Haley is the mother of 21 month old Wyatt, who was diagnosed with Glutaric Acidemia Type 1 (GA-1) through newborn screening. Doctors have been unable to explain why a gluten free diet seems to be making such a positive difference to his health. Here is Wyatt's story...
I thought I would share some interesting news with you all, in case there is a child out there like my son. We started my son on a gluten free diet in April and since then, his glutaric acid and 3-hydroxy glutaric acid levels have dropped significantly.
Wyatt is 20 months old and was diagnosed with GA1 through the newborn screen. He has had a rough journey, as I am sure a lot of our kiddos have. He has been hospitalized over a dozen times in his short life and has developmental delays. He has never been fond of feeding, so he had g-tube placement. At the time of the surgery we decided against additional surgery to control his reflux, as he would vomit after almost every feed. On our own we have been able to control his reflux through thickened formula and medications. These gastrointestinal difficulties prompted our specialist to do an upper endoscopy which found that my son had blunted villi in his intestines. This is the signature of Celiac Disease. We started Wyatt on a gluten free diet at that point while we waited for test results to verify the Celiac. Those tests came back negative but during that time of living gluten free he had his routine metabolic labs drawn. When the results came, our doctors couldn't explain the dramatic change in his levels, but in the back of my head I knew he had been gluten free and that was the only change that could explain it.
We have continued Wyatt on a gluten free, low protein diet since then and his levels have been consistently lower. Today we met with our metabolic team and still they cannot explain it but they do think the gluten free diet is the reason his levels have dropped. I am not saying that I think everybody should switch there children to gluten free diets, but there may be another GA1 child like my son out there, who for some reason is affected by the gluten and could benefit from this information. We still don't know what caused the blunted villi, but we see it as a blessing in disguise.
Just for reference, his glutaric acid levels went from 2000-2300 down to 1100-1400 and his 3-hydroxy glutaric acid went from the 300's down to the 200's.