Just Been Told Ms Could It Be Ataxia

[Leis]

Hi, ive been gluten free about 5 weeks.  I had been housebound with CFS.  After a couple of weeks off gluten i was feeling much better so much clearer in the head. Then about 3 weeks in my speech started to slur a bit then my tongue swelled up and once it went down my speech was so bad, stammering, stuttering, slurring.  I had thought it was a withdrawal but my friend took me to a and e. They did a brain scan told me i had a stroke,ms or tumor. And tehn sent me home.  With a referal for MRI in 8 days.  Ive had the MRI results, they say its ms.  Im terrified and devestated.  

 

I have been reading about ataxia lesions and how similar they are to ms.  It seems such a coincidence this happened just as i gave up gluten.  He said there wasnt a lot of lesions but one on  my speech centre.  Can any of you give me advice on this or am i just clutching at straws?  Thank you so much.  Leis

[VeggieGal]

Hi Leis, are you confirmed celiac? Sorry to hear you've been dx with MS but have they confirmed it with other tests?

I'm not much help really as Im just trying to learn about gluten ataxia myself as Im convinced my son has it although has had negative blood tests. Theres abit of info here from a previous post https://www.celiac.com/forums/topic/80936-gluten-ataxia/ and Im sure others on here will be able to offer some help. good luck

[Takala]

You're not clutching at straws.  They kept telling me I "probably" had MS, in addition to all this other stuff, for about 20 years, went through all that testing, and I didn't have MS, just the symptoms of MS.   The last time it flared up badly, they wanted to repeat the puncture for spinal fluid test, I absolutely refused and said no way.  They did my brain scan, and there were celiac lesions, only the neuro doctor wouldn't believe it, told me it was impossible that this was diet related, and said they were lesions, but not the MS kind.  So what kind? Generic? Are you implying that this is idiopathic? You can't give me any hints where this comes from ? They weren't there before.  Are you freaking kidding me with all my other symptoms?  Oh, to heck with that, I went on the gluten free diet anyway!  My PCP doesn't mind.  What a fooking wild goose chase!   

 

Try to get a second opinion, someone else to look at your scans, not just the lab reports, get a doctor who is familiar with the difference.  Don't give up and get devastated here.  

 

Have you had gluten/celiac blood testing ?  I don't throw a positive test.  It takes a long time to heal from this sort of damage, but it can be done, I have had most of my vision problems resolve, but my eyes still cross when I get glutened, and I get slight wisps of being off balance if it is a bad glutening, so I try to be hyper vigilant.  And this is 10 years in.   My hands aren't numb, and about 3 years ago I even began to be able to feel both feet well enough, that I can now drive a stick shift automobile if I want to.  I can touch type, fast, and I thought I was never going to be able to do something like that.  I noticed my speech was clearer, easier, but when I am stressed I have to concentrate harder than a normal person, I don't speak like my wordy, copious typing.    (spouse is probably happy about that. , hah hah!)  

 

It takes a long time to get the gluten free diet down "just so" for the sensitive ones, concerning cross contamination, so it would not surprise me that a person could still have an "episode" while on the beginning gluten free diet.   If you are feeling more clear headed gluten free, then that is a physical symptom that you do react to gluten.  Eating gluten when you should not, is extremely fatiguing.

[Kamma]

Hello Leis,

 

I was diagnosed with gluten ataxia last year and do have some lesions.  My brother was diagnosed with progressive relapsing MS, the rarest and most disabling type, fifteen years ago.  My understanding of the lesions is it's where they are forming in the brain and brain stem that decides whether it can be diagnosed as MS or not.

 

On a positive note, my brother adopted a totally gluten free/grain free diet after I was diagnosed and shared information with him.  He had also eliminated dairy products years ago.  There are some studies that show some but not all MS afflicted people gain some relief of symptoms after going absolutely gluten free (i.e. no processed gluten free products and little non gltuen grains / cross contamination).  There has been no clear connection established as of yet.  In my brother's case, his fatigue and restless leg syndrome decreased as well as his vertigo.  He's had fewer acute attacks.

 

Jane Anderson writes about the research on the connection between gluten and MS here:

 

Open Original Shared Link

 

and includes the research paper citations that she used to compile the article at the bottom of the page.  You can read first hand the research that is being done in this area.

 

If accurate, a diagnosis like this is devastating.  The bright side could be that you might have the kind of MS where you can have an attack and then go into remission for years.  I applaud your efforts to dig deep and research what would be the best approach to move forward.  Some people have ms and are able to live full lives with minimal impact.  I hope that in your case, this is the situation. 

