Ginnie64

Hi my son is in grade 7 and it is time for them to get there hepatitis shots. A form came home that said it may contain wheat. Has anyone else recivied their shots and did you reacted to them. I want him to have the needle to protect him, but not if it's going to cause him pain. Is a day or 2 of pain wearth him being protected..

Thank you for your input, I new it couldn't be right.

Hi I was speaking to a Holistic Nutriionists today and told her about my son having Celiac. She was very excited to tell me about this BIE treatment. It sounds hokey to me. Does anyone know anything about this. It's hard to believe all you have to do is have accupuncter and you wil be able to eat wheat and not have any issues.

My son complains that the gluten-free foods are not filling and is always hungry. What can I give him so he feels full, is he missing something in his diet that he needs. He is a very picky eater as-well. Any suggestions would be helpful.

In 2006, I began working on a Masters/Education. For 2 years I read every single medical article I could get my hands on about celiac disease, its affect on children and learning, and how schools work with celiac kids and their families. My classmates were sick of hearing about it! Until I put it all together for my final Action Research Project presentation. THEN, they got it. They understood. My obsession was because of my own children: 4 with active celiac, 1 with gluten intolerance/gene who acts very, very much like the children described here (thank you for sharing!).

Gluten exposure was once explained to me early on as having the same affect as rat poisoning, it kills slowly.

However, after reading so many articles, interviewing so many parents, and seeing the affects of gluten on my own children first hand, gluten has more of the same affect as alcohol, making our children high functioning 'drunks'! Gluten affects the brain and body in much the same way as alcohol does, and like alcohol, it affects each person quite differently: ability to focus and balance, memory loss, uncontrollable or sudden angry outbursts, depression, lack of interest, exhaustion, black outs, etc. I have seen all of this at different times and in each of my children (or myself) over the past 7 years, some heartbreaking and some terrifying moments that non-celiacs just wouldn't understand.

From what I have learned, repairs can take anywhere from 6 months to 2 years or longer. The sad truth is, in worst case scenarios (when the gluten free lifestyle is not strictly adhered to or caught early enough), the damage may not be completely repaired.

My oldest children are now able to explain to me what happens when they are exposed. My eldest says she becomes angry at everyone for everything and can't stop the anger, so she isolates herself until she feels the worst affect has passed. She added that she can't think straight, is illogical and overly emotional. My next eldest says she feels like all the energy has been zapped from her (she was also anemic), that something is squeezing her until she feels like she is going to explode. She also says her bones hurt, like fibromylagia (this limits what she does today). When she has been exposed, everyone knows it within 15 minutes as she becomes verbally mean to her siblings and has become violent at moments. My middle daughter says she hurts all over, has 'major brain fog', feels extremely agitated and even the smallest thing will set her off, is lethargic, just not wanting to do anything, and even nauseated. Though they all were good students, all have said they can't remember what teachers have told them, what they wrote in their notebooks or read, or events of the day, and math was their toughest concept to grasp.

My youngest daughter, Calli, the very editor of the Celiac Kids Club online magazine (GIG is our sponsor), now 10, is going through the stage of "It isn't fair. I HATE celiac disease!"--almost on a daily basis. She writes about her experiences, her frustrations and others' reactions to her, and things she learns about celiac disease as the celiac mouse character, Swheats, in her magazine. The magazine creation helps her understand the condition, and allows her to vent a bit, too. (We'd LOVE to have other kids, or their parents, share with us, too!)

My son, only 7, says he can't stop his anger (which I believe), and every night he begs me to scratch his back or put lotion on him because it feels like his skin is crawling (that would make me unable to sit still, too).

Yes, they do grow out of it and they do eventually decide on their own that they don't like the affect of gluten on them! Its that time between now and their own moment of self-realization that is exhausting for parents.

You will go through phases:

1. You control everything in their environment until YOU see improvement.

2. They improve and think all is better, then beg for gluten items and you will be tempted to give in.

3. They start to sneak gluten when they think you will never know (but as a parent, you WILL know!)

4. They realize (expect this to be late teen years) they don't like the feeling of gluten in their bodies and they will stop having it in their diet.

This forum is a great place for support. Check into local support groups as soon as possible. And make sure you take a break at least once a week, just you by yourself, away from the stress that celiac disease throws at you. My battle with celiac disease a daily adventure. I never know what to expect.

It isn't the child that wears you down, it is the disease. Stay strong!

Hi Victoria5

I found your info very helpful. Thank you for writing all this info. My son doesn't have anger problems but he has told me his brain is in a fog, and his bones hurt. I have a better insight to what he is going through.

Thank you

Hi Star Ski

It is hard at first,but believe me it gets easier. My son (age 11) has been on his diet for just over 3 months. I agree with not buying rice bread, my son will not eat it. But the white bread in the freezer section is much better. He also really likes corn pasta instead of the rice pasta. I buy plain muffin mix and add my own things to it, like chocolate chips or fruit. I'm not big on baking so the packaged mixes or good, there is a lemon cake and brownie mix that my son really likes as well.

Hope this helps

You should be very proud of your son. That was great.

My son has been on his new diet for a few months now, and I am still noticing his health improving. The other day it occurred to me I wasn't buying boxes of tissue on the grocery order like I use to. My son has always had a runny noise, and now he doesn't. His now diet is working great.

There is so much to think about. I have been researching this for 2 months and every time I think I have a handle on things I read something that send me back reading labels again. It can be overwhelming at times. I read that you need to check your bathroom for gluten because it can be in your toothpaste and other things. Who would have thought. I do appreciate your your help.

Thank you for your comments. I have to work harder to make sure he has a yogourt every day the doctor did say he should eat it every day. I just started giving him vitamins a week ago, hopefully that will help.

Hi my son has been on a gluten free diet for 2 months. He has not been properly tested, the doctor has said I can do my own test by putting him on this diet, if he stops having all the pain he has celiac. He has no more pain and his gas has dropped by 80%. Looking back at things I would say he has had this since he was put on food when he was a baby. He is 10 years old now. I thought he was very colicky as a young child since you can have it up until your 5 or 6 years old. He has never been a really healthy child, but since he has been on the diet he has had to very bad colds. My question is, is he going through a lot of changes in his system which is lowering his immune system? I thought he should be getting healthier.