Healing The Celiac Brain, Can It Be Done ?

[marciab]

I've obviously had some brain issues caused by gluten since I have been able to give up my Klonopin by going gluten free. I was taking it for nocturnal myoclonous (NM) diagnosed via a sleep disorder clinic back in 1990. FYI, NM is uncontrollable jerking while sleeping.

I found info on mindscience.org about feeding the brain and info on this site about the problems with gluten and the brain, but, is there any info on the net about healing the celiac brain ?

My brain just stops working sometimes. I almost burned my house down 3 times this past week.

Or is it just a matter of time ? I'm going to be 51 this month, yipes.

Thanks Marcia

[utdan]

Just a thought, have you tried a couple weeks on the Specific Carbohydrate Diet? I found it helps a lot and I might do it the full 1-2 years.

[Kaycee]

I am sure the brain heals. Beofre my diagnosis I was really struggling to do a puzzle called sudoku, do you have them there? It is a puzzle with numbers in and you have to figure out the missing numbers. Even on the easy ones, I got lost and confused and made big mistakes. I was telling myself, I am just getting past trying to retain the ability to sort out problems. I just cannot do it anymore. It was a bit disconcerting, but I put it down to getting old.

My problem seemed to be in retaining anything in my head, so that I could work out the next bit of the problem. So the process of elimination was so much harder.

I never seemed to loose the ability to do a crossword, as I always think of other words when words are thrown at me. I think even there I am getting better.

But now, as in last night after not doing a sudoku for 5 months, I whizzed through about 6 easy sudokus without even a mistake. When I did make a mistake it was fixed immediately, as I knew I had done it wrong.

I hope this gives you confidence that things do get better.

[KerriAnne]

Here's some scientific info that I could find (fyi: I'm a graduate student in pharmacology studying psychiatric disorders). There seems to be little consensus with regard to whether a gluten-free diet improves neurologic problems that co-occur in a celiac patient. Information on memory impairments & celiac disease was very limited, but here are a few pieces of information I found from scientific journals on other neurologic symptoms.

From the journal "Gastroenterology" in 2005 article by K.O. Bushara titled Neurologic presentation of celiac disease

"Celiac disease long has been associated with neurologic and psychiatric disorders including cerebellar ataxia, peripheral neuropathy, epilepsy, dementia, and depression....more recent studies have emphasized that a wider spectrum of neurologic syndromes may be the presenting extraintestinal manifestation of gluten sensitivity with or without intestinal pathology; These include migraine, encephalopathy, chorea, brain stem dysfunction, myelopathy, mononeuritis multiplex, Guillain-Barre-like syndrome, and neuropathy with positive antiganglioside antibodies."

"Studies of gluten-free diet in patients with gluten sensitivity and neurologic syndromes have shown variable results. Diet trials also have been inconclusive in autism and schizophrenia, 2 diseases in which sensitivity to dietary gluten has been implicated."

by A.J. Willis The neurology and neuropathology of coeliac disease in Neuropathology and Applied Neurobiology from 2000:

"A number of neurological syndromes have been described in association with coeliac disease. These include disorders of the central nervous system encompassing epilepsy, myoclonus, ataxia, internuclear opthalmoplegia, multifocal leukoencephalopathy and dementia. Most of these associated conditions show a poor response to gluten restriction. Peripheral neuropathies, of axonal and demyelinating types, have also been reported and may respond to elimination of gluten from the diet."

Note that the co-occurrence of neurologic or psychiatric disorders with celiac disease does not mean that celiac disease or gluten ingestion CAUSES these other disorders. Therefore, whether these symptoms improve on a gluten-free diet may be quite variable. I'm happy to help in understanding some of the scientific literature if you have questions.

(I love Sudoku puzzles!!! I'm slightly addicted. )

[ravenwoodglass]

I had severe neurological impairment due to the celiac. It took a while for my neuropathies to go away and for my ataxia to improve (not gone but liveable I can walk now) and for my memory function to return to normal but they did. It took about 6 months to see a noticable improvement but the day I ran up the stairs without thinking about it I cryed like a baby at the top. I am not 100% but after 45 years of misdiagnosis I don't really expect to be perfect. There is a lot that is still unknown about this poisons effects on the nervous system but don't give up. You will most likely see more improvement than you think you will. I should note that I had to be very, very, very diligent in excluding gluten from everything before I began to improve neurologically so make sure you check toiletries and lotions etc.

[marciab]

Thanks for replying. This is a very emotional time for me. I had no idea that I would actually make this kind of improvement. It's going to take awhile before I can believe it. It's not coming back, is it ?

