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NicoleAJ

Multiple Sclerosis

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On Tuesday I'm going in for an MRI and mid-September I'm going in for evoked potential tests because the neurologist seems to believe that there's a possibility that I have multiple sclerosis. From what I've learned thus far, this also seems to be an autoimmune disorder, and I was wondering if anyone had ever been tested for this before and found out that it was something else or if there is a link between MS and celiac. I'm just hoping that something simple accounts for my recent symptoms, such as numbness in the tongue, blurred vision, migraine, pain in the cervical and thoracic spine, and fatigue, among others. This has only been a development of the last 7 weeks, so I'm hoping that it was just a virus gone bad and that it will clear up soon. My neurologist does not diagnose fibromyalgia, and I'm happy for that because I really think that there must be an explanation for all of this.


Diagnosed July 2004

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There is a well known connection between celiac disease and neurological problems, though not specifically MS that I know of. The connection is linked to poor vitamin and mineral absorption, esp. some of the B vitamins, that Celiacs experience. I hope it turns out to be something less serious than MS. Keep us posted.

Steve

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Guest Doll
There is a well known connection between celiac disease and neurological problems, though not specifically MS that I know of. The connection is linked to poor vitamin and mineral absorption, esp. some of the B vitamins, that Celiacs experience. I hope it turns out to be something less serious than MS. Keep us posted.

Steve

All autoimmune diseases share a common genetic link or genetic overlap. That includes MS and Celiac. People with these diseases tend to let in whole proteins like gluten through a "leaky gut", which triggers an autoimmune response. Although the secondary trigger for Celiac is gluten, no one yet knows the trigger for MS. I say secondary because we do not know the initial trigger (a virus, bacteria, etc.) that causes Celiac in genetically susceptible people in the first place.

I will assume you have been following the gluten-free diet.

Have you been tested for routine viruses? Epstein Barr (mono) etc? Some people with Celiac develop Pernicious Anemia, which is a B12 deficiency caused by the autoimmune destruction of Intrinsic Factor, which absorbs B12 in the gut. These people must take injections of B12 because they cannot absorb it through diet. I am assuming you have had full bloodwork panels at this point. Most people with PA tend to have a burning tongue as opposed to numb, though, so I doubt it is that. Checking for high levels of mercury, etc. may also be an option depending on what you have been exposed to.

I am so sorry to hear that MS may be a possibility. It is a scary dx for people. BUT, let's not assume the worst just yet, until everything else is excluded. The good news is there are many good treatments available, and most people have relapse-remitting MS, which means you will have periods with remission. Usually damage does not progress during these periods (or not much), and in some cases it reverses.

Primary progressive MS is quite rare. These are the people that are severely disabled and who do not experience remission. Less than 10% of cases are PPMS.

Please try not to worry right now, you need to focus on taking care of yourself! Let the Dr. worry about you! That's what they get paid to do!

If there is anything I can do or questions I can (maybe) answer, please let me know!

My prayers are with you.

I forgot to ask if you have been exposed to or tested for meningitis?

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Primary progressive MS is quite rare. These are the people that are severely disabled and who do not experience remission. Less than 10% of cases are PPMS.

Roughly 30 years after being diagnosed with Relapsing Remitting, most cases morph into progressive MS. Doll is right, mentioning the link of all autoimmune diseases, and a few people on this board do have MS.

Three of my family members have MS, and everyone is my family has an autoimmune disease. I do not have MS (haha, yet), however, many of my symptoms mimic MS - something I am very familiar with, as it's been a part of my life since the day I was born.

Make sure you get tested by an adequate neurologists - a LOT of them are quacks and many cases of MS go misdiagnosed. Good luck.


Gluten-free, Vegan

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A MRI was the link that I needed to finally get my diagnosis. I had optic neuritis and my eye dr was concerened. They ended up finding demylinization in my brain and thought it to be MS. I had a spinal tap and a visual evoked response test and found it not to be MS but related to the celiac. When the bowels don't work right the toxins have no way of escaping and reak havoc on the system. That is why people with Colitis have blurred vision. (I have this problem). Don't let them jump the gun. Make sure they are covering all of the avenues to ensure a proper diagnosis. Good Luck! :)

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Someone posted something about someone... (what a sentence!) on the original brain talk message forum, who had wonderful success treating their MS with diet.

