Seizures and Gluten

[Suzan]

I don't really know how this relates to PANDAS or if it does at all but I figured I'd post in case it's helpful for anyone or if anyone has any thoughts or experiences.

 

dd7 has a history of seizures, the staring kind that last 10 sec. or so. Long story short, she's been off all meds and seizure free for a year after going gluten free. Fast forward to earlier this week, she had a seizure. I'm very worried of course and I think it's because I've let my guard down on the gluten free diet and have not been checking every item that she eats at restaurantes, etc. so I know she's gotten some gluten. She used to get sick within minutes of eating it but now I guess she's healed and so she is reacting differently.

 

She's been super angry and unreasonable and difficult, threw a lunch box at me, refuses to comply, stuff like that. It's hard to tell what could be PANDAS or what is the gluten. Right now I'm thinking it's the gluten but maybe too it was the GABA Plus.

 

Our neurologist did decide to take her off the GABA Plus in case that was causing them to get triggered and I am to keep a log if I see any more of what she was eating or doing or her state of mind, etc. before the seizure. Now it's just a waiting game to see how she improves as I tighten her diet back up.

 

She may still be on the IVIG track for her OCD although the OCD seems to be calmed down right now, at least the hoarding and fear of choking.

 

Susan

[dut]

Hi - we tried gaba for our ds2 and got a paradoxical reaction. He became more difficult to handle and much worse tempered. Valerian had a similar effect. We tried both a few times to make sure and always got a negative reaction.

[mkur]

Curious - how long has your child been taking GABA Plus. I can't help you sorry.

[Fixit]

i saw a special on something like 20/20 about 4 years ago or so on celiacs and seizures...

they thought their child had some other condition for years was in special ed classes..long story...

finally at 4,5, 6 years old, don' tremember she videos boy....doc says seizures...

so they go to put on seizure meds...she decides not to at last minute...asks...why is he haveing seizures!!!

celiacs...that poor kid lost so many years.....

Caryn posts on the ts board...she has a website, board dedicated to this..she has alot of info!!!

[Suzan]

Curious - how long has your child been taking GABA Plus. I can't help you sorry.

 

She had been on it for about 3 weeks going from 1 cap a day up to 3 caps a day.

 

Susan

[dut]

hi - just curious but what is the plus part.. may it be something else in there and not the GABA that is an issue?

[Suzan]

hi - just curious but what is the plus part.. may it be something else in there and not the GABA that is an issue?

 

The type we have has the following per capsule and she was on 3 a day. Do you see anything there that could cause trouble?

 

GABA 100 mg

L-Glycine 50 mg

Inositol 650 mg

Taurine 50 mg

 

Today she told me she was feeling like pulling out her hair but I have not seen her do it. I have seen a few things that looked like the start of a seizure but they have not progressed. My guess is she's having very short ones that are not fully appearing before they are gone. She is still difficult.

 

Susan

[dut]

Sorry - I don't know enough about any of them to comment.. hopefully others will have an idea.. good luck at pinning it down

[matis_mom]

Thanks you Susan for that post. Our issues are different but I have been seriously considering going glutten free for a while at least... Do you have any resources or tips to share. I have a large crowd to feed so fancy gluten-free mixes are not an option.

[Suzan]

Thanks you Susan for that post. Our issues are different but I have been seriously considering going glutten free for a while at least... Do you have any resources or tips to share. I have a large crowd to feed so fancy gluten-free mixes are not an option.

 

 

For me, if you have time to cook, simple meals with protein, veggie, fruit and rice or potato's works great. The bread is the hardest to replace. I buy expensive premade bread from the healthfood store but I hear that if you buy a breadmaker, you can make some really good gf bread.

 

This is the celiac forum and info board I like that has many great resources

http://www.celiac.com/gluten-free/index.php?http://www.glutenfreeforum.com/

 

http://www.celiac.com/pages/Advertising.html

 

Good luck! I think GF is a great eating plan for kids with pandas regardless of whether the are officially intolerant to it.

 

Susan

[mkur]

Thank you for posting. I couldn't find anything on 20/20 but the NIH lists gluten as a possible cause for seizures and pubmed.gov has several articles listed. Some of them recommend testing children with epilepsy for gluten sensitivity to rule out celiac disease. They also mention a folic acid deficiency that can cause calcification in the brain which leads to seizures. One article says that celiac disease shows up first neurologically. I had always thought that celiac disease lead to osteoporosis and could cripple people not neurological disorders like seizures.