To the parents of Celiac kids, it has got to be difficult to find your child ill with a disease that the only cure is a gluten free diet. You have to raise them and protect them. Then you have to turn them into a gluten covered world and hope they make good decisions.
Getting a diagnosis has got to be gut wrenching. The child is losing weight, diarrhea or constipation all the time, and the doctor starts talking to you about failure to thrive. The doctor wants to do blood tests but this small child has no idea why someone is sticking a needle in their arm and pulling out blood. Plenty of hugs, lollipops, and ice cream make the immediate pain go away for the child, but as a parent, the worry is just beginning.
When getting the call that Celiac is a possibility and they want to do a upper endoscopy to confirm the Celiac diagnosis. Dr. Google tells you all about Celiac and how a gluten free diet will cure it. Further, Dr. Google tells you about how how endoscopies go wrong all the time and can kill people, especially children. You push the fears aside and you do it. Because you know that you need to make certain that this child has a proper diagnosis and no stone is left unturned in protecting their health.
When the diagnosis comes, both a relief and devastating.
Its a relief in that you finally can put a name to the monster that has been making your child sick. Why they won’t eat pizza or sandwiches when everyone else will because it makes their stomach hurt. You thought it might have just them being particular, but really they were protecting themselves from harm. They are smart little ones and we realize we should respect that they know how to take care of their bodies.
It is devastating in that they will have this life long disease with only a gluten free diet to protect them from harm. It means that every birthday party, sleep over, and after baseball game pizza party becomes a obstacle course in protecting them from gluten. It means being the weird mom or dad that has to call the host or hostess and request to know what will be served so you can provide a viable alternative.
Also, when they are small, they don’t know that they are different. Their family is their whole world. Their parents provide them good food that makes them feel warm and safe.
As they get older and gain more freedom, they start to rebel against this strict gluten free lifestyle. They are feeling invincible not knowing that you’ve been protecting them all along.
They’ve never tasted real french bread or pizza or Kentucky Fried Chicken. You’ve tried your best to make excellent tasting gluten free options, but the world is covered with easy gluten food they have never had. Their peers may suggest that gluten free is just a fad. They can eat the gluten, it won’t hurt them. Then, they eat things that are not good for them and for a while, they may be okay.
But eventually, the side effects of not adhering to the gluten free diet will catch up to them. They may be surly and as parents you don’t know if its the gluten or being a teen. They start to look gaunt and sickly. They swear they are following the diet, but you know they aren’t. They are sick and there is nothing you can do. The pain, side effects, and just general yuckiness of a glutening cannot be undone – only time can heal that wound. After some tears and a few more mistakes, hopefully they get it. Their health is important and remaining gluten free is the only way to remain healthy.
Parents of Celiac kids, you are unsung heroes in the battle of this disease. You made the whole house go gluten free because you weren’t sure you could keep the Celiac kid safe with delicious gluten snacks laying around the house. Parents send me messages when I post about the need for healthy adult volunteers for a Celiac clinical trial, asking where they can find more information to help advance science for their child. These parents are willing to put themselves in a clinical trial for something that will not help them in any way – only something to help their child. If that isn’t love and support, I’m not really sure what is.
I’ve watched my sister go through all of this with her eldest daughter. Every parent of a Celiac child knows that their child is grateful for the protection from the gluten filled world you provide. They may never say it, but they know you are there to help guide, protect, and love them. So, keep up the good fight for your kiddos and know that many people see and understand what you are going through. Now go be AWESOME!!