Describe your son’s life prior to diagnosis:
My son’s life was very sad before diagnosis. He was 2 going on 3 and he wore an 18 month sized clothing and eventually went down to a 12t. His joints were swollen/painful, abdomen distended, vomiting daily, and regressed from potty-trained to completely incontinent.
How did you come to suspect celiac disease as the cause of your son’s symptoms?
The PCP completely disregarded the symptoms. Told us they were car sickness. After over a year, I asked for a second opinion and went to the university hospital. He had an EGD and biopsy. Diagnosis of celiac disease confirmed.
It took at least a year and a half from the first symptoms to a diagnosis. I thought my son was dying. He was so weak he couldn’t climb the stairs. His joints were so swollen and he hurt. He slept all the time. No one believed my son was sick until he was extremely sick.
Do you believe anything could have sped up your son’s diagnosis?
If my child’s doctor had listened. I was told I was exaggerating my son’s symptoms and there was no way he vomited daily or had fatty stools.
Describe your son’s experience now living with celiac disease?
After diagnosis life changed for the better. But it took well over a year for my son to begin gaining weight. We cooked at home almost exclusively.
I have a second son that was diagnosed eight years after the first son. We knew what it was immediately after it presented. It was such an easier process. My first son saved my son from years of debility potentially.
