When the Gluten-Free & Casein-Free Diet are Mandatory, Welcome to My World

It is both an honor and a privilege to be one of the bloggers for the Autism One community and readers as I have been actively engaged in my local autism community for nine years now. Our family has been on the gluten-free & casein-free diet for ten years. Beyond being the author of The Super Allergy Girl™ Allergy & Celiac Cookbook, a gluten-free & casein-free cookbook (also free of eggs, peanuts, tree-nuts and 75% free of corn and soy), I have been neck deep in saving the life of my youngest child who has had the most serious life-threatening health issues. In this introductory blog, I will share with you my story so that you get a sense of who I am as a person, what I have been through and how I might be able to help you.

I am married with three children: Luke, age 12, Noah, age 10, and Anne, age 7. If my two sons were not on the gluten-free and casein-free diet, and a diet free of food colorings, they would be ADD and ADHD. I graduated from Penn State University with a business degree in marketing. I worked for ten years before I got married working for Xerox Corporation, Bausch & Lomb and Rhone-Poulenc Rorer (a pharmaceutical company). What would be helpful for you to know before I address what I learned from my children is some of my health history.

By the time I was 18 months old, I was receiving allergy shots for allergies to dust, mold, grasses and pollens. Back in the day, it was not common practice to start allergy shots on a toddler, let alone a child under the age of five. It is still uncommon for a mainstream allergist to start allergy shots on a child under the age of five. I received allergy shots until I turned 18 years old, when my allergist released me from treatment stating that I should never allow any physician to ever give me penicillin and that I should consider myself lucky to only be allergic to cats, feathers and penicillin. He didn’t talk about food allergies. Nor did anyone else at that time. I figured out for myself in my early adolescence that coconut and tree-nuts made my mouth itch terribly. Suffice to say that food allergies when I was growing up were fairly rare.

What it took for me to become a mother is a journey and story that would easily fill an entire book. I learned on the way to motherhood that you have to be your own advocate when it comes to health issues. Had I not learned that lesson, I would have never become a mother because I would have had a hysterectomy. I had a 19 centimeter fibroid tumor, which to put into context, weighed 2.2 pounds and was eight times bigger than my uterus itself. Most women with fibroid tumors that size do actually end up having a hysterectomy. In the process of removing this massive fibroid tumor, most of my uterus tissue was removed leaving me with only the uterus lining and a meager amount of surrounding tissue (it was paper thin according to the surgeon). Much to everyone’s surprise, I not only carried my son to term after the fibroid removal, I re-grew my uterus tissue back to a normal, healthy thickness – a feat that medical science cannot explain so said my surgeon. That is both the Grace of God and the power of one very determined woman.

While I learned a few things from my first son Luke in the area of food allergies, it would be my second son, Noah, who offered me my real baptism by fire introduction and crash course in food allergies in a nursing baby. Noah was a happy, healthy baby who rarely cried. One night he had an inconsolable crying jag that lasted for six hours after I ate a “healthy” meal of whole-wheat pancakes. Only much later would we realize that the ingredients - whole wheat, toasted wheat germ, rolled oats, eggs, and soymilk – were all problem foods for Noah. I thought to myself, it must have been what I ate because we had not been anywhere, Noah had no symptoms of a cold or illness, and nothing else seemed likely to cause such a fit in my normally happy baby. Against my better judgment we repeated the exact same meal two weeks later with the same disastrous results.

Off we went to the pediatrician to see if perhaps Noah has food allergies or maybe even celiac disease, which we had researched on-line. The pediatrician could hardly contain his laughter over the suggestion that Noah might have celiac disease. He told us in short order that it would be “one in 500 million” that Noah could have celiac disease. In actuality, in America, the statistical prevalence for celiac disease is one in every 133 Americans. The irony being that Noah would years later be clinically diagnosed with celiac disease. The doctor dismissed food allergies and promptly diagnosed Noah with acid reflux or GERD (gastroesophageal reflux disease). My earnest questions about why does Noah only have a problem when I eat certain foods or why does this only happen once or twice a week were completely ignored. We were ignorant and completely trusted our pediatrician. The doctor ordered one end of Noah’s crib to be elevated and that we start giving him an over-the-counter antacid, which we obediently did. Of course, the antacid made no difference in the symptoms.

I had an epiphany when the pediatrician strongly urged us to put Noah on Propulsid®, a pharmaceutical drug widely used at that time for infants and young children diagnosed with acid reflux or GERD. My girlfriend, a Registered Pharmacist by profession, begged me not to put Noah on Propulsid® until she looked into it for me. What she was able to obtain, simply by virtue of being a pharmacist, information that was not available to a consumer like me, was disturbing. Propulsid® was causing heart attacks and deaths in adults taking it. There was no safety data or studies on the use of Propulsid® in infants and young children. Yes, folks that made me step back and start to trust my own motherly instincts. Suffice to say that I learned a great deal from feeding Noah. I did think I was going to lose my mind at certain low points, but I rallied and made it through.

