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Celiac Disease Program and Support Group

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Flower How to Explain Celiac Disease
Telling a Young Child
When explaining celiac disease to a very young child, keep it simple. Explain to your child that the physician found out what had been making their tummy sick. Certain foods are made with an evil ingredient called gluten. It is the gluten that is making your tummy feel sick. We are so happy to finally know what has been making you sick now so that we can make you better! You can't eat anything with gluten in it. Not even crumb (or show them a tiny bit with your hand).

At this point you might explain that the old bread/cookies/crackers etc. they were eating have the bad ingredient- gluten. For almost anything they can't eat, you have to create a SAFE version that is gluten-free. If at all possible, try to have a few samples of gluten-free cookies/crackers/candies/chips available.

There are several kid friendly snack foods that simple are gluten-free and it reassures them to see that they can still eat potato chips or Fritos, gluten-free candy, etc. Tell your child that you are learning every more and more about foods that are safe for him or her to eat everyday.

Telling an Older Child
Be more factual, but still upbeat and positive. "We have good news! We found out what has been making you sick. It turns out you are intolerant to gluten which is an ingredient found in many things. The doctor says that once you stop eating the foods made with gluten you will feel better. A lot of the food you were eating contained gluten as an ingredient, but there are still many that do not. You will have to be very careful about not eating any food you do not know is safe. The smallest amount of gluten in your diet will keep you sick even if you don't feel as sick anymore".

At this point show your child a pile of delicious, safe gluten-free foods- some new versions of unsafe items and some "normal foods" that happen to be gluten-free. Finding where the gluten is hiding is a bit like a backwards treasure hunt- you have to read ingredient labels to see if you can find it under the many names it can disguise itself as. Tell them that the tiniest bit of gluten can make them sick and together you'll become a gluten-buster (or fighter) and to make sure none of it gets into their bodies ever again!

As you are learning about what is safe and what is not, it may take a while to find a safe version of all their favorite things.

Telling an Adolescent or Teenager
You must be honest and lay it on the line. Hopefully they will be so happy to finally get rid of the unpleasant symptoms and will accept the news rather than reject it. Don't forget to go over the increased chances of getting other diseases if the diet isn't followed. Point out that almost everyone has something they are dealing with- whether it's another type of food intolerance such as lactose intolerance or peanut allergy, to being allergic to bee stings or the growing incidence of asthma.

Get your child to start reading labels and calling companies right away to learn about their favorite snack foods. Remember it's their disease, so they need to have some ownership of it. Talk about strategies for school and friends' homes. Admit that you both with be in a learning curve at the beginning of the diet.

Go online to celiac websites and food manufacturers together. Have your child pick some things that look good and research the disease together. Ask your teenager to download some information for you if they find anything interesting. Another suggestion is a subscription to Sully's Living Without, a great, glossy style magazine for people with food allergies. Working in a partnership of exploration may have positive results emotionally.

Cheating: You Can Cheat, but Your Gut Can't Hide

Children with celiac disease have been known to suffer from a variant of "selective hearing". "Oh mom I thought it was safe& you told me it was gluten-free last week& but I thought I ate this at grandma's house." Usually it involves a candy or snack item that they may want.

When children are younger, ask for some of the brand names they like and call the manufacturer to ask whether or not the product is gluten-free. As children get older, try and talk them through the steps so that they can begin to find out if foods they want to eat are gluten-free.

Of course, the down side is you are never quite sure they are actually making these calls without your input or just saying they did. If your child suffers from severe symptomatic reactions you are in luck because they have a painful (and perhaps embarrassing) consequence to their cheating. If, however, your child has few or no symptoms, it is a dangerous situation that may get worse as they enter adolescence and teenage years. Children that are primarily asymptomatic need to be told the hard truth about increasing the onset of other diseases if they cheat. If height is important to them, remind them that one of the first areas of their body to be affected by not eating gluten may be their growth.

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