Seizures?

[Ivory]

My daugher has had anemia, itp, an ige allergy rate 10 times the normal amount. She gets chest pain and palpitations. She has daily stomach aches and bouts of diahrhea. She is 8 years old. She has had numerous tests on her heart and blood work. She had been tested through a blood test for celiac about 1 1/2 years ago. The doctor refuses to persue it since her bowel movements are not typical of celiac. My concern is that she also gets dizzy and has had times where she has passed out. The other night she almost seemed to seizure. Her hands were twitching and she was seeing flashes of light and lost conciousness. Does anyone know if this can be related to celiac if it even is that and wether or not you think it is worth persuing with the doctor. Any help would be great. Thank you.

[Zane]

My daugher has had anemia, itp, an ige allergy rate 10 times the normal amount. She gets chest pain and palpitations. She has daily stomach aches and bouts of diahrhea. She is 8 years old. She has had numerous tests on her heart and blood work. She had been tested through a blood test for celiac about 1 1/2 years ago. The doctor refuses to persue it since her bowel movements are not typical of celiac. My concern is that she also gets dizzy and has had times where she has passed out. The other night she almost seemed to seizure. Her hands were twitching and she was seeing flashes of light and lost conciousness. Does anyone know if this can be related to celiac if it even is that and wether or not you think it is worth persuing with the doctor. Any help would be great. Thank you.

If I learned anything from my experience with my son, it would be that doctors are not gods nor do they have all the information we seek- especially with a disease like Celiac which is relatively new. You must be proactive as far as your kids' health is concerned, of course this is worth pursuing with the doctor, you should exhaust all options until you find out what is causing this. I was told my son had a stomach virus, then that he was lactose intolerant, one doctor thought that that the itching in his fingers and toes was and I quote "in his head!" I eliminated gluten from my son's diet and it changed everything, he is improving every day. Is your daughter gluten-free? Have you tested her for lactose intolerance, soy intolerance, fructose intolerance? I know it sounds intimidating, but these are simple tests you can do and it would eliminate your concerns as to what is causing your daughter to react. I hope she feels better, there is nothing harder than feeling helpless while our kids suffer, good luck and remember, be proactive!

[Ivory]

Thank you for your reply. When this all started they also told me that it was all in her head. I tried her gluten free for a while but was not all that diligent I don't think. However, on one day she had cereal at school with wheat and came home sick with a headache and stomachache. The next time she had something she called me at work crying because she felt sick but when I gave her something else by accident (but she had only been on for about 1 week) nothing happened. After 10 days I gave up. 2 Days later she ended up in the hospital for what they believe was an anxiety attack so I don't know if it is all related or not. I am thinking that I would like to try the gluten free again and be more diligent but as you know it is VERY difficult to get started. I feel like a hypochondriac going back to the doctor because one minute he seems to be on top of it and the next he brushes it all off like nothing is happening. I have to see my GP next week so I thought maybe I would ask for a different pediatrician. There are only 2 in town and neither are really that great. Anyhow, thank you and I am glad that your son is doing better now.

[Mac55]

I'm so sorry for what your daughter's going through. It must be so hard to watch. She has a lot of the symptoms I had, except I never passed out, came close, or had chest pain. I was diagnosed with silent migraines last fall and get twinkling lights with them. I know others get flashes of light with theirs. It also may be a seizure as well. I would get her to a Neurologist. They deal in migraines and seizures, so you'd be covered in that aspect. I'd also get a GI for her. You're already suspecting Celiac or at least a Gluten Sensitivity and she has stomach pains. A knowledgeable GI would be able to help you tremendously. Push the doctor or switch to get the referrals. I know how frustrating it is, not knowing what's going on with your child. Honestly, what's really helped me is I do my homework. Unfortunately, I've had to "diagnose" the majority of our family's health issues, from silent migraines to Lyme Disease to Celiac to allergies, etc. And my migraines have been drastically reduced by going gluten free. My whole life has changed, for the better! Good luck!

[mznia504]

My advice to all parents, after our ordeal, is to follow your gut. Whenever a Dr refuses testing b/c your child does not have the "typical" symptoms, find another Dr!! M came home from the hospital with GI issues. He was diagnosed with reflux and lactose intolerance. When we started solids (baby foods filled with gluten!!) he stopped gaining weight, threw up all day everyday, and started to have blood in his stool. The GIs diagnosed him with MSPI (Milk, Soy, Protein Intolerance. I found new baby foods (Beechnut) and he was on Alimentum formula and thing got better until we introduced table foods (again filled with gluten b/c we had no idea!!) He was chronically constipated, had behavior issues, foul smelling stools, etc. We continued to complain of GI issues and I told the Drs I suspected Celiac and would like the test run on him. They refused b/c he was constipated instead of having diarrhea which is the typical symptom. We switched Drs. He had an EGD done that showed terrible intestinal damage and he had the blood panel run and it showed positive for celiac disease. He was 2.5 when he was finally diagnosed. Can you imagine going that long in agony?? It's almost a year later and we are still struggling to get his health in order.

And, yes he has seizures. He has a chromosome abnormaility that makes him susceptible to seizures, but two of his biggest seizures (one that landed him in the hospital b/c he couldn't walk for 5 hours after) after ingesting gluten on accident. So I suggest you find your daughter a better Dr and fight to get the tests you feel need to be done.