Celiac Disease Sealed Our Fate

We used to be simple, happy folks living on a farm in Iowa. No real worries, no great consciousness of the world outside of our own. And then our daughter got sick. When she was about 18 months old we started to notice that nine diapers out of ten had diarrhea in them. This had happened periodically off and on for a while, but now it was becoming consistent. My son had had the same problem as a kid for a while and we had been to the doctor with him. Finally determined that it was maybe a milk allergy or giardia or something to that effect. Anyway, I had taken him off milk for a while and tried to disguise the horrid taste of the Metronidazole that they had me give him in maple syrup and, low and behold, he got better and grew up relatively normally. But not Mara. She continued to have diarrhea, and loose weight. I remember many nights walking into her room and she would be standing, crying in her crib with horrible diarrhea all over her P.J.s and then she started vomiting as well. She was a quiet kid. She really didn't do much more than sit and quietly look at books, which was nice for me because I was 8 months pregnant with her younger sister and in the pregnancy fog didn't notice how serious Mara's condition was until sometime after the birth of this fifth child. One day I was changing her shirt and pulled it up as she was facing away from me. Her spine and shoulder blades stuck out alarmingly and her belly protruded out front. She looked like an Ethiopian baby that was starving to death. I thought she wasn't eating enough so we started counting calories and feeding her Pediasure. I made an appointment with our family doctor who noted that she was "failing to thrive" which basically means she had stopped growing like she should have. She did blood work and found that she was anemic with iron deficiency anemia. We started a month long course of giving her iron daily, which was an incredible struggle because it tasted so bad. After a month of that, more blood work. This poor child didn't even cry when she was stuck with needles - she was too weak....I cried, but she didn't. Still anemic. You can imagine my horror, night after night watching my baby getting sicker and sicker. I would lie in her bed with her at night to read her a book and simply cry. All the medical knowledge that I had could do nothing for her except to keep after the medical profession to figure it out. I envisioned lymphoma or leukemia, I envisioned all sorts of horrors that my mind would race over at night long after I should have been sleeping. Thankfully, our family doctor had the foresight to order a screening test for celiac disease and it came back alarmingly high. Celiac disease. Wheat intolerance......who knew? Right? Now, technically, she hasn't been officially diagnosed with celiac because to do that you need to have small intestinal biopsies. I wasn't going to wait around for the month that it was going to be before she could get into the specialist, I took her off wheat immediately which isn't easy in a house of crackers and pasta. I went to the local grocery store knowing essentially nothing about what I was looking for, only that I had to avoid all things that contain wheat, rye, and barley. No graham crackers (her favorite), no bread, no saltines, no oatmeal (because that is typically milled in the same facility as wheat and is therefore contaminated), no noodles, no mac'n cheese, no...... I stood in the isles of the grocery store and I started crying. I couldn't envision a world in which my pasta noodle loving, graham cracker eating kid would have to now live. I slobbered and sniffed my way through the aisles at a complete loss of what to get for her to eat. I needed more information and was borderline on a complete panic attack until I happened upon the popcorn....she loves popcorn! For the first few days she subsisted on a few gluten free cereals that I could find, some popcorn, Pediasure (because, as it turns out, that is gluten free), rice, milk and cheese. She never looked back. Within two weeks she wasn't having any more diarrhea and she started to have more energy. Her color changed from a pasty white to a more rosy glow and I think I may have finally gotten a full night of sleep. Celiac disease, it turns out, is very common and very much under diagnosed. They estimate that 1 out of 10 people has celiac disease and probably doesn't know it. On average, it takes about 11 years for the average adult to get diagnosed with celiac because it can have such a broad range of problems that it can cause. Mara's case was severe, but many cases show very mild signs and can look like a whole host of other problems - joint pain, muscle pain, weight loss, weight gain, intermittent gastrointestinal signs, gas, heartburn, even such things as poly cystic ovary disease and allergies have been possibly linked with celiac disease. Many people carry the genes for celiac disease, but that gene needs to be turned on before you actually develop clinical signs. It is a whole complicated genetic nightmare to try to figure out, but thankfully, the cure is easy.....don't eat wheat or any of its