When it comes back online check here for it: http://brain.hastypastry.net/forums/forumdisplay.php?f=141

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I believe it was a book about the brain ( I posted somewhere ?) he said celiac's develop white matter in the brain that looks like ms. I will search it if you want.


Lee

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Guest Doll
I believe it was a book about the brain ( I posted somewhere ?) he said celiac's develop white matter in the brain that looks like ms. I will search it if you want.

This is true. This is thought to contribute to why some Celiacs have seizures or severe neurological damage. These white spots do resemble areas that can be seen in MS, strokes, etc. It is possible to have symptoms and spots from BOTH Celiac and MS.

It will take a qualified Neurologist to sort this out.

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This is true. This is thought to contribute to why some Celiacs have seizures or severe neurological damage. These white spots do resemble areas that can be seen in MS, strokes, etc. It is possible to have symptoms and spots from BOTH Celiac and MS.

It will take a qualified Neurologist to sort this out.

I found that post-It is under B-12. :)

I believe it was a book about the brain ( I posted somewhere ?) he said celiac's develop white matter in the brain that looks like ms. I will search it if you want.

Ifound that post under B-12.


Lee

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Well my gran had some kind of grain intolerance (Not 100% sure on specifics because it was the 1940s) and her sister had MS. I don't think this is a coincidence.


Gluten free since Feb 2006, Dairy and Soy free since 2009

Anemic off and on since 2003

Negative tTG Ab, IgA, Gliadin Ab IgA, wheat allergy (IgE) blood tests (Feb 2006)

Positive wheat allergy skin test(Apr 2006)and dietary response (Feb 2006)

Celiac grandmother (Dx in 1940s, "grew out of it")

Training for my first triathlon to support the Crohn's and Colitis Foundation of America.

~Amy

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Well my gran had some kind of grain intolerance (Not 100% sure on specifics because it was the 1940s) and her sister had MS. I don't think this is a coincidence.

i agree. i have celiac, my mom has ms, my sister has MS, my mom's mom has hypothyroidism and fibromyalgia, my mom's sister has hypothyroidism and MS, and my mom's brother has iritis. definitely connected.


Gluten-free, Vegan

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I'm a new computer user and also a new member to this site. But I had to reply to MS and Celiac comments, I have been looking for someone like myself for a long time. I was diagnosed first with MS 25 years ago and then diagnosed with Celiac disease 10 years after that. I'm sure I had Celiac first and didn't know it and it caused alot of the brain lesions, (although my doctor says there's no connection). I feel so frustrated sometimes trying to get my family members to be tested. I'm the only diagnosed Celiac, but theres a history of migraines, depression, schizophrenia, and retinal strokes in immediate family members. Something has to change in the medical community to get them to listen to us. I am so worried about my children and grandchildren. I read somewhere that they were going to change celiac disease from a gastrointestinal illness to a brain disease.

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Guest Doll
I'm a new computer user and also a new member to this site. But I had to reply to MS and Celiac comments, I have been looking for someone like myself for a long time. I was diagnosed first with MS 25 years ago and then diagnosed with Celiac disease 10 years after that. I'm sure I had Celiac first and didn't know it and it caused alot of the brain lesions, (although my doctor says there's no connection). I feel so frustrated sometimes trying to get my family members to be tested. I'm the only diagnosed Celiac, but theres a history of migraines, depression, schizophrenia, and retinal strokes in immediate family members. Something has to change in the medical community to get them to listen to us. I am so worried about my children and grandchildren. I read somewhere that they were going to change celiac disease from a gastrointestinal illness to a brain disease.

It is not uncommon to have BOTH Celiac and MS. The are genetically related. Your doctor is right. Brain lesions from Celiac are not the cause for MS, but they can cause MS like symptoms in someone without MS. MS is the autoimmune demyelinating of the Central Nervous System. That does not occur in those with Celiac alone.

But anyway...Welcome to the site! You will find tons of great people and information here!

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It is not uncommon to have BOTH Celiac and MS. The are genetically related.

Hi, as you probably read above, autoimmune (esp. MS) is rampant in my family. I am NOT disagreeing with you (as I am living proof), but am wondering if you have any handy documentation? I have a few, but I know that some people would be interested (IE some of my family).

