My daughter has celiac disease and atonic seizures. She was dx with celiacs at 16 months old and we had already noticed falling issues at that point. We thought that they were because she was so malnourished. She continued falling as she got older and at the age of 4 we finally got the epilepsy dx. Unfortunately for us her diet did not help her seizures. She was up to 10-20 a day, but now with meds we have not had one since May. It is amazing what fixing the diet can do. I am glad that you have been able to help him.
So glad you have been able to identify a food/diet connection. As it turns out, Henry has a similar story. In hindsight there were many symptoms of celiac (malabsorption, growth slowing, anemia); however, he did not ever have the upset tummy/digestive issues more commonly attributed. Turns out he was very sick with celiac. Once he was diagnosed, we tested family to find his sister, dad and paternal grandmother were all positive, too! You can imagine how so many family members started feeling better almost immediately following a gf diet.
Regarding the epilepsy connection: Henry was also intractable. He was basically running around one day and then in status in the PICU. Thus the E odyssey began. Over the course of 1 year he quickly became very sick and unable to go to school, etc. Fast forward through doctors, new meds titrating up and weaning off, more and more tests, seizure activity building to over 100 per day - I thought I was loosing my son. We found ourselves at Mayo in Rochester, Mn, subdural grid surgery, and a partial temperal lobe resection. And pathology indicated a possibility of Rassmussens -so scary- However, because that is likely an autoimmune disease they ran a full autoimmune panel - that is when we found the celiac. It was like the puzzle pieces finally started to fit together and tell a story. It was not clear, but starting to make some sense.
Unfortunately with soooo many seizures, that probably became more of an issue with all the damage. Such a vicious cycle. Even though it was only 5 years ago, science has made great progress. The gastro docs at the time did not commit to there being a link between celiac and seizures (unless it was an obscure type Henry did not have.) We also sought opinions with docs at University of Chicago, who then told us 'no way is there a connection' who now admit to connections between celiac and E, (in the journals)
Just thinking back to some of the darkest times before we knew about the gluten intolerance, we would actually celebrate some occasions with things like pancakes and waffles and pastries! Just making it worse! Of course we don't dwell on that now.
We have a gluten free home. Even the dog food is gf. Henry also tried the keto diet, as a young teen. He did very well but it was not our silver bullet. He is now low glycemic. We observe it keeps the severity down. And he is very compliant which helps.
When he was on keto - lots of relatives commented on how horrible it is. But I never looked at it that was and challenged them to think of the trade-off. [Lots of folks think gf eating is weird and hard - compared to keto it's a cakewalk, no pun intended] I would rather be able to treat health with food modifications than these heavy E drugs. Food seems so clean to me. No liver functions test every month, no cognitive hinderance, no quarterly vision field tests, no side effects.... :-( ]
What a road. Now he takes Felbatol and Sabril, low glycemic gluten-free diet, and has 2-4 (milder) partial complex seizures every 2 weeks. He is at grade level in HS and runs cross country or track, seasonally. He is getting a seizure service dog. I am really proud of our boy. When I see him run, looking healthy, growing and filling out - my heart swells with gratefulness...A few years ago this wasn't a possibility in my crystal ball. Some days are still really sucky, mind you. The family is still adjusting. But all in all E is woven into the way we live. We have a close and helpful family, which helps a lot. There are very few people who vocalize their disapproval - like if he has a seizure on the track and people tisk tisk that they 'wouldn't let their child be in danger blah blah blah'- I won't go off on such ignorance.
I am grateful, also, for the wonderful and understanding community here.
Thank you for letting me post. I've been so frustrated over the years to hear doctors tell me, "We don't know. This is very interesting." I don't want my son to be interesting in this way.
I started to write to that I am glad to hear of someone else with a direct celiac connection. It took a long time to get his TtG etc antibodies down, but dogged determination helps. It is also difficult at times to find gf meds. He is on one namebrand AED(very $$) because the generic is not gf. Last refill was $900 after insurance. Ouch. I feel like one of those tv commercials. ""No seizures, Priceless!"" except I can put a price on it. LOL
I am feeling so much better tonight after writing my heart out. Thank you for your post and whoever reads this - your patience.
Hugs and hopefully a decent night's rest to all.
While I hate to hear of anyone battling this, I am grateful to hear that I am not alone. We encounter resistance more from the Neuro docs than anyone else. They do not recognize the connection. The GI Doc, out of the gate, said that seizures were a very real possibility. I felt like jumping up and down when he said that and we still hadn't any results yet. Finally someone who didn't look at me sideways and think I was crazy! (and he works in the same clinic! We are a Navy family stationed in San Diego so his primary docs are at Balboa Naval Hospital)
It sounds like Jack was on the same path that Henry was on with the ever increasing frequency and intensity of the seizures. From the start of this he was steadily becoming worse and nothing was working. We were clueless as how to help our little boy and so were the docs. School officials were becoming concerned and I was really holding out for summer vacation to come.
Living Gluten free is more difficult and more expensive but there are so many more options now than there were even a few years ago. My sister has been gluten free for almost a decade so it was not a foreign idea but man is it hard sometimes:) Yes, we too would celebrate with all kinds of gluten laden goodies to celebrate any little thing. Now we have gluten free rice crispy treats or a nice shake. Eating out is just not an option even if there are gluten free items on the menu as cross contamination is very common. Jack is very sensitive to any gluten whatsoever having a seizure a day for 3-4 days after an exposure. Almost every outbreak of seizure activity began the day after eating out somewhere..It's just not worth it and hey, I can usually cook better anyway!
While we're not completely out of the woods yet, we are a bit relieved. It still hangs over our heads and we live one day at a time...but today was a good day, no seizures:)
Great news and thank you for sharing this!
This is very interesting. My husband has Celiac Disease has for the last 25 years and we keep asking the Dr.'s to test our son but they keep saying this or that and then don't do it.... I'm going to have my PED office get the test done. Thanks Kristene Peterson I didn't realize that some the fillers in the AED Meds had celiac in them. Will be very interesting to see if Brodie has it and if he does if that will change anything. I really shouldn't complain he has only been having 5 or so a day Atonic type and a few Mylconic types. The other part I found interesting was being intractable if have celiac that could answer a lot of questions for us. We've had all the gentic testing done on him and everything has come back Normal or Neg. So frutrating to NOT know WHY! I find it so unexpectable that he is on 4 AED Meds and still having "break through" seizures.