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Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intoleranceactioning query
| epilepsy, seizures and gluten
| Posted by susan collins
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I started to eliminate all gluten containing products from my diet, and seizures - both grandma and petit mal - have totally disappeared. This is a miracle for me. I have never posted a comment before on any site, but I have suffered since the age of seven, and I am now 53. My life is just beginning due to this new awareness. I am almost 100 completely off all medications, too. If you know of anyone who has a tendency to have seizures, I hope that you suggest to him/her that to eliminate gluten for 3 months and then check out the results. I appreciate the opportunity to post this comment, and I hope it helps someone!
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| epilepsy, seizures and gluten
| Posted by Peter
|
Susan
Thankyou for your message.
I have moved your message to start a new topic as I think it is an important one.
I have heard of gluten causing serious neurological problems, but it is rarely reported in the literature.
If anyone else has a similar case study to report, that would be useful information.
Peter
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| epilepsy, seizures and gluten
| Posted by Catherine Livingston
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I was very interested to read the email sent by Susan, as my son who is 17 months old, has just been diagnosed with a complicated form of epilepsy called West Syndrome. We are using an anti-epileptic drug called Vigabatrim to treat Andrew's condition (also known as Infantile Spasms) but Andrew has also been having Acupuncture. We have been recommended by the acupuncturist to give Andrew a diet free from wheat, dairy produce, sugar and artificial food colourings. Our primary concern is to reduce the spasms, but we do not wish to deprive Andrew of important nutrients in any way. Do you have any suggestions please? Could you direct me to any websites which would help me design weekly menus for Andrew? He eats whatever is put in front of him, fortunately, but has not yet progressed to finger food.
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| epilepsy, seizures and gluten
| Posted by Andrea Sorrentino
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I have never posted any kind of comment on any site as well like Susan--but I feel it is so important to let others know what we have experienced with our 5 yr. old daughter. She was diagnosed with epileptic petit mal seizures in 10/05 and we have started her on a gluten free and casein free diet since Feb 2006. We have seen dramatic decreases in her seizures and are so encouraged to continue to keep her on this diet and are beleiving in a total healing from her seizures. (We never put her any medicine). There are so many gluten free foods and products if you have a natural food store in your area which is very helpful when you son Andrew starts finger foods. Fruits and vegetables are great! The website feingold.org is a great website to get info even though it states its purposes for helping ADHD and Autism and if you put in gluten free casein free diet in your search engine--so many great websites are there for help and products you can order on line. We have been so blessed by so many people that have given us info that helped us reach this point. I will be praying for your son Andrew.
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| epilepsy, seizures and gluten
| Posted by Karen Frieman
|
I am so happy to see Andrea's above email (if you see this, please email me!) My son, Sam is 3 years old he had had frequent vomiting on and off for 2 years and was recently diagnosed with eosiniphilic esophagitis and has been going through extensive allergy testing.
About 1 month ago he began having petit-mal seizures and was diagnosed with childhood Absence Epilepsy by EEG. All of our Dr's are at CHOP(Children's Hospital of Philadelphia) and have been trying to convince us that there is no link between the 2.
Today our allergist just recomended starting a wheat, oat, soy and dairy free diet.
I am very intetrested in any additional feedback anyone can offer.
Thank you!
Karen
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| epilepsy, seizures and gluten
| Posted by Peter
|
Papaer from medical literature
Pratesi R ; Modelli IC ; Martins RC ; Almeida PL ; Gandolfi L
Affiliation Department of Pediatric Neurology, Brasilia University Hospital, University of Brasilia, Brasilia DF, Brazil. riccardoop -at- abordo.com.br
Title Celiac disease and epilepsy favorable outcome in a child with difficult to control seizures.
Source Acta neurologica Scandinavica. (Acta Neurol Scand) 2003 Oct; 108(4) 290-3
Additional Info Denmark
Standard No ISSN 0001-6314 (Print); 1600-0404 (Electronic); NLM Unique Journal Identifier 0370336
Language English
Abstract We report the case of a child with difficulties to control epilepsy and celiac disease, diagnosed soon after the onset of the seizure disorder. Seizure frequency and pattern, in addition to electroencephalogram record were suggestive of Lennox-Gastaut syndrome. Diagnosis of celiac disease was determined by positive anti-endomysium and anti-transglutaminase tests, and abnormal jejunal biopsy. Gluten-free diet, started soon after the diagnosis, led to progressive seizure control, allowing significant decrease in dosage of anti-epileptic drugs. This case corroborates the importance of serological screening tests for celiac disease, at least in patients with difficult to control epilepsy.
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| epilepsy, seizures and gluten
| Posted by Peter
|
Another paper from medical literature
Mavroudi A ; Karatza E ; Papastavrou T ; Panteliadis C ; Spiroglou K
Affiliation Department of Pediatrics, 3rd Pediatric Clinic, Division of Digestive Diseases, Aristotle University of Thessaloniki, Hippokration Hospital, Thessaloniki, Greece.
