Part Two of Our Trip to San Francisco

 

Marsha Delaney: Posted on Saturday, September 22, 2012 1:30 PM

We got lost, we got delayed and we couldn’t find parking, but we eventually made it to the restaurant we were in search of. We were the first ones there. It was a dimly-lit place, so it was difficult for me to read the menu until my eyes got adjusted. Truth be told, it was difficult for me to read the menu anyway because I hadn’t yet resigned myself to the fact that I must now bring reading glasses with me if I want to read anything written down in anything but block-sized letters. For the moment, everyone was behaving themselves, so my hopes were high for a rare evening of good food and even better memories.

We all ate our hearts out, eager to try almost any and everything gluten-free listed on the menu. We ordered so much food…and demolished every scrap of it. I didn’t know my kids could eat like that. The food was spectacular. We ate until we couldn’t eat anymore. By the time we were done, the restaurant was filled with patrons, also obviously enjoying their meals.

As we sat back, taking in everything we’d just consumed, our oldest daughter said, “My tummy doesn’t feel very well.” I internally cringed. Oh, God, I thought. I knew what would happen next, but trying to keep both of our spirits up, I said, “Oh, I’m sure it’s just that you ate too much, that’s all. I’m sure you’ll be fine.” I was wrong.

The kids all fell asleep on the car ride home. The next morning our daughter was sick. Her arms had great big blotches of eczema all over them. They were on her legs and on her torso. Some of them even looked like bruises, they were so bad. She begged for headache medicine. She scooted around the floor in a ball with her comforter over her (as she always does when she’s been exposed to gluten). She spent hours alternating between the bath and shower, trying to rid herself of the agony. After a forty-five minute shower, I went in to check on her. She was face down on the floor of the shower, trying to alleviate her agony (it’s not a tub-shower; it’s a stand-up shower). My poor child. How could this be? I’d asked the waiter about cross-contamination. I’d asked the waiter about the oil they use for frying. He told me they use separate oil. I don’t know how it happened, but my daughter had been exposed. Greatly.

As per her schedule, on the fourth day after exposure, my daughter turned psychotic. Really psychotic. She flipped out for no reason. She threatened to kill, particularly me. She said she wanted to buy a gun to kill me with. I feared for my little one’s safety. She was hostile, violent and mean. She had a razor-sharp tongue that was too cutting to believe. There was no peace. There was no let-up. When I tucked her in and said, “Sweet dreams,” she looked up at me and said, “Go to Hell.” She’s nine.

There was no normal life anymore. My daughter was horrible and my son was hyperactive and didn’t listen. Every single day was torture. It was my own personal Hell that lasted nearly a month. I even began to wonder if I needed to take my daughter to a psychiatrist to be evaluated. I knew it was the gluten, but the length of time this went on for really made me wonder if there wasn’t something else going on. I began to think that this was far more than a gluten issue and that this was our new reality. It was depressing and down-right awful.

Then a beautiful thing happened. Her horrible behavior began to taper off. Each day and week got a little better. She began to play with her brother instead of telling him that she wanted him to die. She began to be happy and normal again. Every day she improved. She finally returned back to my normal little girl.

I just have to resign myself to the fact that we can NEVER eat out. EVER.

 

 

“Sorry, Honey. You Can’t Go.”

 

Marsha Delaney: Posted on Saturday, October 20, 2012 11:36 AM

While standing with my daughter at school a couple of weeks ago waiting for the first bell to ring, another student’s grandmother approached me and handed me a little slip of paper. I opened it up and it was an invitation to her granddaughter’s birthday party at Chuck E. Cheese’s. “Oh, yay,” I said, although internally I cringed.

Chuck E. Cheese’s is not the place to send my daughter. This was Friday morning; the invitation was for Sunday. Not only did sending my daughter to a birthday party at all involve planning ahead on my part, cooking and baking so she could eat while she was there, but Chuck E. Frickin’ Cheese’s? Talk about a gluten cross-contamination nightmare. I couldn’t help but picture it in my head: kids who had just eaten regular pizza (I’m sure I’ve never seen a kid rush off to the bathroom to wash his/her hands immediately after eating pizza in such an establishment), rush around, touching every game with their greasy little hands, then my daughter comes along (after eating the gluten-free pizza I’d made for her), plays one game, wipes her hand on her face, and blammo. Sick and psychotic for an entire month. Thanks for the invitation, but please, no thank you.

