Brain Lesions

[jenarella]

Hi,

About 3 weeks ago I was diagnosed with Celiacs. About 4 years ago my neurologist found that I had white matter brain lesions, and thought that I probaly had MS, while undergoing testing for MS, I lost my health insurance. So I did not go to the doctor again, until recently I just got health insurance again. My question is has anyone here heard anything about celiacs causing white matter brain lesions? I would love to be able to rule MS out if I could.

Thanks!

Jenarella

[IrishHeart]

Hi Jenarella!

Here is an article of interest for you on white matter brain lesions and celiac.

I believe some people on here had brain lesions--hopefully they will chime in to help you with this topic.(I had several neurological/cognitive/ataxia issues--but do not think I had lesions. My brain MRI was "clear".)

https://www.celiac.com/articles/112/1/Brain-White-Matter-Lesions-are-Common-in-Celiac-Disease/Page1.html

MS could also be associated with celiac, I believe.

EDITED TO ADD: If this link does not work (sorry), TH has also included this article in her post below!

[T.H.]

I couldn't say that MS can be completely ruled out - celiacs tend to be in a higher risk category for developing other auto-immune disorders - but I CAN say that white matter brain lesions can be related to Celiac Disease, it's believed.

white matter brain lesions in Celiac Disease

There's been more than one study on this type of thing - neurological damage from celiac disease - and most find that damage stops while on a gluten free diet, and a very few found that damage went away.

You might have noticed on the article I linked to above that the study didn't find any relationship between dietary compliance and the lesions. There is one problem with that finding.

Gluten free food is not actually zero gluten, it's 'really, really low gluten.' It's a legal term, in other words, that specifies X ppm of gluten to be allowed in a food for it to carry the label gluten free.

Most medical experts consider the low amount of gluten to be fine for celiacs. Some of us celiacs, however, are finding out that the gluten allowed in processed gluten free foods (like cereals, cookies, crackers, pastas, that sort of thing) can be too much for us. We still react. There's a super sensitive section here on the forums for those of us who fall in that category.

Of the celiacs I've met, quite a number who have neurological symptoms seem to need lower amounts of gluten than the norm, in order to have their neurological symptoms go away. But during studies of folks with neurological problems from gluten, nothing other than the average gluten free diet is ever tried, so this has not been studied yet. The studies simply say that a gluten free diet doesn't work, and leave it at that.

And as celiacs, all we've got are anecdotes about going that extra mile to eliminate gluten, really, to back it up...often because many of us can't afford to go back to test and see if the neurological damage has disappeared. Although we can feel the difference as numbness or trembling disappears, or vertigo is gone, etc....

If you find that you are still having neurological trouble on the regular gluten free diet, it might be worthwhile trying to avoid a lot of the processed foods to see if it helps some with the neurological symptoms. Although for those I know of who got rid of these, it often took quite a while, months to years, sometimes.

If a super gluten free diet doesn't help, then MS may still be a potential problem, sorry to say.

[Takala]

I am/was one of the people with brain lesions and neurological symptoms resembling MS. It wasn't.

How do I know this. Because by changing my diet, I regained much balance, and the feeling in my hands, arms, shoulders, feet, calves, and my vision improved dramatically, and I am no longer partially color blind in one eye nor almost night- blind.

I had the spinal tap thing test for MS back in the early 1980's, and it was negative. But because by then my cervical (neck) spine was a piece of ****, arthritic, and I already had stenosis and bone spurs, they tried blaming it on that, with the "possibility" of it being or turning into MS.

These symptoms got much worse about a decade ago (aka 20 years later) and after screwing around with the uncaring and incompetent Name Brand 'Live a Healthy Lifestyle' HMO in the state of CA (Don't, for the Love of God, voluntarily select a HMO for your insurance, if you have a choice) my spouse convinced his boss to offer the option of different insurance and I started messing around with different doctors trying to get this further diagnosed. This led to a year long interlude with the Neurologist From H*ll, who first acknowledged that there was something indeed wrong, but who eventually reneged after going down the wrong trail and attempting to misdiagnose me and then trying to cover it up. The finale was my sitting there looking at her, as she told me there was nothing wrong with me and that I was basically a head case, and that diet had no relationship to my symptoms, even tho her office had called me up and told me the (freaking MRI) scan showed brain lesions AND I had gotten copies of the other test showing that Yes I Still Had Spinal Stenosis.