 

Big hug,

Kamma

 

Edit:  Hello Leis, I've done some checking and found a few more things that might help.  According to the MS Society of Canada and the National MS Society, a diagnosis of MS must include:

 

"In order to make a diagnosis of MS, the physician must:

• Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
• Find evidence that the damage occurred at least one month apart AND
• Rule out all other possible diagnoses

In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using magnetic resonance imaging (MRI), visual evoked potentials (VEP) and cerebrospinal fluid analysis to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one Open Original Shared Link (also called a relapse or an exacerbation) of MS-like symptoms — referred to as a Open Original Shared Link. A person with CIS may or may not go on to develop MS."

 

and the strategies used for doing this should not just be an MRI but also:

 

"At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. The doctor uses several strategies to determine if a person meets the long-established criteria for a diagnosis of MS and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful Open Original Shared Link, a neurologic exam and various tests, including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis."

 

Open Original Shared Link

 

So, hold out judgement on the MS for a little while until your doctor completes the other tests and follow through on the different strategies.  There is hope that it could be something else. 

 

Kind regards,

Kamma

[Leis]

Thank you everyone, your posts have made me cry with hope.  Thank you for taking the time to write to me and give me al this info.  I have more testing next week, i think clinical and looking in my eyes and things.  There has been about 3 people look at my scans because my cousin works at the hospital and got a second opinion.  They said is some kind of ms illness.  He said there wasnt many lesions but  there was one on my speech, which explains why i lost my speech was so bad for a couple of weeks.  Where are celiac lesions normally and whats the difference in apperance?  Im not confirmed celiac, i just went gluten-free a few weeks ago and felt so much better.  Thats why this is such a shock.  With my m.e/cfs ive felt awful for years and barely been out the house the last couple but when i went to a and e with the speech problem i felt good, iw as coping with light, noise, everything.  I thought id finally cracked it and then this news. Will a normal neurologist be familiar with celiac scarring?

Thank you so much

Leis x

[Kamma]

Hello Leis,

 

The neurological impact of gluten ingestion is slowly gaining traction in the mainstream medical community but not enough where I would say neurologists are familiar with the ins and outs of it.  It's only been researched in the last fifteen years or so.

 

It would be good to err on the side of caution and assume the neurologist doesn't know a thing about it and start doing the research yourself so you can inform him/her.  A most excellent place to start would be anything by Dr. Marios Hadjivassiliou, a neurologist based out of Sheffield, England who is behind much of the research into gluten ataxia. 

 

The GlutenFile has linked to some  of his research and would be a good place to start familiarizing yourself with the ins and outs.

 

The site is here:

Open Original Shared Link

 

and M. Hadjivassiliou's research is linked in the left hand column.

 

A good initial start would be reading his, "Celiac Disease from Gut to Brain" as it encompasses his findings from most of his reasearch to date. 

 

Link to Gut to Brain here:

 

Open Original Shared Link

 

Kind regards,

Kamma

[GFinDC]

Hi Leis,

 

This page link to Livestrong.com has a list of various conditions / symptoms in the tongue.  I didn't see where it talked about tongue swelling for MS.  But there are quite a few conditions listed that can cause tongue symptoms.

 

Open Original Shared Link

 

The ataxia lesions in celiac disease are sometimes called UBO's (unidentified bright objects).  There's Swedish researcher that has done a lot of work on celiac affects on the brain who's name I can't spell.

[Leis]

Thanks for your replies and thanks Kamma for all the links.  I will read up more and maybe take some print outs with me.  Im feeling less confident today that its the gluten.   I wrote my story on Dr Charles Parkers web page, an expert in gluten and this is what he said:

 

 Leis,

Highly unlike that was related to withdrawal from Gluten – more likely in the process of detox some other elements were mobilized on some level and you had a toxic reaction. If you had/have MS, that reaction didn’t cause it, it likely only aggravated a quiescent pre-existing condition. Very unusual. Your prognosis is more encouraging and positive in the sense that it took a real insult to reveal the issues. Strongly recommend IgG testing and Open Original Shared Link.

Read more: Open Original Shared Link

 

I think ive brought dormant ms on by detoxing too quick.  I also had a bad flu a week into starting my diet.  Ive put too much pressure on my body. Im still so scared but theres nothing i can do but wait for more tests.

