My 12-year old daughter has celiac disease and temporal lobe epilepsy (for 3 years). Her partial seizures in the left temporal lobe are actually a symptom of celiac disease. She does not take any medication. When she is gluten free (and dairy free - common for celiacs to have dairy problems at lease intially), she is seizure free. You can enjoy eating and eat a lot of foods -- but it is a learning process that is continual! It can be tough especially when you want to eat out or at a friends house. Hang in there --

Hi ILlove. I don't personaly have celiacs but my father in-law did so I do know some. I was on a hunt for recipes for him because he realy was'nt enjoying much of the permitted food. I may be able to help you in that area. I have a question though. What type of meds are you taking? Post a little note on your blog. Enjoy your time here and I hope this helps a little. Smiles!

There's some excellent info at www.celiac.com, including a forum where you can get lots of information from others with Celiac and gluten intolerance (yes, they're two different things), as well as other food issues.  It's a great place for asking all kinds of questions, finding sources for gluten-free foods, and recipes.  There's even  sections for teens and for parents of kids with Celiac.

One of the best features of the site is that it has listings of foods where gluten is "hidden".  This is invaluable for avoiding getting glutened.  There are also restaurant guides.

Good luck and, hopefully, your new diet will help cut down or eliminate your seizures.

My son and I both are gluten intolerant and have always tested negative on any blood tests and biopsies.  However, there is a great Dr. in Texas....Kenneth Fine, MD-gastroenterology.  He has a lab called enterolabs with the latest equipment to test for various food allergies, gluten intolerace, antibodies to gluten and genetics for the disease.  It is all done with stool samples sent via Fed EX to get clear results.  Around $249 if I remember correctly.  Anyone from around the country can order.  Go to www.enterolabs.com for more info.  I have finally gotten answers and don't feel like I am crazy anymore the way most gastro docs will make you feel.  The large majority of them truly do NOT understand this disease or intolerance.....and I believe it is 2 different things if you catch it early.   I positively have "weird" symptoms and illnesses disappear when 100% strict on a gluten free diet and so does my son.  We found out about our intolerance back in 2006 (however had been on the search for 10 years), when this post was started.  However, in July 2009, my son started having seizures.  Is this another result/strange illness of our non-compliance to the diet?  Probably!  We had been about 9 months OFF of the diet when he developed seizures.  We have been through ALL sorts of testing and he was having 5-7 complex partials everyday.  We FINALLY found great doctors and help at Wake Forest Univ. Baptist Hosp. in Winston-Salem, NC.  He was originally diagnosed by our local neuro as having epilepsy at night from left temporal lobe and pseudo seizures for his 5 or 6 seizures during the day!!!  How ridiculous since all seizures were IDENTICAL......I knew as a mother and with my own instinct that this diagnosis was not correct and sought out 2nd opinion.  My son was getting worse and seizures controlling his life!  He is only 11 y.o.  We went to the epilepsy monitoring unit at Wake Forest and they found that his diagnosis was completely incorrect.  He has Frontal Lobe Epilepsy, specifically coming from the supplementary motor area and clearly showed on the video EEG that his seizures were not psychogenic in nature, but neurologic.  This type of epilepsy is many times misdiagnosed as PNES or pseudoseizures.....psychogenic in nature.  They started him on IV Depakote (Keppra did not work) and Trileptal.  It is now day 4 and he is seizure free so far!!!!Praise the Lord!  The best part is that our new doctor is willing to look at and study the possibility of gluten intolerance being the cause of his epilepsy and set us up with the pediatric gastro dr. as well!  He does not at all think I am crazy and sent his students to do the research on this subject.  I am so grateful to this facility as they are interested in the wellness of the whole individual.....and that is so hard to find.  I would recommend them highly!

I know this is a really old thread, but I'm wondering if any of you who posted a comment are still on this board. I was diagnosed with celiac disease 7 months ago, and seizures 3 months later. There HAS to be a connection, however both my neurologist and GI specialist say they've never had patients with both conditions (and therefore presume they are not connected in my case!) Very frustrating. If any of you are still out there, I would really like to here how you are doing, both in terms of the seizures and celiac.

My daughter had her first seizure 3 days before her 17th bday. She was diagnosed with JME and put on Keppra. She has been on a variety of meds and combinations. Is currently on Lyrica and Zonegran. Most weeks she would still have from 2 to 10 episodes a week. Barely made it through high school, but is doing very well her freshman year in college. In addition to the onset of seizures, she started testing positively for rheumatoid arthritis or lupus.

She went on a gluten-free, dairy-free diet and for the first time is more normal than she has been for a very long time. We have not been able to find a doctor who agrees that diet could have contributed to her problems all along. (She showed many signs and symptoms of celiac disease since 18 months of age.) Her follow up blood tests for the rheumatologists came back normal after the diet change.

We really like her current epileptologist who helped her identify the difference between her seizures, episodes, and migraines. However, she is unwilling to consider why she started having seizures and why typical anti-seizure meds haven't always helped.

Her diet change has been the first lifestyle change that has really shown any improvement in her health. The only times she has difficulties now, 2 years after the onset, is when she either accidentally or purposely eats something containing gluten.

I really believe that there is a connection. Any idea how we get medical support and understanding?