Multiple Sclerosis And Celiac

[sillyyak]

I was recently told that I may have MS and that there is a correlation between celiac and MS (but it has not been proven). I wanted to know if anyone here has both? I heard that a gluten free diet can also improve symptoms of MS. Just curious. I go for my neuro test this Thursday.

[rinne]

I'm sorry to hear that you are having to deal with another health issue, Celiac is enough.

I have Celiac and Lyme and MS is often a misdiagnosis for Lyme.

The problem with this is that MS is treated with steroids and steroids can drive the Lyme deeper into the body and make it harder to eradicate it.

By the way, about thirty years ago I was told that I might have MS.

I hope you get some answers soon.

[CarlaB]

I have to agree with Rinne, I would DEFINATELY rule out Lyme Disease before going on steriods for MS. Unfortunately there is a battle within the medical establishment about Lyme and those of us with it are the ones paying the price. You can see more about it here: Open Original Shared Link

If you get tested, use Open Original Shared Link. I ordered the test kit and took it to my doctor. Other labs leave out critical bands.

[happygirl]

A family member of mine has MS and has found her symptoms are greatly helped/controlled etc with diet changes, including a low gluten/low dairy/low fat diet. She doesn't have Celiac, but the diet helps her.

In general, autoimmune diseases are linked...if you have one, you have an increased risk of another, etc.

[georgie]

Sorry to hear about your MS diagnosis. I have Celiac and Pernicious Anaemia . I urge you to read all you can about low B12 as the symptoms of that can mimic MS - even to the white lesions that show on MRIs. Sally Pacholok RN BSN has written an excellent book 'Could it be B12' which talks of the difficulty in getting low B12 correctly diagnosed and treated. Also a good Forum and a web site coming soon I believe.

Open Original Shared Link

[Guest lizajane]

I am so sorry that they might think you have MS! The two diseases are right beside each other in the DNA scale, so they might be linked--still studying that. Most MS people do suffer some of our food allergies and feel much better when eating gluten free diets!! I do hope your tests turn out negative! I have a cousin and 2 sisters with MS and they fight daily with their disease like we do!!

[mamaw]

I don't claim to know much about MS but I just met a woman in her40's with rapidly ongoing MS. She told me she was in a study with a large hospial. Taking steroids , & many new drugs to slow down her MS....At the end of her story she told me the doctors that tend to this trial & error group told her she probably would live another 20 years with this protocal. The doctors gave all of the patients a choice to go on two diets, one being the diet for celiacs. She couldn't remember the other one.....

She said the MS has fried 3/4's of her brain power. She can remember things that she learned as a child but cannot retain any info more than 20 min that is new to her. Ie: a new diet. She has asked me if I would bake for her as she get into the middle of a recipe & totally gets lost....

I hate steroids but she says she has to have them to stay alive.... I truly feel bad for her so I agreed to give her things when I bake....

P;ease join me in praying for Joanne.

blessings

mamaw

[Amy Rae]

Yes. You are not alone. I was diagnosed with MS in 1999 and I just learned that I am also gluten intollerant. My doctor believes that my MS symptoms may greatly improve if I go on a gluten free diet. In fact, I am believing that I was misdiagnosed. I will have another MRI in 18 months and then I will know for certain! I strongly recommend you continue your gluten free diet. What type of symptons are you having that they diagnosed you with MS?

[NicoleAJ]

I'm sorry to hear about the potential diagnosis, but I urge you not to worry too much about it until you have the tests conducted.

Last summer I had what appeared to all my doctors to be an episode of relapsing MS. I even had some tests come back abnormal, which helped to confirm this diagnosis. Later, other tests came back normal, and they weren't sure what to make of it. I had been on the gluten free diet for over two years at that point, so it appeared to be unrelated to celiac. Ultimately, it turned out that I had pernicious anemia, like Georgie mentioned, and after having the B12 shots, I started feeling much better. In addition, I had developed a garlic and onion allergy that caused much of the joint pain and other issues I was having, and trigeminal neuralgia was the culprit for the blinding pain I was having along the trigeminal nerve. I've recovered (with the exception of occult bleeding), and the doctors ruled out MS completely. I really feel as though I spent several months feeling terrible physically, but the pressure of believing that I had MS did not help my emotional state either. This is why I suggest you hope for the best--MS is frequently misdiagnosed, and there's a good chance that you don't have it as well. Good luck and keep us updated on your condition.

[georgie]

After a year of weekly B12 injections my neuro symptoms are still improving. My Pernicious Anaemia was dx very late . Drs simply don't test B12 as they should. Or don't treat to symptoms. If you have neuro symptoms and test borderline low in B12, or even SUSPECT low B12 - get the Loading Dose of injections. Its simply a vitamin ...... that a deficiency of can mimic MS or leave you paralysed. And the blood test may not show this is happening - until its too late to reverse the neuro damage. Sublinguals may not work if you have neuro damage symptoms. Its important to have a B12 Loading Dose until neuro symptoms cease to improve .......then go on a maintenance dose. The Maintenance Dose is not enough if you don't first have the Loading Dose. I have heard of some that need weekly injections for two years ...to reverse the neuro damage ... I don't know if this applies to you - but its important to establish if it is - as your Dr may not understand....

[lorka150]

Three members of my immediate family have MS - I've been tested many times, and the most recent MRIs and Evoked Potentials tests ruled it out once more, and I've been diagnosed with Peripheral Neuropathy due to celiac disease.

If you have specific questions, please let me know.

One of the members (my mom) is doing gluten and casein free, but hasn't noticed a difference (she has had MS for 30 years, and been gluten-free/cf for 2 years).

There is correlation between autoimmune diseases, but not direct correlation.

It is not uncommon, though, to have one or two. Everyone on my mom's side has 1, 2 or 3 autoimmune diseases.

I hope they find answers for you.

[Lolabell]

My Aunt has MS. For years she has dealt with bowel issues, and was told it's just part of her disease. It started out as chronic constipation at first, and over the years turned to chronic diarrhea. As her disease progressed, she had a very hard time making it to the toilet in time and had many very embarrassing accidents. A few years ago I read an article about MS and the person writing it talked about how his bowel symptoms improved greatly when he avoided Gluten and casein. I told her about it, and she thought...What the heck, I'll try it for a month. To make a long story short, she is now regular, and if she does slip, her diarrhea comes back with a vengeance. Anywho...autoimmune dysfunctions do seem to run in packs...

I wish you all the best. Hang in there.