Friday, January 20, 2012

Interview with a parent of a child diagnosed with celiac disease

At what age was your child diagnosed with celiac disease? About how long ago was that?

My son was diagnosed at the age of 3, almost 4. He is now 5 so it’s been a year and a half since his diagnosis. He had elevated antibody levels for Celiac Disease at his 3 year TEDDY visit. So, they tested for Celiac again at the next visit 3 months later, and the antibody levels were even higher at that time. We decided to go ahead and do the blood screening one more time at the next TEDDY visit just to be sure, while at the same time consulting with a gastroenterologist to set up an endoscopy and biopsy.

Describe how your child was diagnosed

We had the endoscopy and biopsy done a month after our third elevated antibody test at the TEDDY study, and it was confirmed that he had some damage to his intestines. But, it was not significant. The gastroenterologist thought that we had caught the Celiac really early, so we didn’t see the severe damage to the intestine wall that is usually a tell-tale sign of Celiac Disease. But, he felt there was enough evidence to support the diagnosis.

Did they have symptoms of celiac before diagnosis? Please describe.

The only symptoms we saw were my son complaining of having stomach aches a lot. He would always say, “My tummy hurts” after eating. Then, when he began potty-training, he would refuse to go and become constipated. At the time, we thought it was a potty-training issue, but now we think it was all connected to the Celiac Disease. He also used to be a great eater, eating all kinds of food and flavors. Now, every meal is a struggle trying to find something that he’ll eat. The dietician we consulted with told us he may have some food aversion to different foods/textures because everything made his stomach hurt before. She said that he would hopefully grow out of it, but so far, getting nutritious and balanced meals in him continues to be a battle.

Has anyone in your family been diagnosed with celiac before or after your child?

No. I had never even heard of it before. However, I have since been tested because I was having some digestive issues. The test was negative, but I went ahead with a gluten free diet to see if it helped and it has helped me to feel better. So, I seem to have a gluten intolerance.

What has been the most challenging part of your child’s celiac disease?

Eating gluten free has become rather easy in our house, but there have been many challenges and some that still continue. The ones I’ll mention here are the ones that continue to plague us.
1) I mentioned before that getting a balanced diet in my son has been a challenge. He won’t eat fruits or vegetables without a lot of coaxing. So, we do a lot of fruit smoothies where I hide some extras like spinach and flax seed. Luckily, he likes the other types of gluten free foods that I make, and it’s getting easier to find convenient boxed items that are gluten free so I’m not spending so much time in the kitchen any more.
2) Going on vacation has also been somewhat of a nightmare, depending on where you go. I have learned to appreciate living in the metro area with all of the options close at hand. But, even with trusted stores, they carry different products regionally. We were staying somewhere on the western slope of Colorado one time (either Grand Junction or Fruita) and I went into a City Market there (which is like King Soopers in Denver) and I couldn’t find any of the gluten free products I was used to getting quite easily at King Soopers, even though it’s virtually the same store. The good part is that things continually get better. It seems that if someone doesn’t have something one week, the next time I go in, it’s there (or at least a few months down the road it’s there). Going out of state, I have to arm myself with the booklet the dietician gave us and resort to reading food labels all over again. We try to bring some snacks with us so in a pinch, we’ve got something on hand.
3) Some people ask me if it’s hard for my son when there is a birthday party or something where only gluten-filled treats will be offered. Usually this is not an issue because I make sure to send a favorite gluten free treat of his to the party so he doesn’t feel left out (there are so many options now). He has been a pretty good sport about it and he does really well on his own asking if something is gluten free before he eats something that is offered to him.
4) The only other thing that is a challenge is having to make his lunch EVERY day. The schools offer healthy lunches, but unfortunately, there is something with gluten offered as the meal choice almost every day. Each month, the only time my son can buy the school lunch is if he can get a burger with no bun or a hot dog with no bun. This leaves us packing his lunch 18-19 days out of the 20 days of school per month. And for a kid that doesn’t like to eat the healthy stuff, it is a challenge to keep the lunches interesting and healthy. This past year, he was in preschool, so the teachers would help to coax him to eat and he still brought home whatever wasn’t eaten so I could see. Next year, he’ll start kindergarten which means he’ll be more independent at lunch time. I’m wondering how long it’s going to take him to realize he could just throw away his food so I won’t know how much he really ate.

