226.epilepsy, seizures and gluten Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 2

epilepsy, seizures and gluten: from judy on 2007-01-22

WOW !! what a great site someplace that really covers everything celiac! I too was having some kind of seizures and a very irrating shaking hand.I was told my one dr I had a seizure while i was having a eeg .I did not even know.This did help with a few other things to point a great dr to know what to look for and found my celiac.I just found out in july and I have stopped the shaking and passing out for over 2 months since i have been on my diet. my family is so happy .I still have some trouble saying what i am thinking and saying words wrong and I a few other things but we are still trying to put everything in the right colum so to speak I also have sleep apnea and surgery induced medipause,( which had complications}.So it has been a little hard to point to something and say this from my celiac only but I hope to keep getting better very fast and I know now after over 15 years of trying to kind out whats wrong with me.

epilepsy, seizures and gluten: from JACKIE on 2007-05-01

I have taken good courage from your stories. Our son, now 4yrs old was diagnosed with Idiopathic Generalised seizures from 4 months old. He is currently receiving medical theraphy. His is reasonably controlled with seizures every 3 to 4 months. We are overly concerned as all the side effects of the medication is resulting in developmental and speech delay. Last Saturday night he had status epileptus and was admited to hospital overnight. Our Dr is now suggesting a rescue plan to include Clobazan every 3 to 4 months in line with his seizure free pattern to managed the build up of activities in the brain which causes the grand mal attacks. We are not happy with this suggestion and always keen to take onboard non medical alternative to his condition. I'm now going to consider this gluten-free alternative. Our Dr is dismissing his condition has any metabolic connection. As the last few episodes he had eaten alot of cheese and croissant during the day, I'm beginning to believe that the gluten-free diet is a key consideration in managing his condition going forward.

I would love to give you an update, but any suggestions or commets in the meantime, please let me know.

epilepsy, seizures and gluten: from June on 2007-05-03

I wish I had known about the possible link between wheat/dairy & epilepsy when our daughter(now 15) was younger. She had fits when she was born & then at school age developed night time epilepsy so was constantly tired during the day etc. Was put on a very high dose of Epilim for several years and has had to play 'catch up' with schooling ever since. I knew years ago that wheat could cause bloating etc, but never gave the epilepsy a thought. Hindsight is a wonderful thing!

However, on a positive note, said daughter is now doing really well at school, having been moved to one with v small class sizes.

If we could persuade the medical world to at least give us the opportunity to try the wheat free method for epilepsy, they could save millions of pounds and a lot of heartache from the incurred side effects.

epilepsy, seizures and gluten: from kay telford on 2007-05-13

My daughter who is now 22yrs was diagnosed with Benign Rolandic Seizures of Epilepsy in childhood when she was 9. She had never been ill until then and after being diagnosed had about another three seizures in the following 18 months. This type of epilepsy normally stops at puberty and no medication is required as it is a benign condition. She had no further problems until about 18 months ago when she was diagnosed with a rare neurological condition called palatal myclonus and blepharism which are related to distonia. With this the muscle at the back of her throat goes into spasm and you can hear a clicking noise all the time. In addition to this she had at times exacerbated blinking and involuntary movement of the tongue. There is no cure, but it is non life threatening and can be difficult to manage. We tried medication but this had no effect and eventually we attended an acupuncturist which had an amazing effect. She still has it, and it seems to get worse under stress, but she has now learned how to cope with it a lot better and it is not preventing her get on with her life.

We now have another issue to deal with; namely bouts of pain in the back and abdomen, followed by vomiting which has resulted in admission to hospital 5 times since January 2007. She has had an eating disorder for over ten yrs and admits her diet has been very poor and she has had periods of binge-eating, which may have contributed to her bowel becoming lazy and causing an obstruction. The distension in the stomach is however chronic and she appears to be about 9 months pregnant from the swelling. Even with her eating disorder, the x-rays she has had are as one of the drs observed, "unbelievable".