cousins. Mara's diagnosis led us to actually reading the labels of all the food we ate and, you know what, it is really scary to actually read labels! There are things that you cannot pronounce, much less know where or what they come from originally. Most of the un-pronounceables actually come from corn, but there are some that contain wheat, so we had to become very good at additives. The thing is, it is so much easier (and healthier) to eat things that don't contain additives...period. Fresh fruits and vegetables are always okay for Mara to eat, as are cheeses and dairy products, nuts and eggs. She became our living, growing, healthy model for what to eat! Initially, there were not many foods in the grocery store that were "gluten free", but the number and the amount of varieties continues to grow by leaps and bounds due to the number of people becoming diagnosed with this problem. There are now crackers and pasta noodles made with rice flour, or tapioca flour that are just as good tasting (if not better) than some of the regular crackers. There are now cake mixes that are gluten free and taste really great! The hardest part for us was that we cook for a family of 7 and now we had to cook for a family of 6 plus 1. All her meals have to be prepared first and with separate utensils so there is no cross contamination with wheat of any kind. Eventhough she was diagnosed when she was only slightly over 2, it was hard to always be the odd person out at every meal, especially when something really good was made like spaghetti and she would have to put up with eating a fried egg instead. So, I decided that I would try her gluten free diet as well. It required us to make her a "meal" rather than just left overs because I had to eat it too. I have been eating gluten free food for the last year and the oddest things have happened. Several of my chronic health issues have gone away - allergies improved, asthma improved, blood sugar stabilized. Not only that, but I simply can't eat a lot of the goodies that used to tempt me so easily - crackers....out, pastries.....out, donuts.....out. I have lost some serious pounds around the middle. All in all, a good change for me and watching Mara run around the house being as wild and crazy as all the rest of her siblings has made me a believer in what changing a diet can do for a person. So, now, when we decide what we are going to eat, we read the label and if there are ingredients there that require a chemistry lab to produce we tend to NOT eat those products. The less processing a food goes through and the more natural it is, the better it is for you - your body just knows what to do with it. Take margarine for example......have you looked at that label? partially hydrogenated vegetable oil...... you KNOW that took someone in a chemistry lab somewhere going "Maybe if I just put a few more hydrogens on this molecule, it will taste more like butter".....and it does, but at what cost? Now look at the ingredients of butter.....cream and salt.....that's it! You and I can identify cream and salt. Both occurring in nature and therefore something that our own metabolism is set up to deal with. Another one that gets me is high fructose corn syrup - it is in literally everthing these days - ketchup, soft drinks, salad dressings, cereals. Pancake syrup is quite simply nothing but high fructose syrup with maple flavoring! Here's the confusing part - it is the same molecule as table sugar....at least on the outside, but it was created differently (yes, in a lab) and it contains a double bond that, when it is broken down by our body, requires our body to deal with the substance differently than it would with regular sugar. There is too much of it and our bodies utilize it differently - two strikes, in my book, for why it should not be in the food system. But it won't go anywhere soon. Do you know why? ......because it is CHEAP! By God, the very thing that it comes from grows right outside my door in huge quantities.....not only that, but it is subsidized by the government That's right, the government, in all of it's infinite wisdom, pays our farmers to grow something that is chemically changed into something that will sweeten roughly 96% of everything we eat and then wonders why we have an obesity problem, which they will also have to figure out a way to pay for. There is a way to change it, however, and this was brought to light by Michael Pollan in In Defense of Food ....we need to vote with our forks three times daily. If we stop consuming it, there is no money in producing it. This book, and this whole philosophy, is essentially why we have started eating almost nothing except organic food with minimal processing....."if we buy it, they will come" Field of Dreams philosophy, I know, but it will work if enough people get on board. I look at Mara now and I think, "kid, you may have helped us all" because it was due to her that we finally started evaluating what we were eating and what that might be doing to us. I heard recently that eating really good quality food is like taking a bite of health insurance every time you do. I, for one, think they were absolutely right.