New Here! celiac disease & Epilepsy?

[Snap]

I have a two year old daughter who has Epilepsy and I always felt there was a deeper cause for her seizures. What started us on this dx was the fact that she kept getting sores on her butt that we were being told where staph infections. Well we did some allergy/intolerance testing and found out that she is allergic/intolerant to pretty much everything. Milk, soy, chicken, wheat, gluten, and food preservatives.

Her immuno doctor & gen ped (her neuro is on the same track too) is pretty sure that she has celiac disease and recommend that we discontinue wheat and glutens. I have to be tested and so dose her older sister as we could be asymtomatic for celiac disease (it dose run the family). We also found out that it could be the very cause of her seziures and the cure for them (hopefully)!

Thought I'd give a little intro!

Would be interested if there was any children or adults that have Epilepsy too!

[marciab]

I was never diagnosed with epilepsy, but I do have a history of nocturnal myoclonus (uncontrollable movements) and the myoclonus that affects your hands. I was unable to write legibly.

Both have gone away within the last month and I am medicine free.

I also cleaned up my diet though and avoid dairy, eggs, soy, corn and the "crap" found in processed foods. I had digestive issues that forced me to address all food sensitivities. Those are gone too

Others here have had similar experiences. Hope this helps ... Marcia

[Presenttime14]

Hi I just read your post about your two year old. The first time my seizures were detected were about 44 years ago.  At the time it was diagnose as a seizure disorder. At that time you did not talk about. I always new there was something deeper going on... and I have done a great deal of research including coming across an article that research into food allergies was discontinued when anti seizure medication cam into play.  I had my DNA test and I have marker for celiac disease. I had some tests done and the GI doc said it is likely I have celiac disease.  I found your post when I was looking for an article posted on one of the celiac site on celiac disease and epilepsy and celiac disease.  I was printed in the Journal of Neurology.  I wish I had printed it.  I talked about patients who have been diagnosed with epilepsy don't have any gut damage but it effect the brain.  I started with DNA marker.  I found experimenting on my own eliminating gluten and dairy and recently corn has been a huge help. Keto diet has been known to help with seizures disorders. I kept a journal of what I ate and how it affected my health emotionally, physically. I was able to find my triggers and eliminate them. Alcohol, Stress, Lack of sleep, Sugar, Caffeine, gluten and dairy and corn.  As I got older, I also paid attention and tracking my dream and received a lot of answers.  Best wishes you your daughter and family.  At this point, with our food supply being tampered with I believe that DNA testing for Celiac Disease genes.  If you have the markers, it doesn't mean you have celiac disease but the possibility is there...  You would need to refer to you doctor, preferably one that has knowledge of Celiac Disease.  It took me 46 years to get diagnosed.

[LIZARD66]

I am a 52 yo mom who started having seizures in infancy, soon after beginning baby cereal. At 41, and many seizures later, I was finally dx'ed with celiac disease. Been completely gluten-free 10 1/2 years now, and my szs completely stopped about 9 mo after all gluten had been eliminated from my diet. I had a few "oopses" along the way but just marked 5 years sz-free in February!!  Gluten is poison!!!! 

[cyclinglady]

4 hours ago, LIZARD66 said:

I am a 52 yo mom who started having seizures in infancy, soon after beginning baby cereal. At 41, and many seizures later, I was finally dx'ed with celiac disease. Been completely gluten-free 10 1/2 years now, and my szs completely stopped about 9 mo after all gluten had been eliminated from my diet. I had a few "oopses" along the way but just marked 5 years sz-free in February!!  Gluten is poison!!!! 

Thanks so much for sharing!  ?

[healthysquirrel]

On 5/3/2019 at 1:55 AM, LIZARD66 said:

I am a 52 yo mom who started having seizures in infancy, soon after beginning baby cereal. At 41, and many seizures later, I was finally dx'ed with celiac disease. Been completely gluten-free 10 1/2 years now, and my szs completely stopped about 9 mo after all gluten had been eliminated from my diet. I had a few "oopses" along the way but just marked 5 years sz-free in February!!  Gluten is poison!!!! 

SOOOOOOOO HAPPY for you, it is really tough to not know when we will collapse, but after so much time it must be quite freeing.