She is to have a colonoscopy tomorrow and a transit x-ray next week - a lot of her symptoms seem to indicate celiac disease and through the research I have done seems to indicate a connection with stress and neurological problems acting as a trigger to the condition.

I would welcome any feed back from this and will report on the test results when we get them.

epilepsy, seizures and gluten: from Peter on 2007-05-13

As you suggest, there is a possibility of a link to gluten / coeliac condition.
Your report back will be most useful.

epilepsy, seizures and gluten: from JACKIE on 2007-05-16

Further to my mention about our research on the Gluten diet we further established that there are a whole lot of other elements in food which are discreetly mentioned in food labels which are gluten based eg. gum, gelatinised starch etc.. As we are not enlisted to a qualified dietitian its worth being aware of these facts .

In addition there are other exotoxins which can lower epilepsy threshold eg. Exotoxins like Aspartame, sodium glutamate, aromotheraphy oils and some over the counter meds. These are readily available in every day foods, snacks and fruit drinks.

Please Look Out !!!!!.

epilepsy, seizures and gluten: from jackie on 2007-05-31

I am 40yrs old well actually 46 but whose counting? I had been diagnosed with cfs when I was in My 30"s and have been sick for a long time. Finally 2years ago I was diagnozed with coeliac disease and have not had as many seizures since on a gluten free diet. they leave you completely exausted emotionally and pysically too. My daughter has had problems too so we now try to live gluten free and this has been the best thing for us both. If your doctors say your not coeliac and you feel better without gluten get the blood test again. it took me 16years of blood tests and endoscopy which all pointed to not having the disease which now they say I have. so all the best and be well. p.s thankyou peter thomson for this website

epilepsy, seizures and gluten: from LJM Spillane on 2007-06-21

I developed idiopathic epilepsy at seven in 1947 and was off school two years, with 10-20 petit mal an hour and sometimes three grand mal a week. Petit mal are brief absence seizures, often with eye-rolling. Grand mal are 'drop' seizures in which I would fall to the ground. During puberty attacks became less frequent and until I reached the menopause, I only had occasional nocturnal seizures.

I am on a low dose of Epanutin. The generic formula is Phenytoin and its American equivalent is Dilantin. Epanutin is not recognized in the USA and I understand that the slow-release of Dilantin and Epanutin are different, although they are made up of the same substance. I can metabolize Epanutin, but Dilantin just sits in my system.

I lived in the USA for several years, completing my BA there and am in the process of my MA. I now only have seizures when I am under a great deal of stress, or as a result of sleep loss, but when I do, they come in "clusters" of grand mal that can last a day and wipe me out for a week. Then I will be okay for several months. I know when I am going to have one, because I become hyperactive for some days beforehand and rush to get everything done.

Last October I read of a woman who claimed to have stopped having seizures by going on a wheat-free-gluten-free diet and I decided to try it. I do not know if it will work for me and although I am recovering from a recent "cluster" of grand mal seizures, they appear to be a little less frequent and the hyperactivity factor seems less.

Please be aware that research into this, is very much in its infancy, but on the other hand the apparent success stories should not be discounted, but to all

those of you who have epilepsy for friends or family who have it - never give up

and don't 'over-protect.'

epilepsy, seizures and gluten: from Lisa on 2007-07-09

There is more and more evidence that gluten may cause seizures in certain individuals. It is probably a good idea for anyone with seizures to get an IGE allergy test and then a IGG intolerance test fro gluten and milk. I would also do the test for celiac itself. Gluten free and Milk free has helped our little one greatly. Lisa

epilepsy, seizures and gluten: from Kristine on 2008-07-12

Hi there we are just starting our daughter on GF/CF diet to try to control the infnatile spasms/hypsarrythmia. I have just been to 3 different stores and online researching all I can to give this diet a good try. There are so many alternate foods out there its amazing even a good multi vitamin without gluten. Take the time to educate yourself and get out there to see the many foods available for this diet. Our daughter was on the keto diet for 1 year and it was partially successful but she still has the eye rolls. I feel really positive that this will work for her and this diet is so much easier than the keto diet. Go for it