Chris and I recently experienced a rather quick and tumultuous passage through the five stages of grief*. It went something like this:
1. Denial. Chris' response was, "we're not doing that." My denial response (in response to him) was, "I can't do that..." At least not alone...and then I cried.
2. Anger. Chris became angry that I cried. I became angry that he was angry that I cried. And then my anger shifted and I was angry at his denial. After all, it wasn't about him.
3. Bargaining. I renewed my vow to meal plan, shop and cook with absolutely no complaints if he would participate in it, not just go along with it... and do the dishes every night... which was our original deal, but I was willing to bend on that if necessary.
4. Depression. I ate an entire pint of Ben & Jerry's ice cream. Chris watched television and refused to do the dishes. We went to bed with a dirty kitchen and without really resolving anything...
5. Acceptance. In the morning, I told Chris I was going to do this with or without him. But it would be much harder without. He told me, we'll do it. He just wished we didn't have to.
Maybe it would have been helpful to start with that the night before.
All of this turmoil over going gluten free. Boo, hiss, I know. Let me explain.
We took Jillian to the Holistic Pediatrician (HP) in Ann Arbor in May. She was extremely helpful. None of Jillian's doctors have been willing to address nutrition in a satisfactory way (to me). HP started by ordering some tests--labs for genetic testing, food allergies and food intolerances. We had the blood drawn locally, at a Spectrum lab, so all of our Spectrum doctors have access to the results. Dr. Rheumatology wanted to know who ordered "those blood tests" last time we saw him. I explained who we had taken Jillian to and what we were seeing her for. He proceeded to lecture me about the reliability of such tests, the risks of doing an elimination diet and reminding me that our focus should be caloric intake and growth.
I left that appointment pissed. When I get pissed, I eat ice cream. Oy.
I've been asking about genetic testing for a year a half. Dr. Rheumatology didn't want to do it. It's expensive, he said. Her patterns don't fit Periodic Fever Syndrome, he said. Apparently Periodic Fever Syndrome was the only genetic test he was interested in.
I am all about elimination if what is being eliminated is causing damage to the intestine or distress to the body (not a study, but a layman's source). It's all connected, people! It turns out Jillian has the genetic predisposition for celiac disease. I can't explain what that means. Read here if you'd like all the medical mumbo jumbo. I do know she doesn't have celiac (today). Jillian had an endoscopy/colonoscopy a year ago that ruled out celiac. I also know that because of her genes, if she continues to eat gluten, she has a much greater risk (10x according to HP) to develop celiac later in life than someone who doesn't have the same genes (source). Dr. Gastroenterolgy (GI) was originally scoping her to look for inflammatory bowel disease, which he didn't find. What I never understood was why no one cared that the scope was abnormal. I asked. And asked. And asked some more. Jillian did finally have a follow up barium imaging x-ray procedure. Again, abnormal but not diagnostic. Hmmm...
So maybe this is a piece of that puzzle. Jillian did react to five out of the seven gluten markers tested and she had gluten antibodies in her blood. According to HP, a gluten sensitivity could be contributing to the inflammation of her intestines. I'm not saying that gluten is the root of Jillian's problems. But I am saying if she has a gluten sensitivity, you better believe that it affects her immune response. The one thing all of Jillian's doctors agree on (that's currently five specialists and a whole lot of ego) is that she has some type of autoimmune disorder. We have information indicating her body doesn't like gluten. So we're cutting it out.
It's been a surprisingly easy transition--considering the food changes we have already made in the last nine months. I do freak out when we go somewhere to eat outside of our home. It's going to take a while to feel confident about what we're feeding Jillian and to be organized enough to make sure we're always prepared. We also have information that she has too much bad bacteria in her intestine and not enough of the good bacteria, called bacterial dysbiosis. This also affects her immune response (source). We're taking steps to correct that, too.
I like detail. Sorry if I've bored you.
Jillian has developed some new symptoms over the last two months. She'll be having another endoscopy to look for inflammatory bowel disease.
On an unrelated note, Simon was driven home today by a police officer after losing his way while going around the block on his scooter. Apparently, he doesn't speak our last name clearly. He knew my name was Carrie, but couldn't recall Chris' name. He doesn't know his address or phone number. And the police officer stood outside our home and talked to both Chris and I about labeling his helmet and scooter with more than just our last name as well as talking to him about important information... and then the police officer took only my name and birth date.
Oy. I'm going to eat some ice cream now.
*I'm aware of the controversy regarding the Five Stages of Grief (read if you so choose). It's just the framework to share my thoughts. Don't judge.