Let Me Start At the Beginning of the Story


Marsha Delaney: Posted on Sunday, March 13, 2011 5:27 PM

I realized that I needed to back up and start at the beginning of this story. I’d begun writing a gluten-free cookbook for parents of kids who are gluten-free, but since that project took a back seat to my GF baking company endeavor, I decided to post some of it here to share my personal glutenous story with the world. If nothing else, it’s a rather interesting tale of how my family came to be gluten-free.

Like most people, when I first heard the word “gluten” or the phrase “gluten-free” mentioned, I didn’t pay the slightest bit of attention. Who cares? Gluten has nothing to do with me. I don’t have the time or the energy to bother listening to peoples’ half-baked notions about gluten-free diets or fads. “Blah, blah, blah,” was all I heard. I thought gluten-free was just another stupid dietary taboo that the latest and greatest health gurus wanted us to buy into for no other reason than to buy their book or to follow their enlightened teachings. No, gluten-free had nothing to do with my life…until just before my daughter’s seventh birthday.

Our little girl, although healthy in every other way, had been plagued with digestive issues from early on. We didn’t think much about her tummy upsets at first. We thought she had bad gas (and whoa, did she). Even as an infant she seemed to have constant gas pain. As she started to get older, her complaints grew increasingly bigger and they became more frequent. “My tummy hurts,” she would often complain. I thought she might be lactose intolerant. I switched her milk to a lactose-free version and cut out cheeses, yogurts and ice cream. This helped, but it didn’t appear to do away with her tummy upsets completely.

I took her to her doctor, whom I adored and trusted entirely. She said she probably had indigestion and advised me to give her bland food for a while: dry toast, crackers, plain pasta. (Notice the heavy gluten trend of the advised fix.) When that didn’t work, I took her back to the doctor who told me she was probably backed up, a.k.a. constipated. Her belly protruded slightly and she could feel her backed-up bowels by touching her abdomen, but she suggested an x-ray to confirm the constipation diagnosis. Yep, diagnosis confirmed. She was, indeed constipated. I gave her laxatives. That cleared her system briefly. She felt more comfortable, but not much better. Her doctor advised us to make sure she was eating plenty of fiber. She wanted us to give her whole wheat breads and wheat pastas (as the white starches tended to cause constipation). Okay. We did that. She still complained.

When it got to the point of our daughter writhing on the floor in agony after eating or drinking anything at all and bombarding her with questions relating to the frequency of her bowel movements: “Honey, have you pooped today? How much? What did it look like?” I decided it was time for another trip back to her doctor. She asked a lot of questions, examined her, and concluded that she must have been suffering from acid reflux.

Our daughter would often say, “It feels like my throw-up is coming up.” That, apparently, was a common phrase children of this age used when they suffered from such an affliction. Her doctor prescribed Zantac, a prescription antacid, to take twice a day.

The Zantac helped her some, but she would awaken in the middle of the night begging for an extra dose. When morning came, she couldn’t wait for me to give her the foul-tasting medicine.

The doctor’s remedies were helping minimally, but I knew something else must have been going on. I couldn’t let our daughter suffer any longer with whatever it was she had. I had to get to the bottom of this. This wasn’t normal.

I went online, desperate to find anything that might relate to our situation. For some reason, probably from half-listening to some health guru’s comment about gluten being a new-age dietary no-no, I typed it in. Up popped celiac disease. I read the list of symptoms. My daughter had an overwhelming number of the listed symptoms. She had digestive problems, she suffered from constant tummy upsets after eating or drinking nearly anything, she felt bloated, she had bad gas, she was often constipated (although many people suffer from the direct opposite symptom of constipation); she suffered from migraines periodically (more often than any six-year should); she had eczema (a skin condition, creating dry, red, itchy patches of skin, particularly on her cheeks, on the insides of her elbows and on the backs of her knees). One of the listed symptoms was the presence of irritability and possibly aggressive, hostile behavior in small children. I was blown away. I thought I’d probably found the ailment our daughter was suffering from. Not only did she have all of the above physical symptoms, she had the noted behavioral one as well.

Our daughter had been a horrible toddler who threw the most incredibly angry fits I’d ever seen. I know, you’re saying to yourself, “Yeah, right. What toddler doesn’t do that. MY toddler throws the worst tantrums I’ve ever seen.” Okay, I’m not knocking your kids’ tantrums; they probably were horrible, but my toddler threatened to kill me and everyone else in the house. Sometimes she was rather explicit with the means by which she would use to perform such a task. She wasn’t actually psychotic, was she? My mind wandered there from time to time, but no, she wasn’t psychotic. She was a normal child most of the time. She only said or implied such things during a full-on meltdown.

I attempted to mention this to her doctor on several occasions, but my comments seemed to evaporate the moment they were uttered; perhaps I never fully said them out loud. They may have started out as speech, but then perhaps they cowered to an under-the-breath comment the moment I began to hear myself. I was no longer certain. I can’t blame our doctor for not taking my possible comments seriously. Even I wanted to pretend that I hadn’t complained of her behavior. My daughter was the most well-behaved, shy, sweet little girl in front of anyone else. She only acted like a lunatic at home.

I often found myself, not really complaining, so much as venting the frustrations of a mother with no clue of what to do about the behavior of her little girl. I was doing everything the experts said to do in such situations; at least I was trying to do the things the experts said to do in such situations. “Put her on a time out,” people (and Dr. Phil) would say. I wondered how other parents got their children to actually sit down on a step or on a time out mat. Time outs never worked. I had to physically sit on her or put her in her bedroom and hold the door closed during such an episode. I (very briefly) contemplated a cage of some fashioning. Luckily, I didn’t have a cage, only a cat carrier that was entirely too small. I would have made headlines all over the country. “I can’t believe someone could do that,” people would say as they quietly congratulated themselves on never being brought anywhere close to such measures in their own lives. I wouldn’t have actually done it, but my experiences (and streaming thoughts as I used every ounce of my body weight to pull on my daughter’s bedroom door handle) brought me to a place where I could see how someone could be driven to such an act. How could a single toddler be so incredibly strong? I wondered. I was convinced the scene inside her room was one of her elevating off her bed and spinning her head around while she screamed through black and green teeth that she wanted me to go to Hell. A little possession on a Tuesday afternoon, anyone?

Eventually, after a lot of screaming horrible things (okay, she never actually said she wanted me to go to Hell), and throwing everything in her room against her door, she would calm down and turn back into my sweet little girl, but it often took a long time for the transition back to normalcy to happen. Her horrible tantrums, unfortunately, didn’t improve much over the ensuing years. They got bigger as she got bigger.

Next….my son.

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