 

Take care, Leis x 

[Kamma]

Hi Leis

 

I looked at the links you provided.  I have never heard of Dr. Charles Parker and wanted to see what his credentials were and what qualified him as an expert.  He has a bachelors degree in biology and labels himself as a neuroscientist ( (which is different than a neurologist and there is nothing that certifies you as a 'neuroscientist') and has taken some courses in psychiatry.  This doesn't provide him any qualifications to be able to speak as an expert on gluten.  He has done no clinical research and it doesn't look like he's ever worked with celiac/gluten intolerance people in his practice which appears to be webbased.

Here:  Open Original Shared Link

 

I'd just like to caution you to familiarize yourself with the basic fundamentals of both MS and gluten ataxia or celiac as there is a lot of people out there who write on it, claim they are experts, but pull their opinions out of their ass and without credible research.  It's okay to hypothesize.  But without a firm understanding, you can be easily manipulated to believe one thing versus the other even when it's not accurate.  Also, when you're first diagnosed with something, you're at your most emotionally vulunerable point and you can be tossed around like a little boat in a huge storm at sea.

 

From the gluten ends of things the more credible researcher to start out with, other than Hadjivassilliou is:

 

Dr. Alessio FAssano, Centre for Celiac And Research, Massachusetts University Hospital, Open Original Shared Link

 

and the MS Society's have a whole whack of information to start building your knowledge level.

 

Kind regards,

Kamma

[Leis]

Thank you again Kammy for helping.  I didnt even read his background info or anything!  Im not thinking straight.

 

Ive read the articles by Hadjivassilliou and Im going to print them out and take them with me.  I think the one with the four MRI images will hopefully convince him to listen to me.  Hadjivassilliou is in Sheffield and im in Glasgow so if i ever wanted to try and see him it might be possible, which is good.  

 

Im just waiting for my next appointment, think itll be in a couple of days.  I think ill pass the clinical test, all my reflexes are ok but dont know if this will make any difference if they have lesions on a MRI scan.

 

Thanks again, take care

Leis x

[Kamma]

Hello Leis,

 

Glad you found that helpful.  I wondered, after I wrote it, if I wasn't coming across too strong with it.  I've found it's good to keep an open mind but also essential to have a good working knowledge so you're able to sift through what you're hearing/reading with some discrepancy.  There's lots of people selling wonder cures which is great but let's see the research to back up the wonder cure.

 

I'm so tickled that you live relatively near Sheffeld (Glasgow is a lot closer than Canada which is where I reside) and can have access to Hadjivassilliou's clinic.  I wish we had something comparable in Canada but so far there is nothing. 

 

You'll probably have the Evoked Potential Test for MS (they might call it something different in the U.K.).  I had that as well in the early stages when they were trying to figure out whether I had MS.  Basically you are wired up to a machine that reads your nerve impulses to certain stimuli.  They will test the eye nerves, auditory and your hands/legs nerves.  My understanding of this is if the testing comes back normal, it's not certain that the lesions in the brain are MS.  Remember they need a positive hit from all three aspects:  the MRI, the nerve tests and previous medical history.

 

Something to consider:  if the MS testing comes back normal and you choose to explore gluten ataxia you'll have to come to a decision on whether or not you want to keep consuming gluten prior to receiving a diagnosis.  In the case of gluten ataxia, the current testing might not catch any antiobides to gluten and there is evidence that the damage to the brain from consuming gluten becomes irreversible after a certain point.

 

Please do post here on how your testing goes.  I wish you the very best.

 

Kind regards,

Kamma

[VeggieGal]

Hi Leis, I recently went to a presentation at Sheffield (I live ten mins away) from Dr Stuart Currie a neuroradiologist working with Professor David Saunders, Dr Hoggard and Dr Hadjivassilou. Dr Currie is currently in research looking at brain aspects and imaging in patients with Coeliac disease.

So if you are thinking of going that route, it may be worth contacting Dr Currie as a first step (being as he is wanting to research patients).

It was the Sheffield group for Coeliac uk who organised the presentation so they may have his contact details. (I have contact/organiser, address and phone no. for Sheffield group if you need it).

All the best

Edited to say...the presentation was too indepth for me and went over my head in places but Dr Currie seems a very approachable guy with patience ! if you choose to contact him

[Leis]

Thank you Kamma, youve been very helpful and kind.  Thanks for letting me know what to expect in the EPT test.  Ill let you know how i get on.  x

Thanks VeggieGirl, that sounds like it would be a great idea.  I will definitely get in touch with you for more details, if you dont mind.  Provided i dont come out positive for MS that is   . 

Take care

Leis x