Obviously, I don’t blame the parents or the grandmother of this little girl for inviting us. My daughter is her friend, after all. I was simply perturbed at the situation I was immediately thrown into. I had to deny my daughter’s going to her friend’s birthday party. I knew I had to do it. I was going to be the mean mommy, the horrible mommy, the mommy who just doesn’t understand anything. I was wracked with conflicting thoughts and emotions. How could I deny my daughter a birthday party? No, I had to deny her. It just wasn’t worth the risk. Or was it? It wasn’t. I knew it wasn’t.

I thought about how I was going to tell her all day. The situation ate at me. When I picked her up from school, she asked me about it. I took a deep breath, readying myself for my defense and said, “Honey, I’m sorry, but I just can’t let you go.”

“Okay,” she said. Wait. What? Okay? Did she just say, “Okay?” Oh my God. What kid says that?

I was SO proud of my daughter. She knew. She knew she couldn’t go to THAT place and she’d made peace with it. She was fine. She held no grudge against me. She was a rock star.

God, I love that little girl.

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.

Back to My Story

 

Marsha Delaney: Posted on Monday, March 14, 2011 11:11 AM

And now, back to my story:

Two-and-a-half years after having our daughter, we had our son. He was a sweet little baby, of course, a delight to be around. His sister, however, I was convinced, wanted to bump him off. There were times when I walked into a room to find her in a precarious position with him, looking like she was trying to strangle or suffocate him. Of course she wasn’t. She was only two. This was natural, sibling rivalry, I thought. Nevertheless, we kept a close eye on her around him from then on out. “You’re not allowed to kill the baby,” I would half-joke.

Much to my surprise, our son, as a toddler, was just as horrible as his older sister. He had a hair-trigger temper. At first we blamed the Irish heritage. We never quite knew what was going to set him off. He would go from being completely happy to an enraged, little beast. If I cut the crust off his toast, he wouldn’t eat it because I’d cut the crust off. If I didn’t cut the crust off his toast, he wouldn’t eat it because I didn’t cut the crust off. He would be completely dressed for preschool and if, God forbid, I strapped his shoes differently from what he had in mind or if I did them when he wanted to do them, or if he’d decided I’d put them on in the wrong order, that was it. It was all over. “Start over!” he would scream. Unfortunately, he didn’t just mean for us to start over with his shoes. He meant he needed to start everything over. He would then proceed to strip down to nothing, even though I was pleading with him (and not usually in such a nice way), to keep his clothes on because we were already running late.

There was no appeasing him or calming him down or talking any sense into him once he got into one of these moods. He was, by far, the most stubborn person I’d ever known, and he was only three. Where did this come from? I would think. Is he autistic? He didn’t appear to be autistic. His eye contact was great and he could stay focused for quite a long time. Could he have ADHD? The child never stopped moving. Okay, he did stop moving once in a while, but he was usually on the go, running, jumping, climbing and flying. He was a boy; he was a boy with a lot of energy and a determined disposition.

Some of the preschool moms used to joke that I could never hold a conversation for more than a moment. I was the mom sprinting off mid-sentence in the direction my son was running because I needed to get to him before he got to the street. “There she goes again,” they would say. “Oh! He’s off!” I had to make sure I was always wearing shoes I could run in.

Strangers constantly commented on how busy my little boy was keeping me. When we took my daughter to kindergarten every day, my son would either take off sprinting into the crowd or he would sit on his ass on the sidewalk and refuse to move, leaving me to hoist him over my shoulder while he kicked, hit and bit me. I found him to be exhausting.

Even though my children seemed to display behavior that made me want to pull my own head off, I still wanted to get them involved their schools’ extra-curricular activities. I thought the kids would enjoy movie night at my daughter’s school. “Let’s have some fun,” I think I said. Much to my delight, everything was great. Both of my kids sat there and watched the movie (for the most part)…until it was time to leave. As soon as the movie ended, my son bolted out the door of the auditorium. I was carrying chairs and blankets, so bolting after him in the crowd was difficult considering I was also dragging my daughter along behind me. We got to the parking lot to find him jumping up and down on the roof of my car. I wasn’t parked directly in front of the school’s cafeteria where the movie took place, either. He had to have sprinted across the busy parking lot (at night while everyone was backing out of their spaces trying to get home), before mounting my car all by his little self. To make matters worse, this all happened in front of my daughter’s kindergarten teacher. She stood there with me with her mouth open, staring in disbelief. “Oh, my,” she said. What could she do (besides contact CPS) but laugh and help me get the chairs to the car? I haven’t taken them to movie night or to any after-hour school functions without the assistance of my husband, since. It proved to be too dangerous.