It is so reassuring to hear that others have healed too. And I can look forward to doing sudokus.

Today was a little better. I remembered to stay in the kitchen while I had a pan on the stove.

I saw where omegas (fats) are critical for brain function, but do you know of anything else that is known to help / heal the brain ?

[KerriAnne]

Is your particular concern improving your memory?

[marciab]

I'm still tripping over the fact that I am not jerking any more. I was on meds for 16 years. And I was jerking during the day as well as while I was sleeping. It is just that the night time jerking was documented in a sleep disorder study. So, I knew exactly what that was.

Right now, I want to make sure that it is not going to come back. I don't know what happened to my brain, but I am concerned that it is something that can happen again if I am not careful.

Weaning off Klonopin wasn't easy for me physically. I started weaning myself from the meds because they started making me feel drugged during the day. That was after being on the gluten free diet for about 6 months.

Then, it took me 2 months to wean myself off of the last 1/4 of a .5 mg tablet. I had to reduce the dosage very slowly or else I would felt jittery, unsteady and sickly. If I felt too bad, I would go back up on the dosage and try it again when I was ready. I knew it was time to reduce the dosage again when I no longer felt jittery during the day and I was sleeping 7 - 9 hours at nite. When I finally took the plunge and gave up the last little bit of Klonopin, I felt jittery for about 5 days straight. But no jerking, so I didn't take anymore.

That is why I wanted to do what I could to help it heal. Make sense ??

I would like focus long enough to cook a meal though ...

[Nancym]

I found taking B vitamins helped (I think, maybe it was just lack of gluten that helped). I take a B complex and then sublingual B-12.

[KerriAnne]

I'm still tripping over the fact that I am not jerking any more. I was on meds for 16 years. And I was jerking during the day as well as while I was sleeping. It is just that the night time jerking was documented in a sleep disorder study. So, I knew exactly what that was.

It sounds like you are making very good progress actually. It can be tricky getting off drugs like klonopin as you must wean off slowly, like you did, and it can definitely take some time to be completely drug and symptom free. You are wise to take one day at a time... relish in the things you can do today that you couldn't do yesterday. Keeping a list of these things my help encourage you when you have bad days. I would be very careful with your diet since at least some studies do seem to show improvement with the gluten-free diet. It looks like you've had a quite restricted diet for some time though so I suppose you are very on top of the foods you eat.

Anyhow, good luck. I hope you have many successful cooking days! I'll let you know if I come across any more research that may be helpful.

[Guest nini]

I had the "jerking" for years and was told that was part of my "non specific seizure disorder"

it took about six months of being gluten-free for them to go away completely but they do come back when I'm accidentally glutened. Hubby said the jerking used to wake him up it was so bad. I also had small seizures during the day where it was like my brain would "reboot" and I would completely forget whatever conversation had just been going on...

[marciab]

Thanks for your replies.

I had a rough nite. I fell asleep at 12, then I jerked myself awake at 1:30 am and was up until 6 am. Along with the jerking, my brain doesn't know how to shut down and fall asleep.

I drank chamomile tea last nite. It at least gets rid of the anxiety.

I am fairly certain I wasn't glutened. I cook all my food from scratch.

But, I am in the process of re-introducing foods. Yesterday, I had eggs, soy, onions and garlic. Three new things too many ... I don't know why I keep trying eggs, they kill me

Does anyone know if other foods are known to cause myoclonous ? Or is this just a brain malfunction ?

The mind science website lists several nutrients crucial for the brain, but it also says :

"Studies have linked Choline to be essential in memory and cognition. It helps promote neuronal membrane fluidity, which is important for communication between brain cells, plays a role in repairing and maintaining neurons. "

Any ideas ?

[Guest nini]

when you went gluten-free did you change out all your old pots and pans? get rid of wooden spoons? cutting boards? collanders? toasters? are all of your personal care products gluten-free? what BRAND of chamomile tea did you use? (some are not gluten-free Celestial Seasonings will label gluten-free) just trying to narrow it down for you because I ONLY get the jerking when I've been glutened. And I DO get glutened in my own house even though I cook from scratch. My husband eats gluten and even though he's careful, he doesn't think of everything I do when it comes to cross contamination.

[marciab]

OMG, I bet you are right. My daughter is not gluten free so we still have it in the house all the time.

And I used her teflon coated egg pan to fry my eggs in.

Thanks for replying. I needed to hear from someone else who jerks too. Bizarre, isn't it ?

My doc would have put me back on the Klonopin.

I had been disregarding the cc issues, since I am still working on keeping the whole gluten out of my diet.

But, it makes sense that I would be more sensitive to it now and need to look closer.