Now don't get me wrong, we do work to eat healthier, but we have done that for years. We try to eat less processed food and meats, we stick to meat cuts, and whole foods. I never buy refined sugar products except for birthdays etc. We Juice and even the kids loves the cilantro juice I make.
Another thing is in all the research I've been doing to help Vivian, there are many things that are cross contaminated with wheat or gluten that a person who is clinically allergic to gluten (Celiacs Disease) can not have, like fries because they are fried in the same oil chicken nuggets are fried in. Even some rolled oats that have been planted next to wheat fields because a breeze could blow the gluten proteins onto the oats. These people have major physical reactions and become sick for hours and even days.
I had her tested 3 months ago with an allergy specialist for Celiacs disease among many other tests. She was negative for them all.
According to some of what I've read, kids like Vivian react neurologically or behaviorally. So we have been testing this cross contamination with her. I've given her a few things that would be cross contaminated, and she has not seemed to be greatly affected by it. Then we had a major slip up.
I bought some fried chicken with the intent it would just be Nick eating it and taking it to work. I left it out, and Vivian grabbed a drumstick and ate the whole thing. I was not too worried because she had been off Gluten for almost 2 months and the breading was thin on the chicken. Within the hour she started to become very winey and upset. My younger sister was here and we had planned to go to the mall, which proved to be the wrong place to take a reactive Vivian (I would have never taken her to the mall before, because from experience the mall was too stimulating to her and she would melt down everytime.) Either Nick or I would sit in the car with her for the duration of many shopping trips, or trips we took with the kids. Lately she had not even had a regular tantrum in a store, and for the first time seemed to enjoy and take in the stimulation.
This time is seemed as though she regressed and for 3 hours she cried and threw tantrums, she didn't want to go in stores, didn't want to leave once we got her in. She didn't want to walk, but didn't wan to be held. She'd scream and carry on until we decided it was time to go. That is when she left normal 3 year old tantrum time and went into full glazed over melt down mode. It was like her verbal and reasoning skills where turned off. She melted down the whole 45 min drive home, with my younger sister witness to the complete loss of coping or reasoning within hours. She was screaming at the top of her lungs over and over. I asked if she hurt and she wouldn't even look at me to try to communicate.
When she was tested for different allergies the Dr. talked with me about the few different types of reactions and how some experience physical ailments such as hives or swelling and stomach problems from allergies, and then sometimes neurological reactions like behavior.
I do not know for sure if she was having physical pain from the gluten reaction. She has never had hives or swelling etc and she tested negative for Celiacs. Its so painful to not know what is happening exactly or how to help her.
This is definitely a trial and error experience. We hope that as she gains verbal skills, we can get accurate communication about how she feels and what she's reacting to. It is frustrating at times. I will agian say, the tremendous amount of progress that we've made from simply changing her diet has been the biggest blessing I've witnessed with Vivian so far.
The next post will be about how going Gluten Free has actually helped the whole family in numerous ways, and who we found out has a physical reaction to gluten we didn't even know about. FYI that post will have some TMI. ;-)
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