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Can Gluten Free Diet Help In Treatment Of White Matter Disease?

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Posted on Tue, 3 Jun 2014
Question: My brother, age 60, has advanced White Matter Disease, diagnosed 3 years ago when I saw that he was very changed and took him to my physician, wo sent him to UCSF's Dr. XXXXXXX DeMay, head of Neurology. XXXXXXX a former Phi Beta Kappa from Cal, former attorney, showed strange symptoms by age 25 when he did financial things that were strange. This continued throughout his adult life, but he claimed that he didn't know why he did these things. 3 years ago he had a BP of 206/106 and 303 Cholesterol. My own physician had immediately, 3 years ago, put XXXXXXX on meds, which put him under BP and cholesterol control. He also had very low B12 at that time, which is in range now. Today XXXXXXX has progressive total short term memory loss and is losing much of his long term memory. COULD A GLUTEN FREE DIET HELP HIM?
doctor
Answered by Dr. Vinay Bhardwaj (5 hours later)
Brief Answer:
Do you mean Vanishing White matter Disease?

Detailed Answer:
Hello, Thanks for coming to HealthCareMagic. I am so sorry to hear about your brother. Just so I can wrap my head around the problem and understand whats gong on.. i need to nail down your brothers diagnosis properly.

When you say 'White Matter Disease" do you mean

1) Vanishing White Matter disease?
2) Progressive multifocal leukoencephalopathy? (PML for short)
3) Multiple Sclerosis (though I doubt it because you would have said that straight off)
4) Early Onset Alzheimer's

Each disease has it's own management and courses of actions.

It would probably be best if you could upload his scans or medical records and I could go through them to get a better handle on what we are discussing here.

To try and answer you question on gluten free diets in a broad sense. The answer is "probably not".

Firstly, there is ongoing research into the idea that Gluten sensitivity may not be a real thing in the absence of celiac diease.

http://www XXXXXXX com/sites/rosspomeroy/2014/05/15/non-celiac-gluten-sensitivity-may-not-exist/

But thats neither here nor there.

Overall, the idea that the inflammatory products released during the metabolism of gluten worsening a neurological process is a tough connection. Because our brain is protected from most of what goes on in the Body by something called the "Blood Brain Barrier".

That is a physical set of connections between the cells in the blood vessels of the brain that prevent lots of chemicals / molecules from crossing over into the blood supply of the brain. This exists to protect neurons as they are pretty sensitive and need very specific conditions to d their job.

If you want more empirical data.. There have been a few studies done on the subject.. not nearly enough to have a "definitive" answer with a string predictive power though

http://www.ncbi.nlm.nih.gov/pubmed/0000

The above study basically concludes that gluten free diets didn't significantly help patients with White Matter problems (key word is 'significant'..)

Probably the best way to test your theory is to try it out. If your brother agrees to it, you can go gluten free for say... 3 months and see if there is any improvement.. it would certainly do no harm... And it would help his blood sugar stabilize and even help his blood pressure to a certain extent.

I am a proponent of eating whole and unprocessed foods in general, the idea of a Gluten Free diet appeals to me. But I just cant see that it would help significantly in any white matter disease.

I hope this helps, Let me know what you are thinking. I wish you and your brother the best. Feel free to follow-up.

Vinay


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Vinay Bhardwaj (6 hours later)
Hi Vinay! Thank you! XXXXXXX does not have MS or Alzheimer's-- since age 25 he has been unable to handle "financial matters", and did strange things with money. It appeared that he had obsessive-compulsive disorder and went 20 years to a psychiatrist, but in fact, this was NOT what he had! We did not understand that there was a neurological problem as no doctor told us. Such a mystery for us! It progressed, and he lost his business, his law practice, his wife. Brilliant, yet we could not figure this out for 30 years until the neurologist tested him at length, explaining that he has White Matter scattered in his brain, causing this, seen on 2 brain scans. His spinal fluid showed "junk", but further tests were negative for other diseases. He had no B12 in his body, almost! XXXXXXX functioned somewhat ok while living with us, until 4 years ago when he failed to inquire or show interest in his children's activities (very unlike him) and repeated himself constantly. He "forgot" to pay his children's high school tuition 10 years ago, lived with unpaid bills for several years, incapable of writing checks or following through when it came to money, and was incapable to organize his home. This has progressed in the last 3 years to a dramatic memory loss. I believe the diagnosis was Vanishing White Matter Disease. There was an Internet description from a Canadian doctor online, who had studied White Matter, who could have been talking about XXXXXXX His gait is unsteady, his recall poor, food choices impossibly poor, no sense of right or wrong, lost his social understanding of what is appropriate. (Thinks it is ok to pee in the street) I spoke to Dr. DeMay recently who said there is no fixed course of the progression of this disease- it varies from person to person. What do you think? Is there ANY med to slow this down? Thank you! XXXXXXX

