The Crazy Lady

by Shannon Pojedinec

It was a rainy Thursday afternoon and I had just finished sorting the co-op order which was delivered once a month to my house. I enjoyed the excitement of sorting the orders and seeing the interesting foods that others ordered. I took care to wash my hands and sort The Crazy Lady’s order before I ate my lunch. The Crazy Lady was our co-op celiac and she was always telling me that my 2 year old daughter had a gluten problem which meant either my husband or I had one as well. Her insistence and constant talk about gluten is what earned her the nickname of The Crazy Lady. She was a walking testimonial about the evils of gluten and how going gluten free changed her life.

I was adamant that we did not have any problems. My daughter was very small for her age but then again, my husband and I were small people as well. I am only 5’2” and he is 5’9” and we are both on the petite side. She was a normal child, just smaller. When The Crazy Lady mentioned her big belly, I was sure that she had no clue about what is normal for children. This was a very typical toddler distended tummy. I see them all of the time. I am obsessive about healthy eating, there is no way that the healthy diet which I lovingly prepared for my family could possibly be hurting my daughter.

I would like to say that this journey began when I became pregnant with my second child and my daughter weaned. But in truth, it began when she was a few weeks old and the pediatrician assured me that the constant screaming, crying and back arching gassy fits were just that great mystery which doctors like to call “colic”. He gave me a prescription for an anti-spasmodic and told me to wait it out. The nurses looked on me with sympathy as I left the office with my little bundle of suffering baby who would break out in shrill screams at any given moment like a time bomb. I went home that night, sat in my chair and sobbed with my sweet, perfect little girl who was not being heard by anyone else except her mother, who was not willing to chalk it up to a great mystery. My intuition told me that something was going on and she was trying to tell me.

My husband had some problems digesting dairy, it did not keep him from eating a bowl of ice cream every night but he paid for it daily. So,I took the dairy out of my diet. It took me an entire two weeks to find the hidden dairy in my diet that was passed on to her through my breastmilk. I naturally went to soy milk and I learned to love it. She became a happy baby and I started to enjoy motherhood for the first time. Shortly after her first birthday, I noticed she was reacting to something again. We took away all of the soy from her diet. Once again, she was a perfect child.

Then, she weaned at two and a half. Suddenly, I had no excuse for the loose bowel movements, the chipped teeth (both my husband and I have perfect teeth), the fits and temper tantrums, the big belly and the circles under her eyes. When we finally decided to pay attention to the possibility of gluten being the big culprit, she was in bad shape. She would lay in the bathroom floor screaming that her belly hurt. Her stools were tan and always loose, floating on the surface of the water. Then there was the attitude and the fits. It was not rare that she would have a meltdown before we even got out of bed in the morning. Anything would set her off and she was very tiring. There were days that I would confide in my husband that I did not like our daughters personality. My intuition had been ignored long enough. So the next step was seeing an allergist.

When I went to the allergist, he told me there was nothing he could do for us, I would have to see a pediatric gastroenterologist who was 3 hours away. We went ahead and did the skin prick allergy test, this came up negative for everything except goats milk. I had to laugh, I knew this test was not the right one for us. Without a doubt, dairy and soy were a big problem. The allergist looked me in the eye and said the words I needed to hear, the validating statement that has stayed with me, “You are her mother, if your intuition tells you that something is wrong with your child, do not stop until you find it.”

I refused to have an endoscopy performed on my daughter, so I found the least invasive method of testing possible. There is one lab in the country who will do stool testing and the samples are collected at home. We had to pay out of our pocket for this expensive test but we were desperate for anything. I knew that we could not go gluten free until we sent off the sample for the test as you must have gluten in your system to properly test for a reaction. So the day that we mailed off the sample, we went gluten free. This was nearly impossible. I did not go completely crazy at first. I just cut out the most obvious sources. I began to see some results. When I received the test results, it was no surprise. They were positive for antibodies to gliadin, the most problematic protein in gluten.

I wish I could say that we just cut the gluten out and lived happily ever after. That is true for the most part but it took a transition period. I became depressed every time I tried to feed my family. I dreaded the kitchen yet, I was spending more time than ever in the kitchen. I started with the cabinets and cleared out all of my bulk grains. I cried as I boxed up my organic couscous, barley and so many other staples that were the foundation of my cooking repertoire. Each time I would get online to find a list of foods that we could eat, I would find a list of foods that I had to get rid of from my kitchen. It was the hardest period of my life. My daughter was sick from what I had been feeding her, everything I thought I knew about food was poisoning my family. Our healthy diet was a source of great pride for me. Somehow, recipe by recipe, I found my courage in the kitchen. There were many flops but every day brought a new challenge and often, a new victory over the constant obstacle of learning how to feed my family. We found that corn products were also a problem. As of today, we no longer eat; corn, dairy, gluten, soy or food colorings.

Now I know that gluten was probably always the problem, the gluten intolerance gave way to the other food issues. We will never be able to eat dairy as most gluten intolerant people benefit from a casein free diet as well. Casien is one of the major proteins in cows milk. But we hope to be able to enjoy corn on the cob from our garden one day, after we have healed. I am happy to leave behind the bad foods. People often ask me if I miss those old foods. I do sometimes but every time I have tried something with gluten in it since going gluten free, I get a headache. Food intolerances are a form of aversion therapy.

It has been a year since we became a gluten free family and the benefits are so amazing that I am now The Crazy Lady who tries to drop subtle hints about others who fit the gluten intolerant description. I can go on and on for hours about what a tremendous difference it has made in our lives. My daughter is the biggest advertisement for the gluten free diet. The circles are gone, she is filling out, her eyes sparkle and her skin glows with health. However, the best change has been in her temperament. We have disagreements and she still gets into trouble but she is able to handle her feelings. She is no longer out of control with her emotions. She is one of the most delightful people I have ever met. I adore her personality and I love being gluten free!

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