By the time Noah was two years old, I was cooking and baking exceedingly well foods that were free of all gluten, dairy, eggs, peanuts and tree nuts. Why not have another baby my husband and I mused – “Who could be more allergic than Noah?” With all of my medical experience and education, I was woefully unprepared for how our third child would alter our lives. I was a food allergy and gluten-free expert before Anne was born; yet I would be in for the fight of my life in saving hers.

Luckily, I had the support of the Western New York celiac support group and the local autism community on this journey. I decided early on to bring much more rigor to figuring out what foods worked for Anne or didn’t work for Anne while I was nursing her. What I found out with Noah was that some food allergy babies will refuse to nurse or wean themselves early if you continue to eat what bothers them. I wanted to nurse Anne until she was a year old, so I paid more attention to what I was eating and her physical reactions. By the age of 6 months, Anne was a fat, thriving and happy baby, and I had already figured out that corn, soy and eggs bothered her. I was not eating gluten because right after her birth, gluten became a real problem for me. I felt we were doing quite well.

Just as Anne turned one year, I noticed that she wasn’t so fat. She had really thinned out. Her hands, arms and legs were not nearly so round and fat. This observation was confirmed at her one year well visit when I got the hard facts that Anne had dropped nearly 60 percentage points on the weight charts down from a healthy 75% to under 10%. On top of the drop in her weight, Anne was not able to do activities that a typical child could do like sit up, roll over, get up on her hands and knees and rock back and forth or crawl. I was alarmed by both factors. Her dramatic drop in the weight chart could not be explained by calorie expenditure from her walking or crawling. The pediatrician brushed off both the drop in the growth chart and the gross motor delay as nothing to be concerned about.

I sought advice from my friend Patty Lakey, who had worked for Easter Seals for over a decade at that time. Patty gave me clear marching orders on how to initiate a request to have the county Early Childhood Intervention Program do an evaluation, which I followed promptly. At one year, Anne’s gross motor delay was 50%. The evaluation team told me that there was no way that Anne would be walking or even crawling by age two. In an unforgettable moment, I was clearly told by the evaluation team that I should be very happy if Anne could get up on all fours and rock back and forth by age two! This was completely unacceptable to me. I found a specialist who prescribed megavitamins for Anne, which was the only good thing that this specialist provided. I’m so proud to say that with the physical therapy AND megavitamins, Anne crawled and walked before she was 16 months old.

Anne’s story is much longer than I could tell here so I’ll simply give you the high points. I was not sure that Anne would make it to her second birthday. She was reacting to every food known to man and foods that you probably have never eaten or even know exist, losing 2-3 ounces with each new food tried. We tried a new food every 2 to 3 days using the off days to build her weight back up from the ounces lost from the last food. I had people from the celiac and autism communities bringing me deer meat, rutabaga’s before they were in the grocery store, and other uncommon foods. I had two registered dietitians who were also registered nurses and diagnosed celiac counseling me on what else I could do or try. My own pediatrician told me that there was no one he could refer me to because I was already more of a food expert than anyone else he knew.

At 20 months of age, I was crying because I was afraid that Anne just would not make it when a friend from the celiac group called me. She boldly took action the next morning and got the CEO of the largest medical practice in the state of New York to call me to help. Through this CEO I ended up talking to one of his medical directors who referred me to a specialist in Buffalo. The medical director told me that if the specialist he was sending me to could not help my daughter, that I was in deep trouble. Not the comforting words you want to hear. This same medical director told me in that conversation that NO, the Mayo Clinic, the Cleveland Clinic, Johns Hopkins or Mt. Sinai would not be able to help my child. It was puzzling to me then based on what little I knew about the politics of medicine.

We went to the specialist recommended by the medical director and in less than three weeks of custom treatments, Anne’s chronic diarrhea cleared up, her eczema and rashes cleared up, she started gaining weight, and she could eat the very foods that previously made her eyes water, her nose run, or that produced some other symptom. It was stunning. It would take a long time for us to discover one of Anne’s underlying health issues: malabsorption. Three years ago, Anne was portrayed on a FOX 5 NYC News story, which you can see on my website or on www.youtube.com She was a modern day bubble child. Fast-forward to today and Anne has improved dramatically in her health. She can go places and do things that were not possible three years ago because of her suppressed immune system. We have spent over $100,000 out-of-pocket for uncovered medical treatments for a child who could not eat and digest foods properly over the last six years. That is what we have paid, not what we still owe! And yes, we do have health insurance, but our HMO got away with not paying to keep a 2-year old child alive.

It certainly has been a difficult journey; I have to admit to that. It is one that I am deeply, deeply grateful for having the privilege of experiencing. I believe that God gave me this cross because he knew I would use this particular cross to help many people. How can I help you? What problems and questions do you have that I could help you with? I have put many documents, tools, recipes, and videos on my website to help people with food allergies, the GFCF diet, and cooking and baking. Please feel free to e-mail me your questions and issues so that I can support you. I promise to get back to you as quickly as I can. Many blessings to you all.
Love,
Lisa A. Lundy
Author & Motivational Speaker