The Patient Celiac

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!

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None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor. He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate gluten-free butter, peanut butter, and other condiments to avoid cross contamination. I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our gluten-free/non gluten-free set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then. My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.

Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial. I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients. I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.

Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes. Once a week or so we will make a gluten-free pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort. For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, gluten-free crackers and rice cakes. We always have a few “treats” in our home, usually Annie’s gluten-free Bunny crackers, ice cream, and a tortilla chip of some sort. I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.

I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year. I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases. I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.

I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!