Where was I going wrong? My husband and I could both take the blame for our kids’ upbringing, but because I was the one staying home with them and was probably the most directly influential person in their lives, I believed the fault had to mostly fall on my shoulders.

I tried to be a wonderful mother. I worked hard to create a loving, nurturing environment for our kids. I wanted them to have the best, happy childhood they could have. So why were they (and in response, we), so incredibly miserable? I would call my husband at work daily to complain of our kids’ behavior. “You won’t believe what our darling daughter just did,” I would say. I had to share her unruly behavior with somebody. I sometimes called, crying and overwhelmed. He gave me the usual advise of, “Take a deep breath, don’t get too stressed out, put them on a time out,” yada, yada, yada. He even got angry after a while for my complaining to him so often about our kids’ behavior. This, incidentally, pissed me off to an unfathomable degree. Having said that, this confirmed my suspicion. I was a horrible mother. What else could it be? How could I not handle a four-year-old and a two-year-old or a five-year-old and a three-year-old or even a six-year-old and a four-year-old? My mom always told me the terrible twos actually lasted until four. “Don’t worry, “ she would say. “Four is the magic age. Once they hit four, they turn into little angels.” Wrong. My daughter was a pain in the ass at four and at five and even at six. Not all the time, but often. My son appeared to be following right behind. I was at a loss for what to do.

When our daughter was four and hungry, she insisted on going into the refrigerator to grab a snack to eat. As I was standing in the kitchen, frantically trying to get dinner on the table, I wanted to keep her from doing so. Telling her to wait wasn’t doing any good. She kept coming at the fridge while I tried to play defense. I just needed two more minutes. My kids were notorious for ruining their appetites just before dinnertime. It seemed no matter how well I planned dinner, they were always hungry just minutes before I could finish making it. If I’d backed the timing up anymore, we’d be eating dinner at three in the afternoon. If I’d given them a snack this late in the day, there would be no dinner consumption at all. So, in my frustration, when pushing her back and removing her from the kitchen repeatedly was heeding no results, I picked her up and carried her to the backyard. I put her down on the patio and locked the sliding glass door. I went back to cooking. It then dawned on me that that might not have been such a fantastic move on my part. I bolted into the living room (where we had another sliding glass door) just in time to witness her forward swing of a baseball bat, a direct hit against the 1960s sliding glass door. The glass came down in long, horrible shards, some impaling into the hard wood floors on impact. I stood there in disbelief. She stood on the other side of the shattered glass in disbelief. For a moment, I couldn’t move. I couldn’t yell at her or chase her down. I couldn’t believe the severity of what she’d just done. That was it. She was a delinquent, a delinquent at four years of age. I just thanked my lucky stars that her brother hadn’t been sitting on the other side of the door just then.

I had to come to terms with the fact that my little babies were kicking my ass. I got a lot of raised eyebrows when confessing that to people, particularly other mothers. For some reason, I felt a burning desire to share. Call it a character flaw, but I just couldn’t help but be completely open and candid with other people about my childrens’ behavior and my shortcomings. I wanted to be the person who could keep my life to myself, but it just wasn’t in me. “Shut the hell up!“ I would internally monologue, but my brain couldn’t stop my mouth from speaking. Damn. All the other mothers gave me their advice, presumably advice that worked on their children. Of course they did. I was whining to them about my failures. I left the door wide open for their advice. I needed it. I was practically begging for it, so why did their advice not resonate with me?

I needed to be stricter. Okay, that’s fair. I could be stricter. “Consistency, consistency is the key,“ one said. I agree. Consistency is a must, particularly when dealing with entirely inconsistent children.

“You need to get the upper hand back, show ‘em who’s boss.“ Sure. Nothing ever worked.

More…..

 

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.

Does She Have It or Doesn’t She?