I know they really hate people who research stuff on the internet, but give me a break, for once. Because she was also contradicting the more competent docs I had seen decades earlier who at least said "wow that's a bad spine for your age, you should be sucking down the supplements with that." If you are going to make me fill out pages and pages of medical history, at least read the back story and the x rays.

I went back to another PCP and ratted out the Bad Neuro, and told the guy Hell Was Freezing Over before I ate gluten again, since he had seen the scan results and I'm still upright, ambulatory, and better than before, he humors it. But I don't have a positive bloodwork to show anyone and I've not been biopsied. I don't really need a genetic test because I am from of all the ethnic groups more likely to get celiac, northern European/Indigenous mixed, I have the light skin, I was born strawberry blonde (duh ! and did the grey come in darker, yup, what is with that ?) and I'm pretty sure I'm third generation but the others smoked tobacco (which is supposed to act as a preventive, they have recently discovered.) If this country could stop being so eager to discriminate, I am sort of curious if I'm in the rarer category of just having the gluten intolerant genes.

At first, I ditched all grains entirely and most dairy and went to a modified Specific Carbohydrate Diet minus the yogurt. I was motivated to expand that after we lost electricity for the better part of a week in the winter, which meant that I needed to transition to be able to eat something non perishable in emergencies. (learned my lesson on that one, now I know I can go a long time on peanut butter.) I am still not very grain/carbohydrate tolerant, nor can I do much sugar, which is a shame because I'm good at baking and like to experiment, but I'm really good with ground almonds and blessed to not mind bean flours.

I disagree with the doom & gloom scenario. Stick to the gluten free diet. If my neuro symptoms could improve, certainly this is possible for other people's.

Almost forgot, have to constantly work on my sense of balance with exercises so I look normal. This is a very fatiguing auto immune disease at times.

Here is another article on bright spots and celiac- note how he explains the lesions are not the same as the MS ones. Okay, site did not like the link, so do a google search on this phrase in an ezine article

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

Many patients with Celiac disease also have what the radiologists and neurologists call "UBO's" on MRI exams of the brain. These unidentified bright objects (think UFO) are white spots that show up on images of the brain. When found in certain locations of the brain they are highly suggestive of multiple sclerosis (multiple scarring spots in the brain). However, though many people with celiac disease have MS like symptoms and these symptoms often respond to a gluten free diet when started early enough, the UBO's seen on MRI of the brain are typically not in the classic areas of MS. Instead it is common to find them in areas of the brain associated with migraines or balance difficulty (ataxia).

There are lots of studies of the neurological impact of eating gluten (you can get the back articles from 2006 and earlier for free, by registering) and also do searches on PubMed using these titles as search terms

Journal of Neurology, Hadjivassiliou, "Gluten sensitivity as a neurological illness" link http://jnnp.bmj.com/content/72/5/560.extract

[lcarter]

I'm one of those with a few brain white matter lesions. My family doctor, probably because of my age of 65 at the time it was discovered, said they were ishemia probably from small minor strokes. I told him about the connection to celiac disease which he wasn't aware of. I had the classic celiac disease symptoms for years but no GP or medical specialist, including 3 gastroenterologists, ever suggested celiac disease. So, I believe my celiac disease was long standing, probably since childhood, because I have had digestive problems ever since babyhood. My history includes carpel tunnel surgery on both hands and "migraine deviate" [migraine without the headache] since I have visual auras every 3-8 months or so. However, since starting the gluten free diet my hands are less sensitive and the auras are not nearly as strong as they used to be. Unfortunately, since the damage has already been done to my brain, I doubt I will ever be completely free of the auras.

