For many MS will be a relapsing disorder where symptoms can be bad at some points and then disappear for a time before coming back. Many live long and productive lives with MS.

It is also quite possible the lesions are UBOs, those lesions look very much like the lesions they find in MS so it can be hard for a doctor to tell that is what they are and MS is a misdiagnosis for many of us. If they are UBOs you have a good chance that your symptoms will resolve in time gluten free. I did find I had to be very, very strict with the diet and react to even small amounts of gluten. I avoid it even in distilled gluten grains because they will cause the same symptoms for me that a slice of bread would.

Hopefully your issues will resolve on the diet but it may take some time for the nervous system to heal. I saw great results after about 6 months at which point I was able to stick my canes in the closet only bringing them out with a severe glutening.

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