Non-Specific White Matter On Mri? Anyone Else Have This?

[Cara in Boston]

My brother is in the process of undergoing various tests because of some weird symptoms. All his symptoms seems sort of vaguely autoimmune and since my son and I have celiac, I urged him to test for that first. His blood test came back negative, but they only did the total IgA and DGP IgA? Nothing with IgG . . . Anyway, his total IgA was high, which was weird - not sure what that means.

Since one of his most bothersome symptoms is numbness/tingling in his hands, he had an MRI done last week. All clear for anything like a brain tumor, but they did find "non-specific white matter" and are now looking to do further testing for MS. I think I remember reading somewhere here that this could also be caused by celiac or gluten intolerance.

Does this sound familiar to anyone? He is totally freaking out -

His other complaints are really random - mouth sores (occasionally), dry eyes, eyelashes falling out?, itchy patches of skin . . .

He has never made it more than a few days trying out gluten-free to see if he feels better - single guy, eats out often, likes his beer, etc.

I don't think he should rule out celiac disease quite yet . . . at this point, having celiac disease would be GOOD news.

Would love any input.

Cara

[pricklypear1971]

I hope more knowledgeable people will pipe in...

Did they scope him?

[beachbirdie]

My brother is in the process of undergoing various tests because of some weird symptoms. All his symptoms seems sort of vaguely autoimmune and since my son and I have celiac, I urged him to test for that first. His blood test came back negative, but they only did the total IgA and DGP IgA? Nothing with IgG . . . Anyway, his total IgA was high, which was weird - not sure what that means.

Since one of his most bothersome symptoms is numbness/tingling in his hands, he had an MRI done last week. All clear for anything like a brain tumor, but they did find "non-specific white matter" and are now looking to do further testing for MS. I think I remember reading somewhere here that this could also be caused by celiac or gluten intolerance.

Does this sound familiar to anyone? He is totally freaking out -

His other complaints are really random - mouth sores (occasionally), dry eyes, eyelashes falling out?, itchy patches of skin . . .

He has never made it more than a few days trying out gluten-free to see if he feels better - single guy, eats out often, likes his beer, etc.

I don't think he should rule out celiac disease quite yet . . . at this point, having celiac disease would be GOOD news.

Would love any input.

Cara

How about Sjogren's Syndrome? That can cause white matter lesions, dry eyes/mucous membranes, rashes, hair loss, central nervous system problems (numbness/tingling). Sjogren's is an autoimmune condition, like celiac. Oh...funny thing... Sjogren's is often associated with celiac! Sorry your brother is being so stubborn.

I did a Google search and came up with lots of journal articles about it.

There are some tests that an astute doc can do, but it's harder to get anywhere with Sjogren's than it is with celiac!

There are a number of Sjogren's people here on the forum, you could do a forum search for Sjogren's and find out a little more.

[ravenwoodglass]

That sounds like it could be UBO's or Unidentified bright objects which show up as white spots on an MRI. They can be diagnostic of celiac that has attacked the brain, as was my case. If his spinal tap comes back clear for the MS debris then chances are pretty good that is what is going on with him. Not all doctors are aware of the connection between the white spots and celiac. Interestingly I had repeated false negatives on blood work. When your brother is done with all celiac related testing he should go gluten free. It may help him a great deal.

[Jestgar]

I was going to suggest you contact Raven, but she's already here. I'd guess that she's the most knowledgeable about the UBOs.

[IrishHeart]

I saw this topic title and thought....they should PM Raven...but here she is!

and Sjorgen's comes to mind as well.

Elevated IgA levels are found in various autoimmune disorders and infections, but given your family history and his symptoms, well...gluten intolerance seems very possible.

Just because he is negative on blood work doesn't rule out anything. IMHO

[Skylark]

They didn't do the right tests to pick up celiac-related neuro problems. They would need to do the old anti-gliadin IgA and it's very prone to false negatives.

Someone just pointed out that Cyrex is doing assays for autoimmunity against the neurological transglutaminase, TG6. It's part of their Array 3 - Wheat/Gluten Proteome Reactivity & Autoimmunity.

http://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx

I don't know whether insurance would cover the testing but since you are trying to rule out MS it may be worth paying for out of pocket.

