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sugarsue

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sugarsue Enthusiast
sugarsue
Posted

My dd(6) has an EEG scheduled for June 1st. With her seizure meds, she's been seizure free for over a year now. Our neurologist leans towards believing the gluten intolerance is what was causing her seizures. She's been gluten free for about 8 months. If the EEG shows no seizure activity, he will start to take her off her seizure meds. I'm terrified but hopeful too! But then, what if she is glutened? Would that be enough to cause a seizure? She does not convulse but she is not aware of anything for 5-10 seconds. It's enough that would keep her from driving if they are not controlled when she's older and very unsafe in swimming pools, etc.

Any experience with seizures caused by gluten? Luckily we've been through the whole EEG thing before so it should not be too bad, I hope not anyway!

Susan

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psawyer Proficient
psawyer
Posted

Neurological symptoms, including seizures, can occur with untreated celiac disease. Malabsorption of nutrients can affect brain function. B12 deficiency is very common and can be a factor.

GFinDC Veteran
GFinDC
Posted

You might find these 2 links to Youtube videos from the Discovery Health TV program Mystery Diagnosis relevant.

They talk about a boy who had seizures as an infant and was found to be celiac. His seizures stopped after going on the gluten-free diet.

Part 1 Mystery Diagnosis Celiac

Open Original Shared Link

Part 2 Mystery Diagnosis Celiac

Open Original Shared Link

sugarsue Enthusiast
sugarsue
Posted
  • Author
You might find these 2 links to Youtube videos from the Discovery Health TV program Mystery Diagnosis relevant.

They talk about a boy who had seizures as an infant and was found to be celiac. His seizures stopped after going on the gluten-free diet.

Part 1 Mystery Diagnosis Celiac

Open Original Shared Link

Part 2 Mystery Diagnosis Celiac

Open Original Shared Link

Oh, I have not watched these yet (I will tonight when I get home) but I think this is the episode a friend of mine saw on MD that got us on the gluten path. She came to work and told me about the episode and thought it sounded like my dd. Thanks for reminding me. That was several years ago now!

Susan

sugarsue Enthusiast
sugarsue
Posted
  • Author
Neurological symptoms, including seizures, can occur with untreated celiac disease. Malabsorption of nutrients can affect brain function. B12 deficiency is very common and can be a factor.

Thanks Peter, I didn't know that about the B12 but luckily we are waiting to find out her test results on this too. She was also low in Biotin which I heard can also sometimes cause seizures. She had (has?) many malabsorption issues. Hopefully resolving now!

Susan

mushroom Proficient
mushroom
Posted

I don't have any medical evidence to support this post, anecdoctal only, but I come from a family of gluten intolerants. My brother was never diagnosed as such but had GI issues and developed a seizure disorder later in life (no brain injury) which sounds similar to your daughter's. It was just a temporary phasing out of what was going on, his eyes would be blank for 5-10 seconds and we would know he was not "with" us, and then he would return to normal and not realize anything had happened except for a slight gap in the conversation. He never convulsed, but lost his driver's license, and eventually died from it when he had a more severe seizure, hit his head on a door molding and developed a brain hematoma and sepsis.

swalker Newbie
swalker
Posted

My grandson's fontanel swelled past his skull at 10 months. They did a spinal tap to check for menegitis and took more fluid than they needed to as a "treatment" for the raised fontanel. They talked about doing more of them to relieve pressure if they needed to. We took him off gluten shortly after that because we found out his Mom was gluten intolerant. We put him back on gluten at 2 1/2 and within two weeks he wouldn't eat anything but Mac and Cheese and we woke up to him having a grand mal seizure. We took him back off gluten and he's never had another seizure. Looking back on it, wheat was causing inattention seizures from the time we started giving it to him.

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      By Jmartes71 · Posted

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