I wanted to give an update on my son's diagnosis in case it might help someone else.
Nov 2013 my son had his first seizure. Complex partial. Middle of the day. It was preceded by a tiring weekend trip and accidental gluten exposure during our travels. He was diagnosed with BRE after an EEG that was done in the ER and started on Trileptal. The neuro we were referred to said that there was no way gluten exposure had anything to do his seizure.
Almost exactly 3 months later my son had a 2nd complex partial. We happened to have a consult scheduled later that day with a different neuro for a second opinion. She felt the seizure duration and characteristics were not indicative of BRE. We couldn't identify a gluten exposure preceding the second seizure and although this neuro did not rule it out she said there aren't many studies linking the two. She referred us to the Epilepsy Center at Florida Hospital for and MRI and 24hr EEG. The idea was to rule out physical causes behind the seizures.
After testing the epileptologist told us that she believes his seizures are caused by celiac disease and gluten exposure. She has seen a few similar cases of intractable epilepsy that presented on the EEG similar to my son.
My son has been on a gluten-free diet diet his entire life although we haven't been uber strict. When I first introduced foods to him I noticed that wheat seemed to 'run through him' so we just avoided it. (When we would eat out we didn't order things that obviously contained gluten but we didn't usually request gluten-free either) Allergy tests for wheat were negative so we thought he just had an intolerance. I'm thankful that we were mostly gluten free before since the seizure frequency would most likely have been much worse if he was having lots of exposure to gluten.
We are going to start weaning off of the Trileptal this week and are now following a strict gluten-free diet for our entire household. Fingers crossed we've nailed the cause and can keep him seizure free.
I was told twice (once emphatically) that gluten was not causing my son's seizures. In my gut I felt differently. I wanted to share in the hopes that it might help someone else someday.
Nov 2013 my son had his first seizure. Complex partial. Middle of the day. It was preceded by a tiring weekend trip and accidental gluten exposure during our travels. He was diagnosed with BRE after an EEG that was done in the ER and started on Trileptal. The neuro we were referred to said that there was no way gluten exposure had anything to do his seizure.
Almost exactly 3 months later my son had a 2nd complex partial. We happened to have a consult scheduled later that day with a different neuro for a second opinion. She felt the seizure duration and characteristics were not indicative of BRE. We couldn't identify a gluten exposure preceding the second seizure and although this neuro did not rule it out she said there aren't many studies linking the two. She referred us to the Epilepsy Center at Florida Hospital for and MRI and 24hr EEG. The idea was to rule out physical causes behind the seizures.
After testing the epileptologist told us that she believes his seizures are caused by celiac disease and gluten exposure. She has seen a few similar cases of intractable epilepsy that presented on the EEG similar to my son.
My son has been on a gluten-free diet diet his entire life although we haven't been uber strict. When I first introduced foods to him I noticed that wheat seemed to 'run through him' so we just avoided it. (When we would eat out we didn't order things that obviously contained gluten but we didn't usually request gluten-free either) Allergy tests for wheat were negative so we thought he just had an intolerance. I'm thankful that we were mostly gluten free before since the seizure frequency would most likely have been much worse if he was having lots of exposure to gluten.
We are going to start weaning off of the Trileptal this week and are now following a strict gluten-free diet for our entire household. Fingers crossed we've nailed the cause and can keep him seizure free.
I was told twice (once emphatically) that gluten was not causing my son's seizures. In my gut I felt differently. I wanted to share in the hopes that it might help someone else someday.