Thinking About A Gluten Free Diet For My Son And I

[jellybean]

We are both in diagnostic limbo. My son started having myoclonic seizures a year ago. He also has sensory issues, OCD, and angry outbursts. He is very sensitive to voice inflection. We have to speak very monotone because he gets hyper excited when our voices show any passion at all even if I'm speaking on the phone.He will become angry and yell and hit He is also somewhat delayed of rhis age of 3 and half. . We had considered autism, but it has dismissed because he is very social and affectionate making good eye contact. I have been suffering joint pain, headaches, extreme fatigue, mouth sores, heat sensitivity, sensitivity to light and some sound, memory loss, confusion, dropping things, running into things, etc. I am currently awaiting a rheumotologist appointment for the end of the month. My PCP suspects auto immune. I have a positive ANA, but haven't been tested for much more. I have been wondering lately if my son and I have a condition that is related possibly. We have tested him for a lot of different things. I don't thinks celiacs though. It doesn't run in my family. His blood work so far has ony shown low IGG levels. ((Does anyone know what that means??)). His geneticist suggested we see a rheumotologist for him as well. Anyhow, I've read that some people have had good luck with a gluten free diet with seizures, autism, auto immune disorders. I am looking for any advise. Conditions I have considered that we might both have are lyme disease, celiacs, lupus, etc.

[The Fluffy Assassin]

Conditions I have considered that we might both have are lyme disease, celiacs, lupus, etc.

I don't know that Lyme disease is inheritable, but I guess it's possible, assuming that you're the mother. You could have a history of celiac disease in your family and not know it, as it is a very under-diagnosed (or misdiagnosed) condition and has always been, at least in America. If you or anyone in your family has suffered from cancer of the small intestine, chronic anemia, unexplained pins-and-needles sensations, lactose intolerance, explosive diarrhea, or a host of other symptoms you might have a history of celiac disease in your family. You could always try a gluten-free diet for a week or so. If you feel better after that period, this might be the answer. (As people point out around here, you have to keep eating gluten until your biopsy to get an official diagnosis of celiac disease from most doctors. However, in the case of a 3 1/2 year old, genetic testing is probably better anyway: https://www.celiac.com/celiac-disease/ten-facts-about-celiac-disease-genetic-testing-r1255/

Finally, I just want to say good luck to you and your son. Hope you find a solution in the shortest possible period of time.

[gfb1]

[snip] Conditions I have considered that we might both have are lyme disease, celiacs, lupus, etc.

lyme disease is NOT heritable. it is caused by bacteria -- spread (mostly) in the US by several species of ticks. it can, however, be spread from a pregnant mom to her fetus.

there are several possible causes of igg deficiency in children. as most in the forum know, many celiacs are iga-deficient. people can also be igg deficient as well. igg deficiency can also be brought on by chronic infections. there is no clear pattern of inheritance for igg-deficiency, but most children with igg deficiency grow out of it as they get older.

maybe i missed it; but, if your son has a 'geneticist' are there other problems as well??

[jellybean]

lyme disease is NOT heritable. it is caused by bacteria -- spread (mostly) in the US by several species of ticks. it can, however, be spread from a pregnant mom to her fetus.

there are several possible causes of igg deficiency in children. as most in the forum know, many celiacs are iga-deficient. people can also be igg deficient as well. igg deficiency can also be brought on by chronic infections. there is no clear pattern of inheritance for igg-deficiency, but most children with igg deficiency grow out of it as they get older.

maybe i missed it; but, if your son has a 'geneticist' are there other problems as well??

Yes, my son does have other problems. He has what they refer to as idiopathic primary generalized epilepsy with myoclonic seizures. Basically "idiopathic" means they have no clue what causes it. Epilepsy is a condition not a disease. It is caused by something else. We've been seeing a geneticist to try and figure out the underlying disease that is causing it. There has to be a cause. Epilepsy does not run in our family. I had considered lyme disease because I have been sick for some time and I had heard that it can be passed from the mother to the child during pregnancy. My son has always been very irritable even as a baby. Lots of colic. He was also sick as an infant with projectile vomiting. He was dx'd with pyloric stenosis and had surgery at 6 weeks. No clue where that came from either as it doesn't run in our families. He started having the seizures around 2 1/2 years. He was having 50 or more myoclonic seizures a day before he started meds. He is still having abnormal EEGs. He also complains of his belly hurting. He has sensory issues similar to autism, but no social issues or eye contact problems so that has been ruled out.

[ang1e0251]

My son has always been very irritable even as a baby. Lots of colic. He was also sick as an infant with projectile vomiting. He was dx'd with pyloric stenosis and had surgery at 6 weeks. No clue where that came from either as it doesn't run in our families. He started having the seizures around 2 1/2 years. He was having 50 or more myoclonic seizures a day before he started meds. He is still having abnormal EEGs. He also complains of his belly hurting. He has sensory issues similar to autism, but no social issues or eye contact problems so that has been ruled out.

My son also had surgery for pyloric stenosis at 6 weeks. He is a healthy 26 year old now. My understanding at the time was it is not hereditary but common in first born boys. No one in either of our families has had it. It's funny because when he was 10 months old we visited family in Colombia and the pediatrician there said it was most common in first born girls in their country!

I don't know anything about seizures but I have read other posters say they found relief from some or all of their seizures on the gluten-free diet. Belly hurting does certainly sound like celiac disease. He probably won't be able to test positive by blood as you pointed out. They could take an endoscopy but with his other problems I don't know what his dr's would advise. Would your dr agree to a trial of the gluten-free diet? You could always do it on your own but with your dr's cooperation, you could work together for a dx.