Thanks!


Gluten-free, Vegan

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Here is a link for the American Autoimmune site . Very good site and easy to naviagte - talks about all the various autoimmune condions including how they can occur togther ...http://www.aarda.org/index.php

Here is the link and the conclusion of the study about white matter lesions and celiac.

http://pediatrics.aappublications.org/cgi/.../full/108/2/e21

Celiac disease (celiac disease), or gluten sensitivity, is considered to be a state of heightened immunologic responsiveness to ingested gluten proteins in genetically predisposed individuals. The gastrointestinal manifestation implies a severe enteropathy of the small intestine with malabsorption, steatorrhea, and weight loss associated with characteristic lesions of the small bowel mucosa, which improve after withdrawal of gluten from the diet. It often is associated with the presence of antiendomysial and antigliadin antibodies. The pathologic mucosal immune response has a background of genetic susceptibility. Investigations showed that 70% to 100% of monozygotic twins and 10% of first-degree relatives are concordant for the disease.1-3 There is a strong genetic association with the human leukocyte antigen types DQ8 and DQ2 (DQA1 0501 and QQB1 0201 arranged either in cis or trans).4 Neurologic complications occur in approximately 8% to 10% of adults with celiac disease.5 These include epilepsy, associated particularly with occipital calcifications and folate deficiency; cerebellar ataxia; peripheral neuropathy; myositis; neuromyotonia; myasthenic syndrome; myelopathy; and dementia accompanied by brain atrophy in adults.6-10 The aim of this study was to investigate the spectrum, incidence, and risk factors of neurologic involvement of celiac disease in a mainly pediatric cohort.

It is not uncommon to have more than one autoimmune disease - there are more than 60 of them, hypothyroidosm, celiac and type 1 diabetes area common "cluster" of autoimmune conditions that can occur in the same person or within the same family. :( Neurologic symptoms are complex and can be related to deficiencies or a disease process. I will keep you in my thoughts - going through the diagnostic process and dealing with unknowns can be scary and frustrating- you have lots of support and empathy here - so return often! :)


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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I was diagnosed with celiac 18years ago. About 2 years ago they thought I had MS, I was having alot of the symptoms. After 2 different MRI's snd several trips to the nuerologist and normal doc., they couldn't figure out what was wrong with me.

After talking to my mom I realized I had alot of the same symtoms as her and she has fibromyalgia. So I did some research on the internet, found a good site with a list of the symptoms and printed them out. I highlighted the symptoms I had and took them to the Dr. He looked it over, asked a couple of questions. Then said it was a good description of fibromyalgia. He did a exam and proceeded to say, looks like that is what you have. He even put the list I brought him into my chart. And now we are trying to work out a good treatment plan for me. I try something for a little while, see if it works and go from there.

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I can't thank you all enough for all of the great information and words of support. I really appreciate this, as it's been a difficult time. I can speak to friends and family about this, but I have a lot of close friends that I work with that I haven't told about these issues because I don't want it to get back to my employers that I'm struggling with something nasty--I just want to do my work and get on with it. Consequently, I really appreciate that I can come here to talk about all of this.

At any rate, my right foot when numb on Sunday, and I haven't regained sensation--I just know this is an accident waiting to happen. I'm likely to step on it in the wrong way and hurt myself, so I'm being very careful when I walk. So if anyone has any suggestions for how to walk with a numb foot or how to soothe the nerve back into good behavior, I'd really appreciate it.

Doll--I don't think that the bloodwork they've done has been very specific just yet. I've been tested for lyme disease and a few other things, and my normal bloodcounts all looked good (high hemoglobin, etc). I also don't have mono--I had a pretty nasty case of it in college, and reoccurance only seems to happen in 1-2% of the population, and this just doesn't feel like that. I've also been vaccinated for meningitis. I haven't been tested for Epstein Barr though. The neurologist is going to test my B12 levels soon.

Lorka--I'm so sorry that so many people in your family are suffering with MS. Do you know what they do for numbness? That's the symptom that I dislike the most.

Nancy and Lindalee--I'd love to know the name of the book if you happen to have it handy--it would be really helpful. My doctor knows a good deal about MS, but he is not a celiac specialist by any means.