 

Marsha Delaney: Posted on Wednesday, March 16, 2011 10:17 PM

A major fringe benefit of studiously reading each and every ingredients label before placing any item in my shopping cart, was that I realized, for the very first time, the amount of chemicals and crap I’d been feeding my family. Why did frozen taquitos have to have 35 different ingredients, most of which were unpronounceable? It became clear to me right off that I wanted to feed my family more natural food. The fewer the ingredients, the better. This basically cut out all pre-processed foods. Not only were they unhealthy based on the paragraph of foreign ingredients that didn’t sound anything like food, but gluten appeared to be present in just about all of them. And fast food, bye-bye.

If you think your kids can’t survive without fast-food, you’re wrong. I thought my kids would implode if they didn’t get their weekly rationing of chicken nuggets. I thought I’d have a hard time surviving the week without the trip to the McDonald’s Playland apparatus (I needed it as much as they did). Guess what? After we stopped going, they stopped caring. They don’t miss it at all. They never ask me for fast-food anymore, and my kids (as earlier demonstrated), are not the perfect little Mary Poppins’ charges.

As my daughter’s health improved tremendously, I was ecstatic. Hip-hip, hooray! We found and fixed her problem! Oh wait. We still needed to get her blood tested to confirm her diagnosis. We did.

Her doctor called me a few days later. She came back negative for celiac. “How can that be?” I asked. She was as surprised by this finding as I was. She then informed me that kids often show false negatives on the blood work and that she believed, if we had her tested again in a few years, she would probably come back with a positive result.

After more painstaking research, mostly online, I learned that I should have had her blood tested right away and I should have held off on switching her to a gluten-free diet until after her blood had been drawn. She’d already been gluten-free for two months. The change more than likely interfered with the test because the test reads the antibodies the body produces to attack gluten. If there was no gluten, there would have been no antibodies to read. Duh. I wished her doctor and I had both been more informed on this little tidbit of information before we changed her over.

“But this is working,” I whined to her doctor.

“I know,” she said. “That’s why I think you need to keep doing what you’re doing. Stick with the gluten-free diet. It’s working.”

“Okay,” I said. “I intend to.”

My daughter overheard me talking on the phone. The moment I hung up she said, “You mean I don’t have celiac?” she asked, practically jumping up and down with excitement. I could actually see the images of pastries, donuts and baguettes swirling above her head.

“Well, no,” I said, trying to figure out how I was going to break it to her that I fully intended to keep her on a gluten-free diet. “But we’re going to keep you off gluten. It’s helping. I’m feeling better, too,” I said.

“I don’t care! If I don’t have it, I want to eat gluten!”

Our lack of a diagnosis was going to be problematic. If my daughter didn’t take it seriously (and why would she since we’d just been informed that she didn’t actually have celiac?), how was I going to realistically keep her away from gluten? She needed to be on-board with this or this was never going to work.

Her dad, it seemed, was going to fight this even more. He was already skeptical about our daughter having anything that ended in the word “disease.” Throw a negative test result in there and I knew there would be no convincing him otherwise. He’s not convinced of anything without a firm diagnosis.

The only other way of testing our daughter for celiac would be by taking a biopsy of her small intestines. I couldn’t fathom subjecting her to that when simply not eating gluten was working, even if it might convince the nay-sayer otherwise.

“Oh, she doesn’t have celiac,” he would say, and he would give her foods with gluten in them. Every time, she reacted badly. Countless times she had gluten in one form or another either from him or from somebody else, and even though she had a bad reaction every single time, he still couldn’t be convinced. Even now he isn’t convinced, although he does acquiesce that her digestive issues are all gone, her health seems to be completely fine, she no longer needs medication, each and every single time she has even the smallest of bites of gluten, she turns psychotic, she throws up, she gets a migraine and she breaks out in eczema, but he’s a tough one to convince, apparently.

I knew our daughter needed to be gluten-free, so I did everything I could to try to make sure she didn’t ingest a morsel. I only bought and served brown rice bread, brown rice pastas, and gluten-free food. I left my daughter and my husband no choice but to go along with this. I was hijacking our shopping list and our kitchen.

 

The Banana Muffins

 

Marsha Delaney: Posted on Monday, March 21, 2011 10:52 PM

Unlike his sister, our son didn’t appear to have any digestive issues, whatsoever. He ate well, put on weight well and never seemed to be followed around by a constant green gas cloud. He was entirely healthy. He was a crazy, hyper, pain-in-the-ass, stubborn little boy who frequently got into trouble at school, but he was completely healthy.

