Frog Update- The Results Are In

Approaching the date of Frog's three year checkup Jason and I decided to tighten up on Leland's gluten free diet. That meant no cheating whatsoever. That may sound easy to some, but you can't really explain to a small child why he can't eat the same foods as his brother. Likewise it's not fair to an older child to have him eat his favorite foods far away from his little brother. We decided though, that it was the right choice despite the challenges.

About a week after we started being insanely strict we started to see improvements. Frog began sleeping better and having less stomach problems. His sleep study was scheduled for two days later. It took a while to settle him down, but he actually took the ordeal like a champ. He endured the half hour of hooking him up without much protest. We were instructed that his cannula had to stay in, so I fought with it several times in the night. Aside from some occasional fussing he slept pretty well, just as he had done the two nights prior.

We left the sleep center the next morning sure that results would come back normal. We were honestly just happy he was finally getting some rest, and as a result, so were we.

A few days later we took Frog to his swallow study. I wasn't really sure what to expect. He has always been difficult about food. I took some of his favorite things to eat with us, knowing full well he may not take a single bite. When we got back to the room it was explained that they would take a video x-ray of him eating to check for anatomic abnormalities.

Frog resisted for several minutes, but he finally relented and ate and drank the items we gave him. Let me assure you that visit was only a success by the grace of God. He would not have cooperated otherwise.

The following week we were back in the doctor's office to get the results. As we expected the sleep study came back normal. We were a bit taken back by the swallow study results. They were normal despite his frequent vomiting while eating and regurgitation of food. We left the office puzzled, but discussed that most of that behavior had in fact subsided over the last couple of weeks. I was thankful that nothing serious was wrong, but I still had questions.

Could the strict elimination of gluten really have made that huge of a difference in his overall health? I knew that the week he had seen the allergist he was back on gluten and had broken out in a rash and had breathing problems, among other things. Could serious issues like obstructive sleep apnea and swallowing difficulties also be effected? I turned to Google.

I found this study that showed, "These findings suggest that a gluten-free diet may improve OSA-related symptoms in children with celiac disease." It explained that improvement was so significant that, "a gluten-free diet might have the potential to improve OSA symptoms in children with celiac and thus serve as an adjuvant therapy for OSA or even replace adenotonsillectomy as the first line of treatment for OSA for those children."

Then I ran a cross this study that says, "Both celiac disease and eosinophilic esophagitis are caused by aberrant, but distinct, immune responses to ingested antigens and can be responsive to restricted food intake. The aim of this review is to assess whether there is an association between these two pathologies. In the majority of the studies examined, including the studies in pediatric population, the prevalence of eosinophilic esophagitis in subjects with celiac disease was about 10-times that of the general population." Later it says that Eosinophilic esophagitis is a chronic inflammatory primary disorder of the esophagus, presenting with dysphagia and symptoms mimicking those of gastroesophageal reflux disease, including vomiting, regurgitation, nausea and epigastric pain. 

We discussed celiac testing with Frog's allergist. He said to have his primary doc order the test, which he did. Then it was explained that Frog would need to eat gluten for six to eight weeks before taking the blood test.

You have got to be kidding me!

There is no planet on which I'm gonna put him through being that sick for a test. There is not a doubt in my mind that he has celiac disease. We have seen firsthand that a diet consisting of gluten causes severe allergies, asthma, and constipation, as well as sleep apnea and difficulty swallowing. Of course I would love to have a definitive answer, a document to present to future schools to justify his dietary restrictions, but for the time being that's not feasible.

All we can do for now is stick to the diet and hope that some day soon we have a better testing option. For now, my baby is feeling remarkably better, and that's good enough for me.