I know that the following is long and not something that everyone is interested in so let me add a disclaimer saying that I won't be offended if you don't read. But I want to share a little of Aneliese's story because it was by reading some one else's story that I was able to help her.
Lately I feel like my most common question is; does it have flour or gluten in it? I am ever on the watch for anything that could pass Aneliese’s lips that has any gluten in it. This is the most vigilant I have been about anything to do with food before. I am aware that it is sometimes probably annoying to people and it has taken some getting used to for me to so bluntly ask people what the ingredients are or asking to look at the packaging. Aneliese is quickly learning not to eat anything with out asking her daddy or I first. And even when I am making something, she checks if it has gluten in it. Truly, I never expected to be keeping such a common ingredient out of everything my child eats.
I know there are some who think that I am going a little overboard and/or think it won’t last and while I would celebrate it this could change, I don’t see it happening in the near future. Here is why.
I started noticing in about May that Aneliese really didn’t seem as healthy as I wanted her to be. She was staying at the same weight and would often wake up with dark circles around her eyes and puffiness in her face. I kept just thinking that I needed to make sure that she was getting sleep and that we try not to be too busy. Then we moved and the trouble grew worse. She stopped sleeping at night and would wake up crying. By mid summer, she woke up from almost every nap crying and miserable, same with mornings. I continued to think that she was adjusting and grieving and that we just needed a good routine. Then the fevers started along with the constipation rotating with diarrhea. And the temper tantrums escalated. She became generally fussier and easily upset. By mid-fall, she was refusing to eat almost every meal and was miserable. We would try different things like being firmer, being gentler, consistent, consistent, and consistent. More outings, less outings. We would have a few good days but they were getting less and less. She became familiar with the local emergency when her fevers would get dangerously high. Tonsillitis or a virus or teething or…. you get the picture. I tried not to worry or dwell on it but I felt like I was pretty much failing as a mom and sometimes in my frustration, tiredness and fear, I really was. Basically our sweet happy girl was gone and I wasn’t willing to face that this was who my Aneliese was. I didn't believe that this was life with a two year old; I have observed enough to know that it is not. I was starting to wonder about something like autism.
One day I read a blog from an acquaintance and some of things she talked about with her daughter who had be diagnosed celiac sounded exactly like Aneliese. So I started toying with the idea of dropping gluten from her diet. We decided to try it and with a few weeks she seemed like she was doing better but we still weren’t totally convinced (especially not Dan). It seemed like a lot of work and less tasty food if that wasn’t the issue so one weekend when my sister came to visit, we put her back on it. By mid-week, the high fevers had returned and she was crying constantly. So I asked for some tests to be done but mostly got the impression that I was being viewed as a paranoid mom. We fed her everything that we could think of for a week that would be full of gluten. The blood work came back clear (I have since learned that she had a basically useless test done and will eventually need a different one). I told Dan that I wanted to try a GF diet just one more time and see what happened. The following week was awful. I won’t go into further detail. By the next week she was doing better. By mid December, Dan was agreeing that he saw a change. By Christmas, we kept smiling at each other and saying that we had our girl back. She has since gained weight, is sleeping through the night again, eating everything that we offer her, hasn’t had a fever in weeks, wakes up smiling most mornings and naps and is starting to go to the bathroom normally. I have had people comment on how happy she is and how bright her eyes are. There have been a couple of days where she has accidentally gotten something and it seems to affect her but for the most part, she seems almost well. Don’t get me wrong; she is still a two and a half year old. She is still learning boundaries and testing limits; occasionally she will try to revert back to the cranky girl. But the difference is that now, we can talk to her and she responds. She looks into our eyes readily when we are dealing with something. A brief time out suffices rather than an ongoing battle where no one wins. I can hardly write this with out crying; she holds my hand now and not only accepts hugs and kisses but offers them. She tells us that she loves us. She went to Sunday school for the first time in months She laughs and dances instead of sitting on the couch crying or whining. All these things had mostly stopped and honestly I didn’t realize how bad it had gotten until it got better. When I get discouraged because recipes flop and I hate rice flour, I only need those little arms squeezing my neck tight to remind me that I will eat rice flour for rest of my life if I need to in order to have a happy, healthy little girl. I know that most people couldn’t see what I saw in the last eight months but please, know this. If it seems like I am obsessed, it is because I only want my daughter to be well. I am just learning how to deal with this and it will balance out, I promise. It will become second nature to know what she can and can’t eat. I will get better at cooking this way and more tactful about sharing with others how she can eat. It seems like drama now but it won’t always be this way. She has not been officially diagnosed celiac and maybe she isn’t. That would be wonderful because maybe her little body could heal and she could grow out of it. Until then, I plan to continue to monitor what she eats closely, work on making nourishing and tasty GF food, enjoying my girls, and being so thankful that I get to be their mama.