In February, I was called in for a parent-teacher conference at his preschool. Oh no, I thought. I cringed as his teacher opened the classroom door to meet with me. She sat me down and went over his report card. He was performing beautifully. I beamed with joy. She then turned to me and said, “We don’t know what happened, but over the last two months, he has completely blossomed.” I smiled from cheek to cheek. “Have you been doing anything different at home? What’s happened? We’ve never seen this sort of a change in a child over such a short amount of time.”

I thought. What had changed relating to my son? I couldn’t think of anything. My mind went blank. Was he getting more sleep? Nope. He was still a terrible sleeper. Had we become more strict? More consistent? Nope. We were still the same parents, fumbling through the best we knew how. Something must have happened. The last time they talked to me it was because he’d thrown a table at one student, a chair at another and he’d spent playtime hurling dinosaurs across the room, mostly narrowly-missing other kids’ heads. Now I was told he was a sweet, caring, empathetic, ready-to-learn sponge who was willing and eager to soak up every last word his teachers were speaking. What could be the cause of this remarkable transformation? I thought. “Gluten? Or rather, the lack thereof?”

“What?” his teacher asked.

I was almost afraid to say it aloud for fear of it sounding utterly ridiculous. “We’ve had his sister on a gluten-free diet, so he, in turn, has pretty-much been on a gluten-free diet. Could that be it?” I asked her, although, how could she possibly know the answer to that? I was the child’s mother.

Her eyes lit up. “Maybe. I’ll be that’s it. Diet can play a huge role in a child’s behavior,” she said.

“Well, that was two months ago,” I said, convincing myself with every additional word I spoke. That must have been it. Eureka! We may have figured out my son’s behavioral issue as well! God, he had been awfully good lately. How did I not notice that? Wait. I did notice that, but it took somebody else to point it out to me for me to really think about it. He had been unquestionably better, much better lately. He was a sponge. He was ready and eager to learn. It suddenly dawned on me that everything seemed to be clicking into place for him. Concepts that had eluded him began solidifying. He’d been spending hours at home sitting at the kitchen table, pen in hand, meticulously scrawling out every single dinosaur name he could get his hands on. He had five or six dinosaur books laid out in front of him. He’d been painstakingly working on his Christmas list for Santa (10 months before Santa would ever see such a list), and I think he was up to dinosaur number one hundred and twenty-three. Apparently, my brain needed longer than his to click into place. How did this realization not leap out at me until his teacher mentioned it?

I was completely overjoyed and proud of my son. At the same time, I was curious to test this little hypothesis. I hadn’t really thought of our son as being gluten-free since he hadn’t had any issues. He didn’t have celiac, as far as I was aware, but the poor kid was forced to forego a lot of the treats he loved because of his sister’s ailment. As a reward (and a little bit as a test), I decided to make him his favorite treat in the world: banana muffins. The regular kind, not the nasty kind I’d been attempting to make for the two of them since the switch. He thought banana muffins (the gluten-free kind), were the worst things he’d ever tasted in the world. We got home from school that day and I went to work. “As a special treat, I’ve decided I’m going to make you some real banana muffins!”He looked at me skeptically. “Real banana muffins?”

“Yep.”

“You mean the gluten kind?”

“Yep,” I said. He leapt to his feet. “Yeah! Real banana muffins! I can’t wait,” he beamed.

He waited patiently while I made the muffins. He was so excited to see the final product, he grabbed one and wolfed it down. “Delicioso!” he said. He’d been watching Dora. He asked for another. Well, okay, I thought. He and his dad are the only ones who can eat them anyway, so “here you go,” I said. He ate four of them.

I went off to put on a load of laundry and take care of a couple of chores while he watched some of his video. I came back into the room about twenty minutes later to find him completely naked, jumping up and down on the couch, and flailing his head around in a circle. I called his name. No response. I called again. No response. I yelled at him. Nothing. I walked up to him and tried to get him to stop. He wouldn’t. It was as if he couldn’t hear me at all. In that moment, if anyone had seen his behavior, they would have been convinced my son was autistic. I wondered if he was. I’d never seen him act like this before. He couldn’t snap out of it. He couldn’t stop jumping. That was it, I decided from then on, he, too was going to be one hundred percent gluten-free.