[Judy3]

I'm one of those with a few brain white matter lesions. My family doctor, probably because of my age of 65 at the time it was discovered, said they were ishemia probably from small minor strokes. I told him about the connection to celiac disease which he wasn't aware of. I had the classic celiac disease symptoms for years but no GP or medical specialist, including 3 gastroenterologists, ever suggested celiac disease. So, I believe my celiac disease was long standing, probably since childhood, because I have had digestive problems ever since babyhood. My history includes carpel tunnel surgery on both hands and "migraine deviate" [migraine without the headache] since I have visual auras every 3-8 months or so. However, since starting the gluten free diet my hands are less sensitive and the auras are not nearly as strong as they used to be. Unfortunately, since the damage has already been done to my brain, I doubt I will ever be completely free of the auras.

OMG I felt like you were talking about me in your post. I had one lesion back about 4 yrs ago after an MRI for severe sudden headaches. The doctor told me it was from smoking (lol yeah right) I've had the aura's without the headaches too and they've gone away now that I think of it since going gluten free as have the headaches.. hmmmm I have had digestive problems my whole life, carpal tunnel on both hands, restless leg syndrome.. you name it.

[jenarella]

Thank you all so much for your feed back. I have been having stomache issues since I was in my early teens and also black out migraines. As time has gone on I have had issues with blurry vision, extreme vertigo causing me falls and broken bones and sometimes a inability to drive, leg and feet numbness, nerve damage found in my arm, sleep walking, extreme bloating in my stomache, stomache pain, heart burn, and in and out of the bathroom constantly. I was also very tired all the time and felt weak. I am 29 now recently got the celiac diagnosis as well as diabetes and borderline heart condition called prolonged QT disorder. Since going gluten free my stomache looks that of a normal person, my vertigo has gotten a little bit better, and the pain in my stomache is gone. I feel better now than I have since I was 13 years old. It makes me feel better knowing that other people have had the brain lesions and it was not MS. My spinal tap 4 years ago had come up inconclusive, as the levels were off but not to a huge degree. Thank you all for the information and kind words. I really do appreciate it!

Jenarella

[IrishHeart]

I hope your doctor will follow up on testing you, now that you have the celiac disease DX, because --as my doctor pointed out---celiac may not explain all your symptoms and we need to make sure no other organs/systems are compromised. I have MANY health issues as a result of celiac, but hope they will resolve in time.

As you mention quite a few issues here, I would make sure he /she tests you vitamin/mineral levels as well as monitoring your diabetes, heart and neurological issues. (you may have already thought of all this!)

As an aside, my dear friend was DXed with MS 25 years ago. On her own, she adopted a grain free/sugar free/dairy free diet, then went to a vegetarian diet. She has kept her MS controlled and she even ran the Boston Marathon a few years ago! Since my celiac DX, we have discussed the very real possibility that she has celiac herself, but that by excluding gluten all these years, she is in remission from both. Could be!!--she's in better health than I am.

[LM18]

Late stage/ chronic Lyme can cause both brain lesions and textbook Celiac disease symptoms. 

[Emsybell]

Hi!  I am brand new to this forum, and to the world of celiac in general, and was FASCINATED to find this chain.  I was diagnosed with an inoperable left temporal lobe brain lesion (DNET tumor) 5 years ago, and am now newly diagnosed with celiac.  I would LOVE to know more about a connection.

[LM18]

Late stage/ chronic Lyme can cause both brain lesions and textbook Celiac disease symptoms. 

 

Update:

It may seem like a weird connection, but I was just looking at an article called "Inflammatory brain changes in Lyme borreliosis" that found brain lesions with Borrelia burgdorferi colonies in late-stage Lyme patients.

Dr. Richard Horowitz noted in his book "How Can I Get Better" that most of his chronic Lyme patients lack the Celiac gene, but have progressively worsening symptoms mimicking Celiac disease.

Before I got Lyme I had, if anything, a mild gluten sensitivity that I never identified. Since getting Lyme I've had increasingly strong reactions. After my last gluten exposure I spent a week with nausea so bad some days I had a hard time keeping down water.

I get that there are other causes of Celiac disease. Lyme just seems to be a trigger in some cases. So if you're having trouble making headway on mamaging your symptom constellation it might be worth learning more about Lyme.

[Foxbat]

My son was diagnosed with a DNET (occipital cortex) 2 years ago and because he was having seizures he was screened for coeliacs and found to have it also. Maybe there is an association between the 2 diseases?