What do you know now, that you wish you knew when your child was diagnosed with celiac disease?

How easy it is to eat gluten free. It’s really not a big deal any more. I remember when we met with the dietician, we got the booklet that lists all of the additives to food labels that you should be aware of that might contain gluten. Armed with this information under my arm, I ventured out to go grocery shopping at King Soopers. I remember once I got to the aisles with all the packaged food, I was reading food labels and questioning everything and it was so overwhelming. Then I saw all the packaged convenience products we were used to getting that we no longer would be able to have and I just started to cry. I didn’t think there was any way we were going to be able to make this work, or at least I didn’t see a way to make it work without me making every food item from scratch. Don’t get me wrong, I love to cook. But, for a working family, it’s not always feasible to make home-made EVERYTHING every day! After this experience, I learned that King Soopers denotes gluten free products with a “no wheat” label that makes it easy to spot products we can have.

Did you change your whole family to gluten free food?

We eat gluten free for any meals that we eat together as a family which includes dinner every night and any time I cook breakfast items (like pancakes). Otherwise, for lunches or eating out, my husband and daughter continue to eat gluten. Neither of them of shown any signs of intolerance to gluten.

Has your child been in preschool or daycare and if yes how do you keep them gluten free? Also what do you do for special events like birthday parties?

We taught my son if anyone offers him food, he needs to ask if it’s gluten free. If the item is not gluten free or if the person doesn’t know, he is supposed to say, “no, thank you” and eat his own food. He has been very good about asking this on his own ever since the beginning. We pack his lunch every day. Special events, we’ll pack a treat for him like gluten free brownie bites or gluten free cupcakes.

What resources have you found to keep your child gluten free?

There are many good websites that have recipes and blogs that are helpful. On Facebook, I have “liked” these pages and they always post good recipes or interesting topics that come up in your news feed. I also have learned a lot from reading the comments of others on these pages, too:
· Gluten Free Recipes for Celiacs
· Udi’s Gluten Free Foods (love this because they are always asking for your opinion to make their products better or to come out with new products)
· Gluten Freely
· Rage Against Gluten
· Glutenista
· Gluten Free Mom (also a website)
· Glugle Gluten Free
· Gluten Free for Good (also a website)
· Denver Celiacs (also a website)
· The Celiac Diva
· (on Facebook, and website)

Would you share a recipe for a gluten free treat your child enjoys?

This recipe is from
These brownies are better than the gluten-filled variety. I usually don’t even bother with the frosting, but I’m sure they are that much better with it. Enjoy!

Here Comes Trouble Brownies (Gluten-Free)

This recipe comes to us from Valerie Wells.
(1) Melt 1 stick of butter, 2 squares of unsweetened chocolate plus 1 tablespoon coconut oil or other cooking oil in an 8 square baking pan (I put them in the oven for 4 or 5 five minutes while it preheats and I assemble the other ingredients. Be careful not to over heat it and burn the chocolate).
(2) Add to pan:1 cup sugar1 tablespoon unsweetened cocoa powder¼ cup gluten-free flour (half rice flour/half corn starch)¼ teaspoon xanthan gum (optional)2 tablespoons Jell-O Instant pudding mix (I used vanilla flavor)2 eggs1 teaspoon vanilla
(3) Stir until smooth. Bake 27 to 30 minutes at 350F. Cool before frosting.Frosting: Gently soften ½ bag semi-sweet chocolate chips plus 2 tablespoons butter in the top of a double boiler (or a metal or glass mixing bowl set over boiling water). When thoroughly melted, stir in a few tablespoons of powdered confectioners sugar until smooth. Spread over brownies and sprinkle with chopped nuts while still warm.