Interest in Gluten Sensitivity and Seizure Disorders

[mackmiller]

The link between gluten sensitivity and seizure disorders is very interesting. My son was just diagnosed with a gluten sensitivity after weeks of stomach pains. His doctor doesn't believe in gluten sensitivity--just CD. I went and had a stool test and gene test done at Enterolab and it confirmed that he indeed has a gluten sensitivity and has not one but two gluten sensitive genes--one from me and one from my husband.

So now that I know that I have a gluten sensitivity too, I'm fascinated about the potential link between seizure disorders and gluten sensitivity. I've had a seizure disorder since 1997 and it's unexplained.

 

[RobinN]

Hi Mackmiller - Welcome to CWE
I am so glad that you made your post. I moved it so others would be able to welcome you. This is a discussion that is very interesting to me, because I believe nutrition and lack of it are creating most of the disease and disorders we are seeing in our society.

I think this gene runs in my family as well, but I am not sure for us that it is only gluten. I had a sensitivity to casein as a child, my son (24yr) is gluten sensitive or possibly has CD. My daughter has seizures and I had migraines for 30 yrs. I have not had the testing done, as I have heard sometimes it is unreliable. Interesting that the gene test that your son had can tell where the link comes from. I might be more tempted to have my son tested now. However the easiest test of all is just to eliminate gluten (and casein). IMO

I think we are just beginning to put these pieces together in the medical community. I have not met many conventional doctors that connect the two. Many parents are though. It makes so much sense to me. I was first introduced to the concept from a Vet that is a member here. His website goes into quite a lot of detail on the subject.
www.dogtorj.com

I look forward to more discussion on the subject. We have quite a lot of threads on the subject, you might be interested in reading.

 

[mackmiller]

Thanks Robin!

If you haven't checked out Enterolab and Dr. Kevin Fine, go to their website regarding the gluten sensitivity stool test. It is more reliable than a blood test which will only tell you if you have CD.

My mother had the blood test done and she does not have CD. However, I truly believe I got my gluten sensitivity gene from her since she has stomach problems and fibromyalgia-an autoimmune disorder which can result from CD or a gluten sensitivity. I don't know if she will do the stool test or not. She is not one to eliminate anything out of her diet; she would rather suffer!

-Melissa

 

[RobinN]

Hi Melissa - I do think you see the symptoms and intuitively know, even without the test. My son has eliminated the offenders and he gets relief. But then he goes out with friends and isn't careful, and he is back to square one. He doesn't see it as a long term solution yet.

I think the only thing the tests would do is make believers out of certain people in my family. My husband is a believer in all things in moderation. He allows side steps to be taken, and that doesn't help with seizure control. I can do just so much though.

As a believer in food sensitivities, I also have an intuitive sense that it is also the amount of refined carbs that we are eating. You can be GF and still have the majority of your diet be made of GF refined carbs. I don't think this is good nutrition. I think more emphasis needs to be place on a different nutritional pyramid. Doubt that will happen in the schools, so we need to make up our own. For us dairy had to be excluded. We have replaced it with rice milk, coconut milk and occasional goat products.

I am still far from where I would like to be in regards to the ideal daily nutrition. Learning on my own, and trying to figure out my daughters individual needs. My son is out of the house so he is on his own. I slip him links via email, and he is appreciative.

 

[KelVarQ]

Gluten Diet is working!!!

I think my seizures are caused by Gluten. Started having seizures again in May 09' after RTL surgery approx. 4 yrs. ago and I started the Gluten diet about a month ago (100% Gluten Free, no cheating!) and low and behold it's been 7 nights (today nocturnal CP's) and haven't had a seizure. I know it's still early, but I must say that I haven't gone more than 3 nights without seizing and it's been 7 nights now.
A couple other things that I did: Last week I completed the antibiotics for Lyme Disease (didn't know I even had it) and I take magnesium and vitamin B's, C's, and D's. Personally, I think it's the whole Gluten Free Diet but I'm not about to change anything else considering whatever it is so far so good. I also listen to the Delta Sleep System CD at night to relax my brain and it does work or at the very least put me to sleep. The Celiac Test did not prove 100% Gluten allergy, but my primary said the numbers were high out of 1-10 I scored 5 and felt that had I ate a bowl of pasta prior to the test it would've come back positive, but I had already be dabbling with a Gluten Free Diet and now I'm 100% Gluten Free and no seizures for 7 nights in a row! Very excited today...again, not a long time, but definitely improving : )

 

[Nakamova]

Kel -- that's great news!

Mackmiller -- welcome to CWE! As you can see it's a special community -- real people with practical personal information about seizure disorders, plus a ton of support.

Best,
Nakamova

 

[mackmiller]

My son came home from school today, and told me that he didn't eat his lunch. He was just so mad today that he is gluten sensitive. I feel bad for him. He is only 10. I made him a great lunch too! Great GF chicken pattie with honey mustard on Glutino's flaxseed sandwich bread (it's OK-not crumbly).

It will be a struggle for him; but we'll manage.

 

[jessicasdad]

Cutting Gluten works..

I think my seizures are caused by Gluten. Started having seizures again in May 09' after RTL surgery approx. 4 yrs. ago and I started the Gluten diet about a month ago (100% Gluten Free, no cheating!) and low and behold it's been 7 nights (today nocturnal CP's) and haven't had a seizure. I know it's still early, but I must say that I haven't gone more than 3 nights without seizing and it's been 7 nights now.
A couple other things that I did: Last week I completed the antibiotics for Lyme Disease (didn't know I even had it) and I take magnesium and vitamin B's, C's, and D's. Personally, I think it's the whole Gluten Free Diet but I'm not about to change anything else considering whatever it is so far so good. I also listen to the Delta Sleep System CD at night to relax my brain and it does work or at the very least put me to sleep. The Celiac Test did not prove 100% Gluten allergy, but my primary said the numbers were high out of 1-10 I scored 5 and felt that had I ate a bowl of pasta prior to the test it would've come back positive, but I had already be dabbling with a Gluten Free Diet and now I'm 100% Gluten Free and no seizures for 7 nights in a row! Very excited today...again, not a long time, but definitely improving : )

Hi, I'm new here, but I have to say that our daughter has been seizure free for nearly three months since we took 100% Gluten out of her diet, with the exception of one night when my wife inadvertently cooked with a sauce that had MSG in it, then for that night only she had eight seizures, but each one only 15-30 seconds in duration, and she did not remember them next morning, when she awoke.

WE are thanking God for this advice and keeping her gluten free no matter what, my wife has also cut gluten from her diet, and she feels better.... so maybe they are both gluten intolerant?

BTW, we dealt with the attacks very well using LIQUID TAURINE and LIQUID MAGNESIUM which we dropped into her mouth if she fitted, it stopped her fits in 30-60 seconds from the time of administration, provided we got them before they took total control.

Jessica suffered attacks from her third birthday until now, when she is eight years old.

I know it's too early to say she is clear of them, but after three months of perfect sleep (she fitted only at night) I feel hopeful and thankful.

Jessica has her own page if you want more details which I cannot post as I am a newbie, but if you want to visit, go to http://hubpages.com/hub/Epilepsy-Jessicas-story

Stay Blessed...

John
jessicasdad

 

[Sofijakalinovska]

How long did it take to see results after eliminating gluten?
Our dd is gluten free for 4 months, we see no difference. Is it enought to tell if her seizures are not related to gluten?