[Geoff01]

On 6/19/2011 at 4:58 PM, Takala said:

I am/was one of the people with brain lesions and neurological symptoms resembling MS. It wasn't.

 

How do I know this. Because by changing my diet, I regained much balance, and the feeling in my hands, arms, shoulders, feet, calves, and my vision improved dramatically, and I am no longer partially color blind in one eye nor almost night- blind.

 

I had the spinal tap thing test for MS back in the early 1980's, and it was negative. But because by then my cervical (neck) spine was a piece of ****, arthritic, and I already had stenosis and bone spurs, they tried blaming it on that, with the "possibility" of it being or turning into MS.

 

These symptoms got much worse about a decade ago (aka 20 years later) and after screwing around with the uncaring and incompetent Name Brand 'Live a Healthy Lifestyle' HMO in the state of CA (Don't, for the Love of God, voluntarily select a HMO for your insurance, if you have a choice) my spouse convinced his boss to offer the option of different insurance and I started messing around with different doctors trying to get this further diagnosed. This led to a year long interlude with the Neurologist From H*ll, who first acknowledged that there was something indeed wrong, but who eventually reneged after going down the wrong trail and attempting to misdiagnose me and then trying to cover it up. The finale was my sitting there looking at her, as she told me there was nothing wrong with me and that I was basically a head case, and that diet had no relationship to my symptoms, even tho her office had called me up and told me the (freaking MRI) scan showed brain lesions AND I had gotten copies of the other test showing that Yes I Still Had Spinal Stenosis.

 

I know they really hate people who research stuff on the internet, but give me a break, for once. Because she was also contradicting the more competent docs I had seen decades earlier who at least said "wow that's a bad spine for your age, you should be sucking down the supplements with that." If you are going to make me fill out pages and pages of medical history, at least read the back story and the x rays.

 

I went back to another PCP and ratted out the Bad Neuro, and told the guy Hell Was Freezing Over before I ate gluten again, since he had seen the scan results and I'm still upright, ambulatory, and better than before, he humors it. But I don't have a positive bloodwork to show anyone and I've not been biopsied. I don't really need a genetic test because I am from of all the ethnic groups more likely to get celiac, northern European/Indigenous mixed, I have the light skin, I was born strawberry blonde (duh ! and did the grey come in darker, yup, what is with that ?) and I'm pretty sure I'm third generation but the others smoked tobacco (which is supposed to act as a preventive, they have recently discovered.) If this country could stop being so eager to discriminate, I am sort of curious if I'm in the rarer category of just having the gluten intolerant genes.

 

At first, I ditched all grains entirely and most dairy and went to a modified Specific Carbohydrate Diet minus the yogurt. I was motivated to expand that after we lost electricity for the better part of a week in the winter, which meant that I needed to transition to be able to eat something non perishable in emergencies. (learned my lesson on that one, now I know I can go a long time on peanut butter.) I am still not very grain/carbohydrate tolerant, nor can I do much sugar, which is a shame because I'm good at baking and like to experiment, but I'm really good with ground almonds and blessed to not mind bean flours.

 

I disagree with the doom & gloom scenario. Stick to the gluten free diet. If my neuro symptoms could improve, certainly this is possible for other people's.

 

Almost forgot, have to constantly work on my sense of balance with exercises so I look normal. This is a very fatiguing auto immune disease at times.

 

Here is another article on bright spots and celiac- note how he explains the lesions are not the same as the MS ones. Okay, site did not like the link, so do a google search on this phrase in an ezine article

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

 

 

 

There are lots of studies of the neurological impact of eating gluten (you can get the back articles from 2006 and earlier for free, by registering) and also do searches on PubMed using these titles as search terms

Journal of Neurology, Hadjivassiliou, "Gluten sensitivity as a neurological illness" link Open Original Shared Link

Great Advice!  Also see Dr Hajivassiliou on YouTube and search out from there. It’s a great resource.  Research, become an expert. Most doctors don’t have the training to help us.  I have UBOs that look like migraine caused, cerebellum damage verging on ataxia, neuropathy in my hands and feet, obviously from years of damage AND celiac gut reactions that came on only in the last few years.  Hoping that a strict GFD will at least halt the advance.