XXXXXXX XXXXXXX does not have Vanishing WMD. He has frontal-temporal dementia. He has personality changes, loss of insight, loss of empathy, no self- care, and we think he may have had mini- strokes, as his high blood pressure was untreated for several years, as he never went to a doctor! For me, his sister, it has been a nightmare, especially in the early years when he did so many strange things with money. I am too tired tonight to look up exactly the explanation of the diagnosis, but White Matter Disease was the diagnosis. As of a month ago, I moved him out of my home and in with a great caregiver. She takes him everywhere, from baseball games to dancing every weekend to movies and bowling, and daily walks! And he comes to me weekly when we are not traveling to our parties and overnights. I just wish I could improve his functioning somehow! XXXXXXX
doctor
Answered by Dr. Vinay Bhardwaj (6 hours later)
Brief Answer:
Frontotemporal Dementia is it's own disease proces

Detailed Answer:
Hi XXXXXXX I can't begin to imagine how frustrating it must be to manage issues like this. I've seen plenty of people stricken down due to FTD secondary to Head injuries.. drug use.. infections.. autoimmune diseases.. etc. It doesn't really matter what causes it. What matters is the process.

From what you have described here.. it sounds like there isn't much that will be possible to reverse his condition. He will need a permanent care giver and unless the Blood pressure issues are managed.... the XXXXXXX strokes will make things worse (if they have been causing issues already).

As far as the behavioral issues.. there is some evidence to show that Selective Serotonin Reuptake Inhibitors (SSRIs) can help with the impulsive behaviour and mood swings. I know that these drugs are commonly prescribed anti-depressants.. but we are not using them to treat depression in this case... we are trying to increase the amount of serotonin in the brain to make up for the loss from Neuronal degeneration.

So it might be a good idea to talk to your neurologist about SSRIs.

Another medication that can be considered is the use of an Antipsychotic medication called Olanzapine... I saw this used on ONE patient when I was a resident. This was a patient who had developed FTD from a head injury and was having violent outbursts. I really don't like the idea of giving it. i can't explain why it works.. but un desperate situations.. you should have all your options available.

As far as improvement of function. Try the SSRI's.. thats the only set of meds that are proven to work.

Hope this helps.

Vin

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Vinay Bhardwaj

Neurologist, Surgical

Practicing since :2006

Answered : 544 Questions

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Can Gluten Free Diet Help In Treatment Of White Matter Disease?

Brief Answer: Do you mean Vanishing White matter Disease? Detailed Answer: Hello, Thanks for coming to HealthCareMagic. I am so sorry to hear about your brother. Just so I can wrap my head around the problem and understand whats gong on.. i need to nail down your brothers diagnosis properly. When you say 'White Matter Disease" do you mean 1) Vanishing White Matter disease? 2) Progressive multifocal leukoencephalopathy? (PML for short) 3) Multiple Sclerosis (though I doubt it because you would have said that straight off) 4) Early Onset Alzheimer's Each disease has it's own management and courses of actions. It would probably be best if you could upload his scans or medical records and I could go through them to get a better handle on what we are discussing here. To try and answer you question on gluten free diets in a broad sense. The answer is "probably not". Firstly, there is ongoing research into the idea that Gluten sensitivity may not be a real thing in the absence of celiac diease. http://www XXXXXXX com/sites/rosspomeroy/2014/05/15/non-celiac-gluten-sensitivity-may-not-exist/ But thats neither here nor there. Overall, the idea that the inflammatory products released during the metabolism of gluten worsening a neurological process is a tough connection. Because our brain is protected from most of what goes on in the Body by something called the "Blood Brain Barrier". That is a physical set of connections between the cells in the blood vessels of the brain that prevent lots of chemicals / molecules from crossing over into the blood supply of the brain. This exists to protect neurons as they are pretty sensitive and need very specific conditions to d their job. If you want more empirical data.. There have been a few studies done on the subject.. not nearly enough to have a "definitive" answer with a string predictive power though http://www.ncbi.nlm.nih.gov/pubmed/0000 The above study basically concludes that gluten free diets didn't significantly help patients with White Matter problems (key word is 'significant'..) Probably the best way to test your theory is to try it out. If your brother agrees to it, you can go gluten free for say... 3 months and see if there is any improvement.. it would certainly do no harm... And it would help his blood sugar stabilize and even help his blood pressure to a certain extent. I am a proponent of eating whole and unprocessed foods in general, the idea of a Gluten Free diet appeals to me. But I just cant see that it would help significantly in any white matter disease. I hope this helps, Let me know what you are thinking. I wish you and your brother the best. Feel free to follow-up. Vinay