[Takala]

I had a positive for the brain lesions, aka "bright spots," which were not the same type as seen in MS. Had quite the falling out with the nasty, idiotic neurologist who found this and still insisted it had nothing to do with my diet, as she had spent the past year testing me for "other things" instead of what I told her I already had and had been tested for previously. (Process of elimination, it's not just for the professionals.... ) She had the medical version of a temper tantrum and lied to my face about another test result when I confronted her.... by asking what parts of my brain function would be effected by said brain lesions..... please elucidate...... no coherent answer for that one.... had to do an end- run around her office and demand the test results from the staff, because they wouldn't schedule an appointment, and wouldn't discuss this on the telephone, and then canceled on me.

Current PCP doctor accepts my gluten free, gluten intolerant status because he doesn't often see patients who experience spontaneous remissions and CURES for most of what was plaguing them. Oh, and he got the whole story about the fruitcake neuro on her wild goose chase.

I also do not have this wheat/gliadin protein antibody reaction show up on blood tests, so technically, even tho I have classic neurological symptoms of celiac disease, other than I did not waste away and become thin, I do not have the official diagnostic seal of approval.™ I have had the spinal fluid draw for MS, and did not have that. Surprise ! I have gone thru about 20+ years of my adult life being mis- diagnosed, but the highlight was the neuro telling me I was making up my symptoms (I guess some people have nothing better to do with their time ?).

My advice would be that he consult another neurologist AND a celiac specialist (do this by email if he has to) if they are determined to go on one of these "fishing expeditions" when the evidence is sitting there staring them in the face that it is not really MS, and if they are hung up about the lack of positive celiac blood panels. You can also print off some of the technical articles by Dr. M. Hadjivassiliou, who is an expert in this topic, and give it to the doctors.

Changing what brand of beer you drink to a gluten free version, and substituting rice pasta for wheat and potatoes for bread, is a very small change to make compared to slowly and surely killing off your brain function with an auto immune reaction so you have so much neuro damage you can't walk without a cane or drive a car anymore.

Some further reading:

Must See- This is from the journal of Neurology, Neurosurgery, & Psychiatry

Gluten Sensitivity as a neurological illness, by M Hadjivassiliou, RA Grunewal, and GAB Davies-Jones

http://jnnp.bmj.com/content/72/5/560.full

Some highlights include :

Only one third of the patients with neurological disorders associated with gluten sensitivity have villous atrophy on duodenal biopsy.

PERIPHERAL NEUROPATHY

Peripheral neuropathy is the second commonest manifestation of gluten sensitivity. Prospective screening of 101 patients with idiopathic peripheral neuropathy has shown the prevalence of gluten sensitivity to be 40% (unpublished data). The commonest type of peripheral neuropathy we encountered is sensorimotor axonal (26) followed by mononeuropathy multiplex (15), pure motor neuropathy (10), small fibre neuropathy (four) and mixed axonal and demyelinating (two). The neuropathy is usually chronic and of gradual progression. Patients with a pure motor neuropathy may progress to involvement of sensory fibres.

Catch that ? VERY HIGH % of people with "idiopathic" (cause unknown) peripheral neuropathy turn out to be gluten sensitive !!!

Warning: Dr. Hadjivassiliou can be pessimistic about gluten ataxia not getting better on a gluten free diet.... I don't know if he has met/studied any people like me who stuck to a gluten free diet long term and did regain a lot of function and feeling in their extremities.

You can find a lot of other related articles by using google search, and the phrase celiac neurological hadjivassiliou

See also

Oxford Journals

Gluten ataxia in perspective, .....

http://brain.oxfordjournals.org/content/126/3/685.long

by Marios Hadjivassiliou1, Richard Grünewald1, Basil Sharrack1, David Sanders2, Alan Lobo2, Clare Williamson3, Nicola Woodroofe3, Nicholas Wood4 and Aelwyn Davies‐Jones1

