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.
It’s such a responsibility being our children’s mama’s and their advocates. It’s no doubt difficult living in a gluten filled world, but I’m so glad for you that Aneliese is feeling so much better and that your mother’s hunch is paying off! (And I’m never bothered by you doing an ingredient check 🙂
Isn’t it amazing how one little ingredient can cause so much pain? With time, gluten free cooking will become so easy and you will be able to figure out how to make recipes just right and those around you will be use to your family not eating gluten! I’ve found with Joshua and Daniel, when they have had gluten accidentally giving them some digestive enzimes really helps minamize the effect that it has on them. I’m not sure if you have read any of my posts on gluten free cooking, but the best gluten free cookbook by far that i’ve found good recipes out of is “Cooking for Isaiah”. Usually when we go to someones home i bring food for the kids so that it doesn’t put pressure on the host.
Missy, I truly thank you for this post. We’ve had similar questions; about concerns with our daughters health & eating habits, & have quietly tried to solve it on our own.A beautiful sight when I have seen Aneliese this week, was the way she sincerely listens to you and looks right into your eyes, with a smile (& bright eyes), even after you explain something to her.
Hopefully your family will be encouraged by the difficult challenges of gluten free now, so it will become easier soon.
what a story! oh man. I’m crying and it’s only 7:20 in the morning! thats amazing that she’s such a sweet little girl and you are brave to share this story! i know it will help others!
Wonderful Missy. I’m so glad she’s thriving.
Marissa, thank you for sharing. How beautiful is a mothers love for her child. If you feel like you are being judged as going overboard take it as a compliment. It means that you are willing to sacrifice for the well being of your daughter.A friend of mine has a gluten allergy and even the small amount of bread at communion will wreak havoc on her. This allergy has such a shocking effect on a person and yet it seems so few people understand it.
I pray you will get a definitive answer from the medical professionals and will be connected to others who can support you guys in the diet changes.
WOW! Good JOB, Missy. I am so thankful that you were able to recognize those signs as pointing to the need for gluten free food. So thankful that you have your sweet Aneliese back. Going gluten free sounds like a lot of hard work, but I agree that it would be worth it for her health. I am so glad you are the kind of mom who cares enough to work so hard to help her heal naturally. Thank you for sharing this part of her story, and may God give you courage and grace and time and peace as you continue in this labor of love.
I don’t know what to say. Thank God for your perseverence and love. May her little body be healed and may He give you the patience and wisdom needed to continue to be the great parnets you ARE!
Thanks for sharing, Missy. You know, I’ve been wondering if Micah has some sort of allergy or food sensitivity, too. Maybe he doesn’t… but the way he wakes up in the night, upset, and often for an hour or two at a time, really makes me wonder if it is something he is eating and is bothering him. I think I should pursue that possibility a little bit more… thanks so much for sharing.