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Lynda's Story

 
2/29/2012


My middle school son was very active and athletic. He was playing on a couple different basketball teams at the same time as finishing up a championship football season with PAL. He began running out of energy, having difficulty breathing, had frequent vomiting and frequent trips to the bathroom.

He began having trouble at school in terms of his focus and concentration.  He could not fall asleep, often until 2 or 3 in the morning, and had difficulty getting up in the morning. Much of this I attributed to his super high activity level in sports and/or a growth spurt.

During one basketball practice, he doubled over and said that he couldn't breathe.  His color was pale and his skin was clammy. I took him in to urgent care. From that point, he had blood tests several times per week to try to see what the problem was. His blood work showed that he was very anemic, his red blood cell count was very low and the CO2 in is blood was high. He was very weak and had to stop playing sports.

My son missed 49 days of school in the spring, plus the days that I had to pick him up from school early because he felt so terrible. Even though he was in honors math class, he could not recall simple things like his multiplication tables and couldn't understand the directions given by the teacher. This was all so new to him, as school had come pretty easily to him in the past.

Once, while home alone for an hour or two, he went into the kitchen to get a drink of water and found himself waking up on the floor. He had blacked out. Another time during the summer, he tried riding his bike around the house like any "normal" kid would do. He blacked out while riding and skidded up the road on his arm and stomach.

These periods of excessive dizziness became more frequent as time went on. There were days when he was so weak that I had to push him up to a sitting position in order for him to drink or eat something. Unfortunately, what I was having him sit up to eat had gluten in it, which only made him have a stomachache. If only I had known that the 100% whole wheat bread that was supposed to be so much better for him was really the culprit!

Fortunately, we had a doctor who was very proactive and aggressively searched for possible causes. I had heard others say that maybe he was "just depressed" or that he was "making it up" so he didn't have to go to school. It was a tough time for him and for us because Devon did not look sick! His doctor was very supportive and continued searching for causes and eventually referred him to a pediatric GI doctor at Stanford.

The GI doctor ordered some of the same tests as well as doing an MRI and followed that up with an endoscopy and colonoscopy.  She re-ordered the blood test to look for celiac disease (it came back negative when done early on) and did the genetic test for celiac. Both the genetic and regular blood test for celiac disease came back positive this time, and the biopsy confirmed the diagnosis.

Finally! We had an answer where the CT scans, ultrasounds, blood work, and sweat tests had given us no answers.

Once we took Devon off of gluten, the turnaround for him was amazing! After a couple of months, he began playing basketball again - although at a lower level and only for one team.  He was diagnosed in September 2010, and now Devon is playing basketball at a competitive level and is even being sought out by other teams to have him play for them!

The diagnosis process for us was about 8 months, which is short compared to many who suffer for years, but it seemed like an eternity when we were watching him suffer.  I am so thankful to Devon's two doctors and thankful to God to have my healthy, happy son back! He looks, acts and feels like any other 13-year-old boy now.

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