2kidsforme-- Thanks for the great site--I'll spend some more time exploring it. And thanks for the words of support as well.

P.S. I had my MRI yesterday--we'll see what it shows in a few days.


Diagnosed July 2004

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Guest Doll
I wouldn't get too caught up in *which* disease you have. I'm in a similar situation...being evaluated for myasthenia gravis because my anti-striatal muscle antibodies are equivocal, yet my symptoms overlap cystic fibrosis as well. If you research autoimmune and neuromuscular disease, you may come to the conclusion that I did that autoimmune disease...ALL of them...are caused by *leaky gut* and the resulting overgrowth of candida. *Which* disease you have depends on where the candida *lands*. You're going to have to fight your doctors though like I STILL am doing for a *candidiasis dx*. If you don't fight to get put on an antifungal long term and drastically change your diet, you will be flirting with autoimmune disease because docs are not taught to believe in systemic candida. And even if they were, the drug companies would never allow the profit loss by not being able to put an expensive little price tag on this ache, and another on that one, instead of fixing the REAL problem...YEAST! Please don't let docs fool you into believing you have *MS* when what you REALLY have is a backed up system like I do...a gut that leaked from food allergies to things you never suspected because you have eaten them your whole life. The fungus is in your muscles, your nerves, even your brain. Your body is NOT attacking *itself*...your body doesn't make *mistakes* without man's help...HUMANS genetically modified wheat to contain unnatural glutens and then they all turn around and tell us we're diseased because we can't digest them? Nooo...your body is trying to kill the FUNGUS and the undigested mega-glutens and preservatives and toxins stuck in your muscles and nerve fibers. Please don't think you have MS...it's toxic yeast.

Go vegan. Identify your food allergies...I know mine were not justtt limited to glutens. No more processed food whatsover. Your body needs to detox, especially during the healing process. But do NOT let doctors give you a dx of MS...that is NOT your problem here...your doctor is not taught this stuff in medical school...you're going to have to be proactive to survive this...I'm still fighting my docs and it hasn't been pretty...I'm fighting with everything I have for Diflucan...Carol

I'm pretty scientific, (but open-mined!) and this actually intrigues me! Thanks for posting the systemic candida info. We still don't know what the trigger is for the "leaky gut" is. I have always suspected a virus/bacteria, but for sure it could be yeast...

Have you any published stuff I could read in which people have had regression in their autoimmune diseases through curing the yeast overgrowth? I would be interested to know if we could prove people with autoimmune diseases have an overabundance of yeast.

I personally have taken courses of Diflucan, and while I didn't notice any change in my autoimmune conditions, I have had problems with yeast in the past.

Interesting.

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Guest Doll
Hi, as you probably read above, autoimmune (esp. MS) is rampant in my family. I am NOT disagreeing with you (as I am living proof), but am wondering if you have any handy documentation? I have a few, but I know that some people would be interested (IE some of my family).

Thanks!

People are only just beginning to connect all the dots between autoimmune diseases :blink: , so research is not that plentiful.

Don't forget that essentially all autoimmune diseases are the same disease, but often present in different ways for reasons not entirely clear. It's not uncommon to have a mother with Type 1 diabetes, a child with Celiac, and a sister with MS.

BUT, we do know the suspect HLA type behind MS, DQ6. Now, this is not the same that is affliated most with Celiac directly, but people with this HLA type seem to react to gluten, although not as much as other HLA types.

I believe the link may be more with the AIRE gene, an autoimmune regulator. There is not much data on this for either MS or Celiac YET. There are also other genes associated with Vitamin D absorption, and these have been found to be altered in MS, Type 1 diabetes, and possibly Celiac. These studies are on-going, and there has been some conflicting evidence, but it's an idea. It seems like all autoimmune diseses either share ONR major genetic defect (as in the AIRE gene) or little pieces of each gene overlap to cause multiple different autoimmune diseases in the same family.

It is very possible we have not identified all genes need for either of these diseases as well.

