Aah, finally. That peaceful feeling when you come home from your kid’s appointment with a doctor and all is well and the doctor basically agrees with you.
Ada’s first appointment with her pediatric gastroenterologist back in January left us with that feeling. But during the winter and early Spring I began relying on certain packaged foods again (oh the horror– I bought organic gluten free sausages! Such junk food!) and Ada went through some rough months. She didn’t look all that well and I began focusing on other foods besides gluten, thinking her allergic to legumes and corn and other things.
She was dropping on the weight charts and having fevers and bumpies and rashes and tummy issues. The doctor wanted us to do a gluten challenge if her weight didn’t go up and an endoscopy and we saw an allergist and it just felt like things were spiraling worse. And the throwing up in the middle of the night… that was one of the most distressing (and annoying to deal with) symptoms.
So three months ago we decided for me to cut out all packaged gluten free products, all packaged meats (because spices are often contaminated with gluten in the factory and sausages are spiced– I may make a separate post about this), rice and potatoes and chicken.
After a month her weight improved but the doctor was very in favor of the endoscopy and gluten challenge to prove celiac and we were very torn and upset that every few days, once I thought Ada was healthy, I’d see a rash forming on her smooth lil’ baby bum and feel the bumps popping up by the hundreds across her back and tummy.
But those events were less and less and we began adding the foods with the least possibility of gluten cross contamination back in. I did do some gluten-free tortillas and she had a rash the next day and I had a headache.
So today at her appointment she weight and height were back on their curves and the doctor seemed very happy. She even said herself “someone’s got to the be in the tenth percentile”, meaning that she felt that that is her genetic size and that is okay. She was at that percentile back in January but had dropped down below the 2nd and that is when every one was worried.
And it’s not the weight really. Weight isn’t an indicator of health. But the weight coupled with regular bowel issues and vomiting and skin stuff— yeah, we worried a bit.
Payman and I both felt on the drive up to Raliegh today that even though we feel her weight is improving the doctor will still push the endoscopy and gluten challence, because western allopathic medicine tends to push testing and results and having things on paper.
But we stereotyped her wrong. She was very positive. It felt like our first impression of her was the correct one. She does think we should think about it later. We were thinking when she is four or five and her weight and brain development is past the infant/toddler stage. And also when she is old enough to understand that she may get sick and feel terrible for a few days and she can have a part in her own medical decisions.
The doc said we would want to have a diagnosis to know that we aren’t gluten free for no reason. I told her I’ve thought about it. I’ve thought about what if she turns five and we test gluten and she feelsno ill effects and am endoscopy shows no damage. And I am perfectly okay with having been gluten free as a family all that time, and realizing that she grew out of something.
The doc was surprised. She said she works with many families who get frustrated at having to be gluten free for a year without a true celiac diagnosis. I personally don’t get that. If your kid has enough stomach problems that you have been led to a pediatric GI doc at Duke and it has improved on a gluten free diet, why on earth would you need more diagnosis than that? But that’s just me.
She also said that having the diagnosis may help when Ada is a rebellious teen and wants to eat pizza with her friends because if you have celiac as opposed to gluten intolerance you are at a higher risk for certain diseases and cancers and that will help her take it more seriously.
I see that too, and maybe there is some truth to it, but I think that if Ada has been raised on this diet still gets symptoms as a teen/adult, she’ll probably avoid it of her own volition after a few times. I just think that that is looking at a gluten free diet through a lense that me and Payman don’t have. We see food as our medicine in some ways and our way to health. We just don’t often agree with Western medicine.
I do agree that having a third party, our doctor, who has seen more and knows more about certain things than I do, giving us their opinion is a good thing. And we do value that opinion, we just often see a different way to healing. But funny enough, celiac disease is one disease in which western medicine knows that diet is the way to go. I think the doctor just deals with alot of patients that think going gluten free is a big, big deal and that it deprives you. We don’t see it that way.
Anyhow, long story short the doctor agrees that Ada is doing well now and we are adding in foods and there is no rush to challenge gluten if we don’t want to. All of our focuses are on keeping her healthy and gaining.
I explained what I’ve stopped eating and why, and what we’ve added in and why. For example, waxes on fruits are made with wheat, so there is a trace amount of gluten there and I only buy unwaxed fruits. I only buy rice from one brand that does not share its fields with wheat, etc.
As I explained this stuff I said “Once we went kind of nuts on being really gluten free, she got better.”
And the doctor, I think kind of joking on me, said “You guys tend to go nuts on stuff, huh?”
“Well, she got better, didn’t she?” I said.