How my diagnosis saved my child
Written March 2011
As a child, I suffered from constipation with bouts of abdominal swelling and IBS. My mom and the doctors said I had a ‘sensitive stomach.’ I was frequently sick as a child with viral infections and allergies. Ironically,my mom’s common ‘remedies’ were noodle soups and wheat toast.
Fast forward to May of 2003, my thirty-first birthday. I was six months into a difficult pregnancy. I had already lost my equilibrium and had been put on bed rest. By the seventh month, my little girl arrived early, in what was to be a very difficult labor. My husband and I decided against having more children, and instead, we poured all of our love into this miraculous child.
After about three months of age, my baby suffered from extreme constipation. We brought her to the pediatrician several times and even the ER when her bloating and screaming became severe. The treatment was always the same: more baby cereal. After her first year, we noticed she was different from the other children. Her speech was garbled and she would bang her head on the wood floors when she was upset. In fact, up until the age of three, her forehead was always dotted with several bruises.
In her toddler years, she had difficulty with motor skills, such as holding a spoon or putting on her shoes. Despite three sets of ear tubes, and the fact that she passed all of her hearing tests, her speech was still garbled. She fought shoes, jackets, gloves and hats and would only wear soft shirts and pants. She also refused to give up her bottle. If I tried to take it, she would abuse herself to the point that I feared she’d do permanent damage. Although she’d never been officially labeled, doctors had tossed around the idea of high functioning autism or sensory integration disorder.
By age three she’d had oral surgery for bottle rot and she’d also been put in full-time special needs preschool. Thanks to her amazing teachers and therapists, she progressed by leaps and bounds. In the meantime, my health had declined. I was sleeping up to thirteen hours a day and had no energy to exercise. Though I had very little appetite, I’d gained 40 pounds in two years. Doctors told me to sleep less, exercise more. They gave me prescriptions for heartburn and GERD. Soon, I was too dizzy to stand for long periods of time. My hair was falling out and my eyes were so dry, it hurt to blink. Doctors were still baffled, so I mustered the strength to do the research and asked my doctor to test me for Hashimoto’s Disease.
After Hashimoto’s was confirmed, I took the thyroid pills, but still suffered from IBS, hives and fatigue. That’s when a friend (Alice!) suggested I read Dr. Kharrazian’s book, ‘Why Do I still Have Thyroid Symptoms when my Lab Tests are Normal?’ He explained the gluten-thyroid connection.
Looking back on my childhood, I realized that I probably had gluten intolerance my entire life; although, a few years earlier, my Celiac blood panel had come back negative. I asked my gastro if the blood test could have been flawed, but he said I had chronic constipation, not diarrhea, so I couldn’t have Celiac.
Despite my negative blood test, I decided to give the gluten-free diet a try. Within two weeks, my stomach bloating had gone down, and my painful thyroid swelling and antibody attacks had stopped.
That was in February of 2010. By this time, my daughter was in kindergarten, and she no longer had behavioral problems, but academically, she was a step behind her peers. The school district suggested retention again, but I refused, and instead, brought her to summer learning camp.
Despite working with her over the summer, she couldn’t complete first grade school-work without help, and she had to be placed in an assisted reading program. In the Fall of 2010, her constipation returned. Some nights, she would sit on the toilet screaming. That’s when I began suspecting gluten intolerance. Her allergies had also become so severe, she was waking up several times a night to blow her nose.
My chronic sinus infections; however, had stopped. My dental health had also improved. I remember my dentist asking what I’d done differently because my teeth and gums were the healthiest he’d ever seen. If only he’d known I had been flossing less, not more. My daughter’s dentist told me her oral health was declining, despite the fact that I thoroughly brushed her teeth.
Because of her constipation and the fact that she was tall for her age, her pediatricians dismissed gluten-intolerance. At this point, I decided to trust in my instincts and not in the doctors. In January of 2011, I removed all gluten from her diet. Within two weeks, she was no longer waking up at night to blow her nose. Within two months, she was reading books by herself, whereas before she was having difficulty pronouncing words on flash cards. By March, she could write sentences by herself and she was working more independently on her math homework.
Thanks to my local gluten intolerance group, I found EnteroLabs and had her tested- www.enterolab.com . Just as I suspected, the results showed gluten intolerance. Unfortunately, she also tested positive for casein intolerance.
Over the past few months, I’ve had to remove some of her favorite foods, yet she has not complained once. I am so overwhelmed with gratitude because, through my own illness, I was able to help diagnose my daughter, and now she is a healthy, happy, intelligent child.
December 2013 update
She made A/B Honor roll, accelerated reader award, and her teacher tells me she's the best behaved student in the class. :)