Saving my Daughter
As published in the Fall 2005 issue of Living Without Magazine
by Laura Schmitt
My daughter was a healthy, 9-pound baby when she was born. As she grew older, she developed a plethora of bizarre rashes, had dry skin and frequently suffered from diarrhea. The doctors told us she was fine, and we tried not to worry.
When she was about 17 months and eating normal foods, the diarrhea worsened. I distinctly remember a 7-hour ride when we had to stop many times throughout the trip to wash her and the car seat. Some days, she had up to 15 stools a day. Bathing her every 30 minutes and seeing food come out the way it went in - I knew this wasn't normal.
In addition to the diarrhea, she began exhibiting several autistic traits, which included not wanting to be touched, not making eye contact and not liking to play with other children. Sometimes she would get into a trance-like state, not responding when she was spoken to. There were phases when she would chew and ingest inedible objects. She ate paper from books, gnawed through her clothing, tore apart toys and attempted to eat the plastic. She chewed on anything she could fit into her mouth.
She would sit and play with her toy figures, lining them up precisely in the same direction. Then she would do it again, moving them slightly. She would do this daily for up to two hours straight.
When she was barely one, she could put together advanced 3D and jigsaw puzzles with an ability that astounded most adults. In addition, she knew her letters and numbers by age two and would recite what she saw on buildings and in books. We read to her daily and just thought she was very bright. I was quiet as a child and I thought her antisocial behavior was just shyness.
I could explain away some of these behaviors, but the one I could not justify - and which upset me most -- was her playing with fecal matter. With chronic diarrhea, she had ample material available. I tried every possible approach to get her to stop but I could not get through to her on this. We consulted a range of healthcare professionals but no one could provide an answer to this ongoing problem.
I took dairy out of her diet, then soy. Eventually, I cut out all juice. These changes seemed to help a little bit, but nothing cured the odd behaviors. By this time, the doctor who specialized in learning disorders diagnosed our daughter as autistic.
I turned to the Internet for information and clues. Everything I found seemed to point to autism. That's when I stumbled across the autism diet of no gluten or dairy. It sounded crazy and impossible, but trust me, I was beyond desperate.
We took all gluten out of her diet and for the first time - to our great joy -- her diarrhea stopped. After two months, we re-introduced the gluten and she began getting sick again and the fecal play started up. We returned to the diet and more, removing dairy, soy and other common food allergens, such as corn and egg, based on a blood analysis conducted by ImmunoLab. Our daughter transformed. Within weeks, she became more social, her eye contact improved, her sensory issues lessened and many disappeared. Her desire to line up objects vanished. Her puzzle-working skills were left behind for regular kid-type play. She began interacting with other children. She was finally potty trained (except nights). She started hugging her grandparents and seemed much happier. It breaks my heart that it took me 3½ long years to get her to this point.
As she stayed on the diet, she continued to improve -- but she still had weekly attacks of mild diarrhea and some random spurts of autistic behaviors. It was at this point, when she was 4 years old and had just been through 2 months of full body petechia rashing, that we implemented aspects of the Specific Carbohydrate Diet (SCD),* making significant dietary changes. This final push, in combination with the gluten-free diet, made a huge difference. I basically got my daughter back.
We stuck with the SCD changes for six weeks, at which point we slowly began reintroducing the foods that had previously bothered her, with the exception of gluten and dairy. She now eats a healthy balance of pasture-fed meats, organic fruits, veggies, nuts and gluten-free grains. It has now been over 6 months without any significant problems with the exception of two accidental occurrences of gluten in foods that quickly made her ill.
My daughter has lost her autistic traits because of dietary intervention. I realize that this is not the case for many autistic children and I do not want to imply that children can be cured of autism simply through diet. I don't believe that my daughter was truly autistic. What I believe is that gluten is like a poison to her and causes her to act as if she is autistic.
I've struggled with the decision to share our story because I do not want to raise false hope for any parents. In addition, I've been concerned about compromising my daughter's privacy. But as a mother who reached out to every possible medical establishment for help and received none, I know I would have been overjoyed to learn that I was not alone and that there were some things that parents could try. I'm sharing all this now in hopes it might possibly help another mom and child.
Going gluten free saved my daughter from ongoing pain and illness. It was the smartest thing I've ever done for my child and I count my blessings daily.
For more about the Specific Carbohydrate Diet, see "A Different Kind of Carbohydrate Diet," Living Without, Winter 2005. Also, check out Breaking the Vicious Cycle
My favorite cookbook and cooking reference has been The Garden of Eating Diet