It all started with a diaper rash. Diaper rash, and two very clueless first time parents.
As soon as Barrett had passed all the meconium his bowel movements were very acidic and left burns on my preemie baby’s bottom. We would rinse the football-sized child in the sink, gently pat him dry, and then lay him on his tummy by the fireplace to air out. Nothing helped. Brannon and I weren’t overly concerned because we had seen lots of diaper rash in our lives. But it continued to get worse so we took him to a pediatrician–who recommended we test him for Giardia. How on earth would a newborn get Giardia? But “doctor knows best” so we went ahead with the test. No Giardia.
Next time we asked for a different doctor. He chuckled at the “paranoid” first time parents and gave us a lifetime supply of Butt Paste samples. (For the record, those didn’t work.) In the meantime the poor little guy did not like to be touched or cuddled and had severe colic.
We went to a new doctor who at least helped us with the rash. He quickly diagnosed it as an acid burn. He recommended treating the rash with A&D for burns and switching Barrett to soy formula. The A&D worked great for healing the rash, but not for preventing it. A baby forum gave us the idea of mixing Mylanta in with it and that solved the prevention problem. But these efforts only masked the symptoms and the soy formula did not make a difference.
In the meantime Barrett’ belly started to bloat. He would eat, and eat, and eat, and still be hungry, yet his weight percentile dropped from the 27th to the 9th. “He’s just more active,” said the doctor. Um, no. He was actually a late bloomer in the physical realm.
The doctor brushed off my concerns so I went to Dr. Google. Using information I found online I started requesting some tests and although he dragged his feet, the doctor ordered them. I still vividly remember the day I drove two hours to have Barrett tested for Cystic Fibrosis. He curled up in pain and whimpered “stomach hurts” the whole way. I cried along with my son and imagined what it would mean if this test was positive. Fortunately, that test came up negative but it meant we were back to the drawing board.
Eventually Barrett’s bowel movements became extremely strong-smelling and it looked as though he had been eating sand. We went back to Dr. Google and entered “sandy bowel movement” which led us straight to the discussion board at Celiac.com. The information we found indicated that the “sand” was a sign of intestinal damage. Barrett had many of the classic symptoms of Celiac, and we also realized that my husband’s sister had just been diagnosed with it.
We went back our doctor who doubtfully ordered a Celiac blood test. Negative. He sent us to the allergist. “Based on testing there should be no food restrictions in his diet.” I’m sure the doctor and the allergist thought we were crazy by this point. But Dr. Google informed us that the blood tests are not very reliable, especially in children under age 5. We decided to forget the clinical testing and go straight to the gluten-free diet.
Within a week the rashes, the sand, and the whimpers started to go away. My son was finally starting to be happy! We considered doing a biopsy to get conclusive clinical evidence but in order to do that we would have had to feed them gluten for a few weeks. Seriously? Why would I do something to intentionally damage my child in order to prove that it damaged my child? The evidence was there. I opted not to do the biopsy.
However, Barrett started relapse and we could not figure out what the problem was. We found Enterolab, a company that does stool testing and research to find connections between gluten intolerance and other autoimmune diseases. It was expensive, but worth every penny. The stool test revealed that he was also sensitive to soy and milk. Once we removed those from his diet Barrett flourished!
But the story doesn’t end there. A little sister came into the picture just after we figured out what was bothering Barrett. Naturally we avoided feeding her gluten and milk for the first year and never gave her a drop of formula. We watched her like a hawk when we introduced gluten and of course, she reacted to it. I started to wonder if there was a stronger connection than just my husband’s sister having Celiac. I put myself on a gluten free diet.
It was amazing! I realized that the slight discomfort I have had my entire life after eating wasn’t normal. Suddenly I had energy and I felt better than I ever had before.
Now we have a third child—a son—who also shows sensitivity to gluten, milk, and other foods. Sometimes it’s a little frustrating to face the fact that all of my children will likely have to deal with digestive problems. But really it isn’t that bad. In fact, we eat much healthier because of it. We eat fewer processed foods, we go out to eat less, we buy more whole foods and prepare from scratch. Once you get into a routine it really isn’t any different from normal food preparation. And now there are so many amazing gluten-free bloggers and products out there that you can eat and do just about anything. In fact, I have written a children’s book of my own to help kids like Barrett celebrate his unique situation.
So if you suspect you may be gluten intolerant don’t be discouraged. There is a whole community out there waiting to help you along the journey!
Michelle L. King is the author of “Barrett’s Unusual Ice Cream Party”, and “Mr. Percy’s Mysterious Glasses”. She has a degree in Early Childhood Education and is a former Kindergarten teacher. She lives in Logan, Utah with her husband and three children. You can find her work at http://www.MichelleLKing.com.
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