Introducing Myself!

[BeckyWJ]

I am a mom of 5. My 10 yr old daughter and 6 yr old son most certainly have gluten issues. My daughter had horrible headaches, hallucinations, and altered neruological functioning almost once a day for several months (maybe almost a year) before we stumbled upon the cause. I assumed her headaches were migraines. Doctors were no help. Her "episodes" usually lasted 2-8 hours. After one episode lasted 24 hours, we took her to a children's hospital er. They weren't much help, either. They did, however, do CT and MRI scans to rule out tumors or bleeding on her brain. One dr. did suggest a psychiatric issue. They did a referral to a pediatric neurologist in another city. We went to that appt with me believing he would tell me it was migraine-related and give her medicine to stop it.

When the neuro said it was definitely not migraines, I was floored. He made an appt for a 24 hour EEG since she was having the rections every day at that point. That afternoon, an aunt told me food could cause wierd stuff like that. Since I was at the end of my rope, we decided that over the weekend, we would restrict her diet. That night I did some internet research and decided that it could be gluten, so Friday night was her last gluten meal. That Saturday she had a mild, about an hour long episode, and that was the end of her symptoms. Well, almost the end. We had a few cross contamination episodes, and she couldn't tolerate anything gluten free that had been "processed in a facility with gluten". We ended up not doing the 24 hour eeg since her symptoms were gone! She's been gluten-free for about a year.

My 6 yr old son had a seizure disorder for which doctors had no explanation for. I read that some seizures were caused by gluten, so we put him on a gluten-free diet. No more seizures. Except for the one time I doubted my diagnosis and let him eat pizza. The next morning he had a seizure. He's been gluten free for a couple of months less than my daughter.

Thanks for letting me drop in!

[Grace'smom]

I am a mom of 5. My 10 yr old daughter and 6 yr old son most certainly have gluten issues. My daughter had horrible headaches, hallucinations, and altered neruological functioning almost once a day for several months (maybe almost a year) before we stumbled upon the cause. I assumed her headaches were migraines. Doctors were no help. Her "episodes" usually lasted 2-8 hours. After one episode lasted 24 hours, we took her to a children's hospital er. They weren't much help, either. They did, however, do CT and MRI scans to rule out tumors or bleeding on her brain. One dr. did suggest a psychiatric issue. They did a referral to a pediatric neurologist in another city. We went to that appt with me believing he would tell me it was migraine-related and give her medicine to stop it.

When the neuro said it was definitely not migraines, I was floored. He made an appt for a 24 hour EEG since she was having the rections every day at that point. That afternoon, an aunt told me food could cause wierd stuff like that. Since I was at the end of my rope, we decided that over the weekend, we would restrict her diet. That night I did some internet research and decided that it could be gluten, so Friday night was her last gluten meal. That Saturday she had a mild, about an hour long episode, and that was the end of her symptoms. Well, almost the end. We had a few cross contamination episodes, and she couldn't tolerate anything gluten free that had been "processed in a facility with gluten". We ended up not doing the 24 hour eeg since her symptoms were gone! She's been gluten-free for about a year.

My 6 yr old son had a seizure disorder for which doctors had no explanation for. I read that some seizures were caused by gluten, so we put him on a gluten-free diet. No more seizures. Except for the one time I doubted my diagnosis and let him eat pizza. The next morning he had a seizure. He's been gluten free for a couple of months less than my daughter.

Thanks for letting me drop in!

Welcome, Becky...you'll find a lot of support and good info. here. Hope the kids stay well. Emily

[GFinDC]

Welcome and congrats on figuring out the problem! Gluten can cause gluten ataxia and is something you might want to read up on. Also some people put their autistic children on a gluten free casein free diet. Some say it helps, I believe it could myself. You'll often see it abbreviated as Gluten-free Casein-free or GFCFSF when adding soy-free.