Link

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Guest Doll
Trust me...it's YEASSST! My symptoms sounded just like yours in the beginning. They were all sort of vague. My first *symptom* was painless enlarged lymphs in my groin. They feel like kidney beans where the thigh joins the pelvis. The GYN blamed them on shaving, and since I don't like *probablies*, I stopped shaving to see if they'd resolve. They didn't. But this is when the joint pain and numbness all started, with flare-ups in the spring being the worst (my spine and neck and shoulders). I kept pointing these lymph nodes out to docs, but scans showed nothing of concern. A lymph node appeared under my jaw as well at this time. I had been on antibiotics frequently for sinus infections, and then a week or two on steroids once or twice because I'd lost my voice. That's when things really got bad. I noticed my face would break out and Lamisil would help these areas on my face. My PCP at the time told me it was the moisture in Lamisil, but when I replaced it with moisturizer, the rashy areas returned. It looked like patchy, mild acne...nothing more. One other thing I noticed was a white coating on my tongue, especially in the morning. You might want to keep an eye on your tongue. Sometimes it even looked bluish-white.

Then the *irritable bowel* started. Docs blamed my GI symptoms on *anxiety*. That was over 2 years ago. Today I'm sitting here with Vitamin A and D deficiencies. I know I am deficient in ALL fat soluble vitamins from almost 3 years of ingesting wheat/glutens and other food allergens, not realizing I was allergic and had a yeast overgrowth. I'll post some links for you, but DON'T let doctors diagnose you with MS instead of candida. Drug companies make more money by suppressing cures, and though deep down doctors know the candida theory holds substance (my joint pains and everything went away the few times I was on Diflucan...you may not have been on it long enough), they are at a loss at how to prove it medically and most are unwilling to try long-term antifungal treatment without proof. I'm scheduled to see infectious disease because no doc I've seen yet will even treat my thrush. All cultures show *normal* flora, but an overgrowth is NOT normal. You definitely want to be treated for candida before you have vitamin deficiences and end up with autoimmune disease...I once had beautiful hair and it thinned out sooo much and look like straw. My bones thinned and everything. If you think about it, many autoimmune diseases are first treated with steroids (to reduce inflammation) and then antifungals to cure a fungal infection that was probably there from the get-go. Hope these links help!

http://www.Lame Advertisement/save/candida.html

http://www.annboroch.com/candida.htm

Well, I think it's a little premature to say that yeast is causing this 100%. It's one thing to have GI issues, rashes, a white tongue etc (all clinical signs of yeast overgrowth) that you think are caused by yeast, as opposed to nerve damage resulting in a numb foot.

I think that it's interesting to examine the connection between autoimmunity, the leaky gut, and yeast, but until that's researched and proven more, I don't think it's good to recommend someone not pursue treatment for possible MS in favor of treating a yeast overgrowth that isn't clinically diagnosed, and without a proven scientific connection.

Don't forget that Diflucan can cause liver damage and even liver failure. I was on it multiple times for 1-5 weeks.

This is one possible theory that may help. I do agree that it may.

I just think that we need to always proceed with caution, because even the "natural" medical community and it's theories has it's limitations in treating illness, and they want your money too.

Again, I am interested in your theory, but I need more info.

Some of the symptoms you desribe could simply be from Celiac/GS which you have.

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I found that post-It is under B-12. :)

Ifound that post under B-12.

It was "The brain Book" by Dr. Perimeter --can't find my notes but I know I posted several places about this. He was very good when I heard him speak.


Lee

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thanks Doll, i'll forward that to my aunt. she'll like that. we're aware of all of that, but sometimes having actual info (IE written and recorded) is good.

nicoleaj, everyone with MS in my family is on medication, so sometimes that is counterbalanced, and their other symptoms or side effects over power. my mom has specific stretches that she does from her naturopath and neurologist that somewhat help with that. do you do any stretching?


Gluten-free, Vegan

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Good news--the MRI of my brain came back normal. Thank goodness! We still don't have answers, but without lesions on the brain, I'm not really concerned about MS anymore. I'm going in for an MRI of the cervical spine and an EMG of the right leg next week.

Lorka--I do stretches but mostly of the back and neck since my physical therapy was prescribed during the time when the neck and back pain was the most unpleasant symptom, but I've started to do some more leg stretches recently. I'll just have to learn which ones help the nerve pathways in the leg the most.


Diagnosed July 2004

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Nicole--

That is good news! :) I'm so glad that, at least, the MS has been ruled out.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Nicole--

That is good news! :) I'm so glad that, at least, the MS has been ruled out.

Yes, that is wonderful.


Lee

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