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
epilepsy, seizures and gluten: from Marsha on 2008-11-20
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.
epilepsy, seizures and gluten: from on 2009-03-12
Wow I am just discovering about gluten and seizures and it works alleluia
epilepsy, seizures and gluten: from Marianne Hauck on 2009-06-26
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
epilepsy, seizures and gluten: from Allison on 2009-10-14
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.
epilepsy, seizures and gluten: from Tara on 2009-12-27
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
epilepsy, seizures and gluten: from Terry on 2010-04-14
My son was recently diagnosed with absence seizures, age 6.
No other significant medical history.
Father is celiac as well as brother.
Is there a neurologist in New York or the surrounding area who is open to a gluten/casein free diet as treatment?
epilepsy, seizures and gluten: from Julia on 2010-07-22
Hello Catherine, my son has a rare form of epilepsy and had infantile spasms. We tried lots of medications, but nothing really worked. Now we are on a special diet called the ketogenic diet. Its a high fat and gluten free diet. We are also casein free. It has halved his seizures. Some children become seizure free. The diet can only be initiated with a neurologist and a dietician
epilepsy, seizures and gluten: from Bonnie LaFrance on 2010-10-19
My daughter (now 21) had a drop seizure which sent her to the doctor and then on to the neurologist. After testing they diagnosed her with Epilepsy, continuous absence seizures. They put her on Lamictal and at the last office visit the neurologist said that she was at 400mg with still signs of the absence seizures and that she doesn't like to go any higher than that dosage. My daughter has informed me that she has gone off the meds completely which I am concerned about. I want to have her tested for gluten/celiac problems to see if that is her problem. I am wondering if there is a problem in our family. I am 53 yrs. old and got treated for colon cancer in 2009. Some of my children (have 4) have digestive and eating problems. I always, myself, felt there were certain foods I couldn't eat. It is so hard and expensive to eat a gluten free diet today and especially hard for young people. Do you know the best way to go to have this checked out or to do it on our own? Glad you are making out great. Wish you had found it sooner
epilepsy, seizures and gluten: from Peter on 2010-10-19
In the UK, discuss this with your doctor. Your daughter should also discuss this with her consultant. I would expect that your doctor would do the basic blood tests immediately.
Tests for the coeliac condition should be done before you adopt a gluten-free diet as they later become unreliable .
Taken together the problems that your family have do suggest that there may be a common cause that is worth investigating, but this is no more than an increased chance of a reaction to gluten being related to the problems.
A gluten-free diet need not be expensive or plain. It just takes a little more planning to cook meals from the basic ingredients rather than buying pre-prepared meals