R.E. (A Family's Personal Story of Celiac Disease)

We have 2 teenagers who were diagnosed with celiac 6 and 4 years ago. They both had different symptoms. Our son would complain about stomach aches probably only about 4-5 times a year, but they would put him out of commission for pretty much the whole day. It wasn't until after he was officially diagnosed at age 12 that we could, in hindsight, see his past symptoms. For one, he was a terrible teeth grinder. You could barely sleep in the same room as him. Within about 1 week of being on a gluten free diet, this disappeared. Also, he had an unbelievably itchy anus from about the age of 3 or 4 until he was diagnosed. It was very uncomfortable for him and we had mentioned it to the doctor on many occasions, to no avail. His finger nails were in very bad shape. We thought he had psoriasis. His fingernails were malformed and looked really terrible. Now, at the age of 18, he still suffers from the damage that undiagnosed celiac had on his teeth. His enamel is in pretty bad shape and will never truly get better because the damage has already been done. He was very small for his age as well and fell on the growth charts at about 4 years of age from the 50th percentile to just below the 10th. A lot of hindsight. At that point, his predicted height was approximately 5'5". He is now 18 years old and 5'10" because he was diagnosed before he hit puberty.
Our daughter is essentially a silent celiac. We have yet to really recognize any true past symptoms in her, but she had a positive blood test followed by a positive endoscopy.
Our 7 year old has stomach problems as well and is quite small for her age now. We have had her tested, the last time at about age 5, and all were negative. Lately, it has gotten worse again. We are taking her to the doctor on Thursday. I guess it's time to re-test. Yikes!

Steve's response: R.E. thank you for sharing your personal story. Stories like yours really help my visitors (and me) understand more about the symptoms and the complications of having celiac disease, especially the newly diagnosed people that are just learning about it. I can certainly can relate to some of the same symptoms that my son possessed prior to being diagnosed.

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