The clinical characteristics of 68 patients with gluten ataxia were as follows: the mean age at onset of the ataxia was 48 years (range 14–81 years) with a mean duration of the ataxia of 9.7 years (range 1–40 years). Ocular signs were observed in 84% and dysarthria in 66%. Upper limb ataxia was evident in 75%, lower limb ataxia in 90% and gait ataxia in 100% of patients. Gastrointestinal symptoms were present in only 13%. MRI revealed atrophy of the cerebellum in 79% and white matter hyperintensities in 19%. Forty‐five percent of patients had neurophysiological evidence of a sensorimotor axonal neuropathy. Gluten‐sensitive enteropathy was found in 24%. HLA DQ2 was present in 72% of patients. Gluten ataxia is therefore the single most common cause of sporadic idiopathic ataxia.

_______

use google to find this article:

Brain and Neurological Problems Affect Almost Half of Celiacs.....

Brain-And-Neurological-Problems-Affect-Almost-Half-Of-Celiacs-Even-With-A-Gluten-Free-Diet&id=904155

[GFinDC]

Great info Takala,thanks for that!

I wonder if they tested him for vitamin/mineral deficiencies? That could be a sign of malabsorbtion if he has any. Which might point to some form of gut damage.

Another thread on topic.

 

[rosetapper23]

At celiac conferences, some experts claim that celiac is now considered a neurological disease and not simply a disease of the gut. Your brother's doctor didn't get the memo, I guess. Not only can the damage from celiac be evidenced from the white matter you describe....but also there's evidence that there can be reduced bloodflow to the frontal lobes of the brain.

[Cara in Boston]

Thanks so much for all the info. My brother actually came across this post while poking around on the web looking for information. He thought it was funny when he realized it was about him. He is in Boise and I am in Boston.

Just an update . . .

Neurologist looked over MRI images and said they look fine - no need to test spinal fluid as he saw no signs of MS. Said brain looked great. Brother asked about gluten intolerance (good boy!) and main doctor admitted he didn't know much about it, but younger doctor (student?) said "If you had celiac disease, you would have GI symptoms for sure . . . since you don't, don't worry about gluten" (He has zero GI symptoms)

Anyway, since testing started, he is now experiencing anxiety (he thinks this is because he is so worried something is wrong with him) and extreme fatigue. He also mentioned brain fog (difficulty concentrating, coming up with specific words, speaking in public) and other symptoms - ALL SYMPTOMS I HAD THAT RESOLVED WITH THE gluten-free DIET.

His next test is an MRI of spine . . .

He is convinced it is not gluten because of what the idiot doctor said and his ONE negative blood test. I reminded him that his nephew (biopsy diagnosed) had ZERO GI symptoms and also tested negative on the same test. He didn't seem swayed. He also finds it hard to believe that he would just "suddenly" have a problem with gluten after 37 years of eating it with no problem. (I tried to explain how it can be triggered, etc.) He is smart and well educated, but likes facts and answers . . . he is looking for a doctor to just tell him what he has and fix it.

They mentioned "Mixed Connective Tissue Disease" . . . and he is going to ask to see a Rheumatologist . . .

I'm worried that it actually IS gluten and he will (incorrectly) end up on various medications to treat the symptoms and the anxiety and he will just be a mess.

Any more advice or input on the MCTD? Seems like a stretch.

Thanks -

Cara

[IrishHeart]

Have your brother read this post, please Cara.

One of the many symptoms I developed was severe muscle, tissue and tendon pain, loss of muscle mass and weakness. I could not sit, stand, lay down or walk without agony. It even hurt to lay my cheek against the pillow or wear clothing.

To prevent total atrophy, I forced myself to keep moving for 3 years, despite my wasting buttocks and legs and burning joints and skin.

My muscles, tissue and tendons became like wood, so tight I burned and felt as if I were a tight drum. Physical therapists and massage therapists remarked "I have never felt anything like this. Your muscles feel different..."

The pain was excruciating. I saw 4 rheumies, 3 neuros, pain management specialists. I had tests out the ying yang.

I heard:

I have no idea

fibromyalgia

"pre-lupus" (I think he made that one up)

differentiated spondyloarthropy

mixed connective tissue disease

possible MS

I have no elevated C-reactive protein, but my sed rate was high.

