I Dont Know What To Do

[concerned sis]

my little sister has always had 'tummy pain' but we always shook it off, yesterday we were sent to a specialist that said that he had to wait for the blood test results to come in on friday, she is 7 years old and in the 3rd percentile for her weight, we were told not to look the disease up but what could we do? i know that its not as if she will die tomorrow, but how do you deal with the realization that she could die or have brain damadge?

[ravenwoodglass]

Please try not to worry. Having celiac is not a death sentence it is the chance for her to live a very long and healthy life. If she does have celiac or gluten intolerance she will need to avoid eating wheat, rye, barley and many times oats for the rest of her life and yes it does take some time to get used to it but she will be fine. Both blood tests and the biopsy do have a high rate of false negatives so she will need to try the diet even if the results are negative. Do encourage your parents to come here like you are and read as much as you can about celiac and the things we need to do to stay safe. If your little sister is diagnosed or reacts well to the diet then the rest of the family should be tested also.

It is wonderful of you to reach out for knowledge and help with this. She is lucky to have such a caring sister. Welcome to the board.

[AzizaRivers]

I'm sorry your family has experienced the stress of your sister being sick and not knowing why. As ravenwoodglass said, you are a very kind and loving sister to be concerned and want to make sure she's okay.

That said, celiac disease is not life-threatening and does not cause brain damage. It's possible that looking on here you see some people who have had celiac undiagnosed for 20, 30, 40 years or more and are experiencing the effects of having intestine damage go untreated, but it's not likely that your sister is at risk for many complications, and it's not likely that any issues she does have will be serious. Some common side effects of celiac are things like lactose intolerance (not so scary ) It is easily treatable with lifelong adherence to a gluten-free diet as said above, which is not that difficult to adjust to once we get used to it.

Don't worry, everything will be okay!