Epilepsy Foundation

Our 6 year old son was diagnosed with epilepsy in December of 2011. He Had a long history, however, of what he has always called "the wigglies"since he could speak. we never saw these wigglies until October of 2011. After many rounds of meds and combinations and many diagnostic tests he was diagnosed intractable and given a grim prognosis. He was having 30-40 tonic seizures a day. The epileptologist said that for all intense purposes he had Lennox-Gastaut with the exception of not having the mental deficiencies that usually accompany it. We were heartbroken and hopeless. We consulted for the vegal nerve stimulator and were educating ourselves on the ketogenic diet. As many of you know, the ketogenic diet is extremely challenging with young children but you do what you must.

As I was researching the diet I came across some information on a veterinarian website about dogs with seizures that responded to a gluten free diet. It snowballed from there and the next day I removed all gluten from his diet. July 6th 2012. The first day he had 1 seizure! The next day 1 and the next and the next and then...zero. He went 9 days straight with no seizures! Then he had one but only after he had french fries from a fast food restaurant. Every subsequent seizure can be linked to a highly likely exposure to gluten from eating food other then at home.

My sister has Celiacs so we were able to get the genetic test done and he is positive. Because he had been on a gluten free for a little over two months his antibody test was negative. If you suspect a gluten intolerance or Celiacs itself be sure to get the test before you stop the gluten. 1-2% of children with Celiacs has intractable seizures as a symptom! Even if they do not have any digestive symptoms it is worth checking. Our son did have oily stool (a sign of malabsorption), gurd and frequent stomach aches.

As someone said in one of the discussion here, a simple diet restriction is a miracle. We are over the moon and finally see some light at the end of this once very long and very dark tunnel. Hope this can be helpful. Best wished to all.

Tags: Celiacs, and, free, gluten, seizures, sensitivity

Views: 844

Replies to This Discussion

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.

Lori 

Kristene,

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:)

I am so excited to read this is actually being written about!! I have always felt that this is a strong possibility for my son's A-typical seizure history as nothing seems to work. I have severe undiagnosed digestive and facial rash that has been plaguing me for 5 years, but Celiac test always negative. Just recently found out its soy that is causing my main problem, but I feel my sons seizures are caused by food intolerance and now reading your stories I feel even stronger about my hunch. Really curious when I believe it was Susan who commented about Gluten Free meds. Do you know if there is somewhere a website that gives you a list of gf meds. I'm just curious to see if what he takes right now has Gluten in it? He's been uncontrolled for almost 4 years! Any answers would be appreciated!!! Thanks again to all of you for posting these messages!!!
Nicole,
My son also had a facial rash since forever that we could not get to go away. It is now completely gone now:) his cheeks were always red and bumpy.

Here is a link to a very informative article on meds and gluten. Hope it helps. It is from www.glutenfreeinsd.com a very well respected and informative resource from our area.

http://glutenfreeinsd.com/PDFs/PlogstedArticle.pdf

Good luck with your son. I know how you feel about finding someone, anyone, going through the same or even slightly similar situation. I would tear up every time I would find even the smallest thing!

Great news and thank you for sharing this!

I have just recently discovered celiac disease myself and have this on my list to ask my daughters Doctor to test her for it. It's just a simple blood test, correct?

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. 

I feel your frustration. There is so little research as to the connection between Celiacs and seizures but they do recognize a link. They just don't know much about it. We are finding that jack is so very sensitive to any gluten whatsoever and have decided that if we didn't cook it, we don't eat it. Every time he has exposures he will have 1-2 seizures a day for 9-10 days, much better than what he was having for sure but our goal is none. He has mainly tonic and myoclonic type seizures now. It all started with only myoclonic and then progressed to tonics almost exclusively.

He went for 10 days straight with zero seizures last month and I am sure it's because he didn't ingest any gluten. We were on vacation with my sister who has Celiacs and has been gluten free for over 10 years. She knows what to stay away from. Most of our mistakes have been with fast food French fries on the run....potatoes don't have wheat but many other things fried in the same oil do!

I had to get a referral to Jack's primary care doctor and then get a referral to the pediatric gastroenterologist who in turn put him in for the tests. My neuro would not write the referral...we have yet to meet after these test result and am looking forward to hearing his take on the celiac issue now that we know. We have an appointment next Monday.
Good luck with the tests.

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