(It has since come back down)

My progress is slow, but I do not have any of those things they suggested. I have worked with a PT and MT 2X a week for the last 18 months.

If he is given any of those "maybe" DXes, he will be given:

steroids

anti-depressants

tramadol

percocet

oxycodone

ambien

xanax

and worst of all, prescription NSAIDS or METHOTREXATE,

ALL of which will rip his gut lining and wreck his liver.

He claims he has zero gastro symptoms now? Wait until he has constipation, nausea. loss of appetite and INCREASED ANXIETY, MENTAL FOG and INSOMNIA from those "big gun" drugs.

I went this route for years. I have my brain and C-spine and L-spine MRIs right here. Except for some degenerating discs (which could blow any minute), I'm as clear on those images as your brother.

I was that way at 37 too, when all this pain started ---but by 51, all hell had broken loose.

I was a painful MESS until my DX and I thought death would be easier than to live in that pain one more day and now, I am reclaiming my life.

My celiac blood panels? negative every time. It happens frequently. Yet, I am a celiac nonetheless.

Tell him to just try the damn diet and stop the madness.

[cahill]

Have your brother read this post, please Cara.

Tell him to just try the damn diet and stop the madness.

This ↑ is the truth your brother needs to hear.

Many of us can tell him our storys,( if he really wants to hear it have him PM me I will be glad to tell him my story ) but " just try the damn diet" is all he really needs to hear.

If he is not convinced have him Google "gluten ataxia" that may get his attention.

[Cara in Boston]

I know, I know . . . and he knows too. I think he is willing to give it a try, but he wants to finish any kind of testing first (and sort of thinks he is done testing for celiac disease) . . . He is worried he will put it all on gluten and it will be something else and he will never figure it out until it is too late (or something like that)

He also thinks he is "causing" some of the symptoms because he is thinking about it so much . . . worried he is actually making himself sick and that some of the symptoms are all in his head. I told him I went through the exact same thing (5 years) and was amazed at how much better I felt gluten free and how quickly it all resolved.

I think he should at least go back and ask for the full blood panel (before trying gluten free) and then try the diet for at least a month. He doesn't think his doctor will refer him to a GI for an endoscopy (and I don't think he really wants one anyway) since he doesn't have a single GI symptom.

I just think his symptoms, combined with the fact that I have it and my son has it, are just too much of a coincidence for it to NOT be related to gluten in some way.

Another weird symptom he said he had was that his tongue was sore . . . like it had been scalded. Comes and goes. Never heard that one, but wouldn't be surprised if it were related too.

[cahill]

Catch that ? VERY HIGH % of people with "idiopathic" (cause unknown) peripheral neuropathy turn out to be gluten sensitive !!!

Warning: Dr. Hadjivassiliou can be pessimistic about gluten ataxia not getting better on a gluten free diet.... I don't know if he has met/studied any people like me who stuck to a gluten free diet long term and did regain a lot of function and feeling in their extremities.

You can find a lot of other related articles by using google search, and the phrase celiac neurological hadjivassiliou

See also

Oxford Journals

Gluten ataxia in perspective, .....

http://brain.oxfordjournals.org/content/126/3/685.long

by Marios Hadjivassiliou1, Richard Grünewald1, Basil Sharrack1, David Sanders2, Alan Lobo2, Clare Williamson3, Nicola Woodroofe3, Nicholas Wood4 and Aelwyn Davies‐Jones1

_______

use google to find this article:

Brain and Neurological Problems Affect Almost Half of Celiacs.....

Brain-And-Neurological-Problems-Affect-Almost-Half-Of-Celiacs-Even-With-A-Gluten-Free-Diet&id=904155

I am not "officially" diagnosed with Gluten ataxia, I went gluten free before my neurologist could make an "official" diagnoses, but as far as she and I are concerned I have gluten ataxia.

Many of my symptoms have resolved since going gluten free but some of the damage may be permanent .

