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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!
| Post a reply to this message, or post a new topic |  |
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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
|
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
|
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
|
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.
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| epilepsy, seizures and gluten
| Posted by Peter
|
As you suggest, there is a possibility of a link to gluten / coeliac condition.
Your report back will be most useful.
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| epilepsy, seizures and gluten
| Posted by JACKIE
|
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 !!!!!.
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| epilepsy, seizures and gluten
| Posted by jackie
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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
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| epilepsy, seizures and gluten
| Posted by LJM Spillane
|
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.'
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| epilepsy, seizures and gluten
| Posted by Lisa
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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
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| epilepsy, seizures and gluten
| Posted by Kristine
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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
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| epilepsy, seizures and gluten
| Posted by Marsha
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I was diagnosed with seizures when I was 19, nearly 13 years ago...I struggled off and on for years before maintaining seizure free condition for 7 years on a very small dose of Topamax.
Four years ago, I was diagnosed with Celiac via a blood test. I have maintained a strict gluten free diet for those four years and all along suspected that the gluten caused the seizures.
Today a new Dr. told me I am siezure free and wants me to go off the medication completely.
I am convinced there is a strong correlation between gluten intolerance and some seizures. I would love to go back in time and let my 19 year old self know that. Obviously not ALL seizure disorders will be helped with a gluten free diet, but mine has. I will now embark on taking myself off drugs (Dr. Suggested) and seeing how that goes.
There needs to be more research in this area, but patients must learn to be their own best advocate now. Drug companies give too much money for Dr.s to overlook.
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| epilepsy, seizures and gluten
| Posted by
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Wow I am just discovering about gluten and seizures and it works alleluia
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| epilepsy, seizures and gluten
| Posted by Marianne Hauck
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Dear Karen,
Our daughter is 8 and she started having seizures when she was 4. We have been thru everything!!!
We went to CHOP for a few years and found that they take a very narrow view....not the whole picture of the child....and were asking us what we thought we should do with her case!!!
We now see a doctor in New York how is more open minded.
I just started doing the gluten-free diet and swear it is already helping. For several days she has had no seizures and not complaints of her stomach hurting....which she usually complains about every day!
Keep you posted
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| epilepsy, seizures and gluten
| Posted by Allison
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I rarely post on any message board but I am so excited to find this thread! We have an almost 4 year old son who was just recently seen at the Children's Hospital in Denver for what we think is absense seizures. An EEG revealed some abnormal brain activity in the occipital lobe, and the neurologist ordered an MRI for further testing. In the meantime, however, they suggested that we begin our son on daily doses of Lamotrigine (Lamictal) as a means to subside the seizure activity. My husband and I have extreme reservations about putting him on this medication, especially since no formal diagnosis has been made.
We implemented some dietary changes based on our own research on childhood seizure disorders and noticed that after only two weeks of gluten-free eating, we have not seen a single seizure occur. I will post again after more time passes to see if we are still on this positive trend.
We have discussed the possiblity of asymptomatic celiac disease with our neurologist and she remained insistent on the pharmaceutical treatment. We are seeking a second opinion.
PLEASE read, research and ask questions before medicating your children! I will certainly post again when more information is available.
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| epilepsy, seizures and gluten
| Posted by Tara
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There's a lab that does good work with celiac testing - www.enterolab.com
My daughter has CD. At age 14, she had her first grand-mal seizure and another one 3 weeks after the first. We took her off gluten (made our household entirely gluten-free) and she had no seizures for 4 years - until she went to college. She roomed in an apartment on campus with 4 girls - sharing a kitchen. We believe the cross-contamination caused another seizure because we subsequently moved her into her own place and she's been good for the past year. She's never been on any medication. The neurologist believes she has a very low tolerance threshold for gluten.
It is easy enough to get the testing and try the diet. I think the stool tests are most sensitive and its easy to verify the presence of the HLA DQ2 and or HLA DQ8 gene - a simple swab of the inside of the cheek.
In my experience, most physicians know very little about CD. They still think it presents as only a digestive disorder and that very few people have the disease. Dr. Fassano has done some really good research and wrote a good article in the August 2009 Scientific American magazine. Also, the book "Dangerous Grains" is a very good read.
I think gluten induced seizures are much more common than people think and in the near future - the medical community is going to FINALLY figure this out and get these children off these dangerous medications and put them on gluten free diets
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| epilepsy, seizures and gluten
| Posted by Tara
|
There's a lab that does good work with celiac testing - www.enterolab.com
My daughter has CD. At age 14, she had her first grand-mal seizure and another one 3 weeks after the first. We took her off gluten (made our household entirely gluten-free) and she had no seizures for 4 years - until she went to college. She roomed in an apartment on campus with 4 girls - sharing a kitchen. We believe the cross-contamination caused another seizure because we subsequently moved her into her own place and she's been good for the past year. She's never been on any medication. The neurologist believes she has a very low tolerance threshold for gluten.
It is easy enough to get the testing and try the diet. I think the stool tests are most sensitive and its easy to verify the presence of the HLA DQ2 and or HLA DQ8 gene - a simple swab of the inside of the cheek.
In my experience, most physicians know very little about CD. They still think it presents as only a digestive disorder and that very few people have the disease. Dr. Fassano has done some really good research and wrote a good article in the August 2009 Scientific American magazine. Also, the book "Dangerous Grains" is a very good read.
I think gluten induced seizures are much more common than people think and in the near future - the medical community is going to FINALLY figure this out and get these children off these dangerous medications and put them on gluten free diets
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