Title Successful treatment of epilepsy and celiac disease with a gluten-free diet.
Source Pediatric neurology. (Pediatr Neurol) 2005 Oct; 33(4) 292-5
Additional Info United States
Standard No ISSN 0887-8994 (Print); NLM Unique Journal Identifier 8508183
Language English
Abstract Celiac disease is a gluten-sensitive enteropathy, which recently has been described in association with epilepsy or other neurologic disturbances. This study describes a case of a 7-year-old female with intractable-to-treatment epilepsy and late-onset celiac disease, who was treated successfully with a gluten-free diet plus antiepileptic therapy. It is important for children with intractable cases of epilepsy and weight loss to undergo screening for celiac disease.
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| epilepsy, seizures and gluten
| Posted by Peter
|
Third paper from medical literature
Vaknin A ; Eliakim R ; Ackerman Z ; Steiner I
Affiliation Department of Neurology, Hadassah University Hospital, Jerusalem, Israel.
Title Neurological abnormalities associated with celiac disease.
Source Journal of neurology. (J Neurol) 2004 Nov; 251(11) 1393-7
Additional Info Germany
Standard No ISSN 0340-5354 (Print); NLM Unique Journal Identifier 0423161
Language English
Abstract BACKGROUND Celiac disease (CD) is a gluten-sensitive enteropathy in genetically susceptible individuals. Anecdotal reports suggest that the nervous system might be affected in the disorder, but the severity and prevalence of such an involvement have not been systematically evaluated. MATERIALS AND METHODS Analysis of files of CD patients diagnosed between 1980 and 1999 for neurological abnormalities. Diagnosis of CD was based on the modified criteria of the European Society for Pediatric Gastroenterology and Nutrition. RESULTS Of 148 CD patients, 18 (12\%) had 21 neurological disorders that could not be attributed to any other condition including muscle abnormality (3), epilepsy (3), psychiatric disease (4), peripheral neuropathy (3), cerebrovascular disease (1), myelopathy (1) and Down syndrome (2). Other disorders probably unrelated to CD were present in 8 patients. CONCLUSION If this association is not coincidental, both the central and the peripheral nervous systems may be affected in CD by a spectrum of neurological disorders that are either the outcome of CD or share the same pathogenesis with the enteropathy.
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| epilepsy, seizures and gluten
| Posted by LJM Spillane
|
I developed epilepsy in 1947, when I was seven. Whilst still in my high chair I became very fussy about food. By age six I had stopped eating.
My mother took me to the doctor, who was unsympathetic. A little while later I spent several days in hospital under observation and ate whatever was put in front of me. I was pronounced well and sent home. My mother asked why I would eat the hospital food, but not hers and it came out that the smell of food cooking, made me feel sick. When I was seven there was an epidemic of rubella at my school. I ran a high temperature and the next day had my first grand mal seizure. I was diagnosed with idiopathic epilepsy and put on medication. I had about three grand mal seizures a week and anything from ten to twenty petit mal in an hour. I did not return to school until I was nine and my epilepsy had begun to stabilize. As a young adult, I had stopped having petit mal and grand mal seizures were rare and nocturnal. When I was twenty-two, I spent three months with a family in Germany. I had never eaten a cooked breakfast, but whilst with the family I ate huge breakfasts - whatever was put in front of me, supplemented with lots of rye bread. When I returned to the UK and my diet changed again, I reverted to my previous way of not eating breakfast. I was still on medication and my epilepsy remained stable. About fifteen years ago my seizures increased to about ten a year. Ten years ago I was diagnosed with IBS, for which my UK doctor said there was no cure. I lived with it, but it got worse, until recently I heard of the wheat/gluten free diet. Two months ago I cut wheat from my diet altogether. I now have no IBS problems and I am hoping that one day I might be seizure free. I was much encouraged by Susan's post. My life has changed already, with the elimination of wheat.
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| epilepsy, seizures and gluten
| Posted by judy
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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.
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| epilepsy, seizures and gluten
| Posted by judy
|
|
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.
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| epilepsy, seizures and gluten
| Posted by JACKIE
|
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.
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| epilepsy, seizures and gluten
| Posted by June
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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.
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| epilepsy, seizures and gluten
| Posted by Pig in the kitchen
|
Hello, this is a response to the post from Jackie regarding possible alternative therapies for epilepsy.
During research for my allergy food blog I have learnt about the Ketogenic Diet. Matthew's Friends is a charity that has tons of information about this, their website is:
http://www.site.matthewsfriends.org/
I don't know if this will be of any use to you? I am not personally affected by epilepsy and hope you don't mind me putting my twopenneth in...
I'm passing on information I have learnt, not endorsing any particular treatment for epilepsy...
Good Luck.
Pigx
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| epilepsy, seizures and gluten
| Posted by kay telford
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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 ne | |