[cahill]

I know, I know . . . and he knows too. I think he is willing to give it a try, but he wants to finish any kind of testing first (and sort of thinks he is done testing for celiac disease) . . . He is worried he will put it all on gluten and it will be something else and he will never figure it out until it is too late (or something like that)

He also thinks he is "causing" some of the symptoms because he is thinking about it so much . . . worried he is actually making himself sick and that some of the symptoms are all in his head. I told him I went through the exact same thing (5 years) and was amazed at how much better I felt gluten free and how quickly it all resolved.

I think he should at least go back and ask for the full blood panel (before trying gluten free) and then try the diet for at least a month. He doesn't think his doctor will refer him to a GI for an endoscopy (and I don't think he really wants one anyway) since he doesn't have a single GI symptom.

I just think his symptoms, combined with the fact that I have it and my son has it, are just too much of a coincidence for it to NOT be related to gluten in some way.

Another weird symptom he said he had was that his tongue was sore . . . like it had been scalded. Comes and goes. Never heard that one, but wouldn't be surprised if it were related too.

I agree he should have all the celiac testing before going gluten free.

And ( after going gluten free ) have other testing done to be sure what else ( if anything ) is going on.

I felt the same way I wanted to make sure there was nothing else going on,, truth is celiacs rarely stands alone,, there are other Autoimmune diseases that go hand and hand with celiacs.

If he is going to "try" the gluten free diet,, he should do so for at least 8 weeks ,, it can take that long to get past the withdraw from gluten .

[IrishHeart]

Another weird symptom he said he had was that his tongue was sore . . . like it had been scalded. Comes and goes. Never heard that one, but wouldn't be surprised if it were related too.

scalded, burned tongue, mouth, throat, my whole GI tract.

In flames. It was misery. (no doctor knew what that was either and some suggested I take anti-depressants)

It's a symptom !!!

and I had it all for 3 years(check Recognizing Celiac Disease by Cleo Libonati)

It's gone now.

[pricklypear1971]

Tell him gluten can affect neurological functioning - making you kinda stupid and stubborn.

The longer you're on it the dumber you get, and sometimes you just can't reverse it...and all that's left us a pile of dumb-ass that didn't listen to his sister, whimpering on the floor.

Okay, I said it and if he isn't too far gone he'll see it when he googles.

Anyway, he's in a denial. Sure, he wants to "know" (don't we all?)...but at the heart of it is denial.

The only thing a gluten-free diet will "interfere" with testing for is Celiac so his rationale doesn't hold water.

He doesn't "want" Celiac. Who does???

Okay, my commentary is over. Your brother should meet my Dad. And my Mom (who claims she will be tested....soon).

[frieze]

the sore tongue may well be a Vitamin B12 def. symptom. .....and where might that have come from....lol.

[Ninja]

Another weird symptom he said he had was that his tongue was sore . . . like it had been scalded. Comes and goes. Never heard that one, but wouldn't be surprised if it were related too

Maybe GERD? We all know that's related.

[cahill]

Maybe GERD? We all know that's related.

My previous PCP definition of GERD ;

Your digestive track is raw from your mouth to your rectum and I dont know why :P :lol: ,

[cahill]

the sore tongue may well be a Vitamin B12 def. symptom. .....and where might that have come from....lol.

[Ninja]

My previous PCP definition of GERD ;

Your digestive track is raw from your mouth to your rectum I dont know why :P :lol: ,

Ok, maybe not!

[IrishHeart]

My previous PCP definition of GERD ;

Your digestive track is raw from your mouth to your rectum and I dont know why :P :lol: ,

I have used this very sentence on here, Chill!

"My GI tract was in flames and raw--from my mouth to my rectum."

Even water hurt going down.

But, it was "just GERD" the GI's snippy NP told me as I cried, a shaking bag of bones sitting in front of her....and she gave me a bag of Aciphex to take home. Oh, and a script for anti-depressants.

Both went in the trash.

[basilicious]

Another weird symptom he said he had was that his tongue was sore . . . like it had been scalded. Comes and goes. Never heard that one, but wouldn't be surprised if it were related too.

I've been having that symptom lately, and although I have been inclined to think it is caused by certain nuts (never, ever had an issue with them before!), I am not convinced. This has already been an informative post, but I will certainly be monitoring it to see if anyone comments on that symptom...I've been describing it as a tingling, but it really does feel more like a scalded tongue!