My daughter was diagnosed with “Benign Congenital Hypotonia” at 19 months when she wasn’t walking. She had stomach aches and diarrhea from 3-4.5 years old–at 4 the GI doctor wouldn’t test her for anything when I consulted him about her diarrhea and constant stomach aches. She was diagnosed with “Sensory Integration Disorder” at 4 years old. I spent years taking her to physical therapy and occupational therapy to help her improve her gross motor delay and deal with her sensory problems. It helped a little, but she was still falling and had low muscle tone at 5.5 years old.
When they discovered her brother had two genes for celiac, I started to research celiac. An article in the Official Journal of American Pediatrics made me realize her falling and hypotonia and gross motor delay were classic neurological symptoms of celiac. We put her on the gluten free diet and she got better. Her falling completely disappeared several months into the gluten free diet. Six months on the gluten free diet, she FINALLY has muscle tone in her legs–she has completely lost her diagnosis of hypotonia. She is no longer bone and baby fat. And her hair is finally growing.
Because my daughter never ate bread and was on a low gluten diet, typical celiac tests were negative. But, finally a GI doctor who tried to rule it out did the gene testing through Prometheus. Both she and her brother both have two genes for celiac (DQ2/DQ8.) And all their symptoms resolve on a gluten free diet. Many kids under 3 who have celiac test negative on the typical tests for celiac because it takes years for the antibodies to develop.
It is crucial to do testing before you go on a gluten free diet if a diagnosis is important to you. The gene test can be done in addition if you have symptoms of celiac but test negative on typical tests or if you are on a low gluten or gluten free diet. If you have the genes and the symptoms you could have non-celiac gluten intolerance or celiac which both respond miraculously to a gluten free diet.