Marsha Delaney: Posted on Tuesday, March 15, 2011 4:01 PM

At my daughter’s seven-year checkup, which was shortly after my breakthrough internet-diagnosis, I asked her doctor what she knew about celiac disease. She said, “Oh, you know? That might be what this is.” Her doctor thought this was probable, more importantly, likely. She had so many of the symptoms it was hard to discount celiac as a distinct possibility. She said she would order a blood test to test her for the antibodies.

When a person has celiac disease, their body reacts to the ingestion of gluten by sending out a squadron of antibodies to attack it. Gluten is a protein found in all forms of wheat, barley and rye. The body, for some reason, believes gluten to be an obtrusive enemy that needs to be annihilated. A simple piece of bread, cracker, pasta or anything at all containing any amount of gluten will cause the body to virtually attack itself, damaging the villi of the small intestines. This can hinder the absorption of nutrients into the body, posing a laundry list of issues and symptoms to deal with. Celiac disease is extremely difficult to diagnose (or to know to test for) because of the varying list of symptoms. One person may be constipated while another has diarrhea. One may have recurring headaches or migraines while another has chronic bloating, stomach pain or gas. A person with celiac may have some of the symptoms, a lot of the symptoms, all of the symptoms or none of them. (Although I’m not sure how people who experience no symptoms at all have any idea that there’s anything wrong with them; I’ve yet to figure that part out.) Many people with celiac believe themselves to be lactose intolerant, but after going gluten-free, can find themselves eating dairy again. This is because the damage done to the villi of the small intestines makes it difficult for the body to absorb the lactose enzyme. When the body heals itself (after undergoing a gluten-free diet), the person is often able to digest lactose again.

Although the list of symptoms is overwhelming, the most common symptoms include: bloating and or gas, itchy skin rash, delayed growth, headaches, diarrhea, constipation, poor weight gain, depression, tingling/numbness, pale mouth sores, thin bones, irritability, fatigue, joint pain, infertility and even discolored teeth.

Unlike a food allergy or intolerance, celiac is an autoimmune disease. The good news is that celiac disease can be completely controlled by diet. The only treatment is to completely eliminate gluten from your life. Unfortunately, this is not a diet that can or should be subject to the occasional cheat as a reward for good behavior. There’s no saying, “I think I’ll just have this one cookie.” Every time gluten is ingested, accumulative damage is done to the body. This can create horrible health issues down the road, i.e., kidney failure and certain cancers. If a person is diagnosed with celiac disease, they must switch to a gluten-free lifestyle FOREVER. I was afraid I was going to have to tell this to my six-year-old.

My daughter’s doctor ordered a blood test, but she also told us that if we wanted to hold off on the test (as she would leave it open for a three-month period), we could easily find out if she has celiac, a wheat or gluten allergy or a gluten intolerance by cutting out gluten and seeing if she feels better. This wouldn’t tell us what she had, specifically, but it would get us started to see if gluten, the common denominator in all of the aforementioned possibilities, was, indeed, the culprit. As my daughter’s birthday was a couple of days away and I could test this diagnosis by simply altering her diet, I decided to hold off on subjecting her to a blood test right then when I could do it anytime within a three-month period.

On the way home from the doctor’s, I informed my daughter of our new plan. She did not like the idea. She immediately began to take a mental inventory of all the foods she would no longer be able to eat. “Bread?” There was a brief interval of silence while she presumably thought of every lovely bread she’d be forced to forego in the immediate, and possibly forever future. I then heard, “Bread!” The word “bread” went from a scrumptious, delectable-sounding word to a bitter, angry word within the matter of a moment. She couldn’t fathom a world without bread. Neither could I.

“How can I not have bread?” she complained. She was quiet for a moment.

“Cake!” she yelled. “My birthday! What about my cake?”

“Don’t worry,” I said. “I’ll make you a gluten-free one.” She wasn’t amused.

I decided to go gluten-free with my daughter to make the transition an easier one for her. I thought she might feel better if she wasn’t the only one who had to sacrifice for the sake of her health. I wondered if it would make me feel better as well since I tended to have weird (although not as extreme) digestive issues. My gut never felt quite right; I tended to feel gassy for no reason and I’d already taken myself off dairy because I thought I was lactose intolerant. I knew something was up with me too, I just didn’t know what.

I didn’t know much about gluten at this point, so I really had no idea where to start. Banning bread, cereal and pasta were the only things I could think of to begin our new regiment.

Even with my shortcomings, within a day of switching to a gluten-free diet, (as far as I knew a gluten-free diet to be), my daughter felt significantly better. So did I. Simply cutting out her morning toast and her daily sandwich helped tremendously. She’d already stopped asking for her medicine. Did I mention I was still a terrible novice with a gluten-free diet and really had no idea what I was doing? This, sadly, was exemplified by my attempt at a gluten-free chocolate cake that tasted like a giant, chocolate, soy flour turd. I didn’t yet know that most ready-made and/or packaged gluten-free items, mixes and recipes tasted horrible. Also, unbeknownst to me, I was still feeding my daughter many foods that contained gluten because I didn’t realize that gluten could be hidden and quite difficult to spot. I read every ingredients label. Unfortunately, I didn’t always know what to look for. By the way, don’t bother looking for the word “gluten” as an ingredient. You’ll never find it.

I was careful to avoid anything with the words wheat, barley or rye on the label, but I wasn’t yet aware that malt was made from barley. (I know, stupid me; I could I have not known that?) I was deeply ashamed of myself when I discovered, a couple of months later, that I’d been making her Rice Krispy Treats as a special snack because I thought they were gluten-free. Wrong. I wondered why her tummy got upset after eating them. That should have been my first clue.

Because of my inexperience, my daughter wasn’t feeling completely better. She still had bouts of writhing on the floor in agony after eating, but we were definitely going in the right direction. As I began to hone my gluten detective skills, my daughter’s health magically transformed. I was getting better at spotting gluten on ingredients labels and was, therefore, having fewer accidental ingestions. She still wasn’t perfect, but she was 90% better. She was no longer the writhing-on-the-floor-in-agony child complaining that her stomach hurt. She was too busy playing. She was utterly and completely preoccupied with being a normal child.

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