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 daughter was diagnosed at a little over age 3. We officially made the diet change the day after Thanksgiving, about 3 months ago.

Describe how your child was diagnosed.

I received the dreaded call from a TEDDY Study phone number about 6 weeks after our TEDDY visit. I was convinced they were going to tell me that one of my kiddos (I have two in TEDDY) was showing antibodies to insulin because I am Type 1 Diabetic. When she said that Madelyn had celiac antibodies I was surprised. I didn't know much about celiac except that I had been tested before and I didn't have it. The TEDDY study likes to have two elevated levels in a row before sending you to a gastroenterologist. I don't like to wait around – especially when it comes to health related items – so I immediately called my PCP to see what we needed to do. I was driving when I got the call, so as soon as I got home I started researching online what the numbers meant. I wanted to see how likely her levels meant she had it. The problem was that TEDDY uses state of the art laboratories that most hospitals don't have access to...so the internet didn't have anything about what her levels actually meant. When I saw my PCP he said, if her levels are elevated she has it – the blood tests are over 95% accurate. I asked if we should see a GI doc and he put a call into them. We went to see the GI doctor and he did an endoscopic biopsy. The doctor could see some damage right away and said he was very confident she did have it. When the pathology came back two weeks later we had our answer...she has celiac disease.

Did your child have symptoms of celiac before the diagnosis?

Yes and no...We didn't know and weren't looking for the symptoms so we didn't notice anything before the call from TEDDY. After learning some of the symptoms we found she had several. She is tiny and after each meal she had bloating – she looked like the children on TV that are in poor countries and starving. We just thought that because she was so small the food had nowhere to go but out. She pooped three to four times a day and they were loose and floaty. I heard stories of how hard it was to potty train for pooping and I was so glad it was easy for us...she went all the time. We never dealt with constipation – I thought we were lucky. She was always tired. She took long naps and slept at least 12 hours every night – even then she acted tired. She didn't like sandwiches. It sounds weird but I could never get her to eat them. I am told she may have known that she didn't feel good after eating them so she refused them.

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

So, our GI doctor said that celiac runs so strongly in families that you should test any first degree relatives. Both my husband and myself were tested. The doctor was convinced I had it because it is also linked to diabetes....but it was actually my husband who has it. We don't know how long he has had it but he had very extensive intestinal damage by the time we caught it. They also found a liver and thyroid problem that they feel is connected to untreated celiac disease. He then had his Mom tested because she has several autoimmune diseases and she also has it. Our son is younger, 18 months, and the testing isn't reliable until around 2 but we think he may have it as well.

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

I think the mental piece – I LOVE bread and gluten filled items and I grieve that for her. But she doesn't mind the diet one bit. She never complains about not being able to have something – even when we skip out on the Costco samples. It is also scary because I feel like you can never control it enough. They say even one crumb can cause an immune response. How do you ensure that one speck of gluten didn't accidentally make its way into her food. At this point, we control what we can and do the best we can. In three months we have only eaten out twice – restaurants are still scary places, but I think in time we will find acceptable places.

As far as the practical side of things, lunches and snacks are the hardest day to day items. We always have the car full of snacks just in case we are out longer than we expect. We can no longer just swing by the closest restaurants and grab a quick bite – so we always need to have something to tide her over until we get home. Lunches are a quandary everyday because we can't do quesadillas – her old favorite – or sandwiches. We are left with hotdogs without a bun or nachos. I hope to build up some more ideas here soon.

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

That kids adjust so much better than we give them credit for. Madelyn polices things herself already at 3 ½. She asks if things are gluten free. She doesn't eat anything she doesn't know is safe unless she has asked an adult. She hasn't mourned the loss of gluten for even a second. She accepts this as her reality and is ready to take on the world.

Going gluten free is a whole new way of thinking and eating. But once you make the change- I would say about 6 weeks in – it isn't that hard. You do a little more baking, a lot of cooking at home, and you grocery shop in a whole new way – but these aren't bad things, just different.

Did you change your whole family to gluten free food?

Yes and no. I make one dinner every night and it is of course gluten free. I struggle with the idea of allowing crumby gluten filled items in the kitchen – regular bread, bagels, treats – just out of fear of contaminating my kitchen. So, I bake gluten free bread and treats and we all just eat those. There are some snack foods that are gluten filled in our house for our 18 month old – goldfish, graham crackers.

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 are enrolling her in preschool next year. This was and is a stressor – again the idea of how do you know the snack table was cleaned before snack time. But, I researched a ton of preschools and found one that I feel like can keep up on her dietary needs. I will provide all of her snacks. Now, she also goes to a mom's group where she is in daycare for 3 hours a week and they give the whole class Fritos for snack – which are gluten free. Honestly, we haven't had any birthday parties to attend yet. With family gatherings I usually bring bread or something to add to the meal. I also have in-depth conversations with the cook to make sure they understand what to look for and so I know what's on the menu.

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

I found the University of Chicago Celiac Disease Center soon after we got the TEDDY call. They have an amazing website, as well as hotline. They wrote a children's book called The Trouble Jack Had that does a great job of explaining to kids what celiac is. They also sent her a great gift basket with samples when she was officially diagnosed. Their website is: www.celiacdisease.net/

I was lucky enough to distantly know someone whose daughter also had been diagnosed with celiac disease two years before me. It was great to have someone get me pointed in the right direction. I would highly recommend seeking out other parents of celiac kids to get started.

The Gluten Free Living magazine is full of great information about celiac disease, but it's a little expensive and only published quarterly.

We also order a lot of our snack and baking items from Amazon.com. I didn't even know they sold food until she was diagnosed! They often have the best prices and I enjoy being able to order in bulk.

Pamela's Products and her website http://www.pamelasproducts.com/ are a great place to start when you need baking mixes and recipes.

There is only one book about kid's and celiac disease and I found it to be worth the read. Kids with Celiac Disease by Danna Korn

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

This is an awesome Chocolate Chip Cookie Recipe from Pamela's website:

Toll House® Style Chocolate Chip Cookies

1/4 cup butter
1/4 cup white sugar
1/4 cup brown sugar
1 egg
1 teaspoon vanilla
1-1/2 cups Pamela's Baking & Pancake Mix
1 cup semi sweet chocolate chips
1/2 cup chopped walnuts

Cream butter and sugar, add egg and vanilla and beat. Add Pamela's Baking & Pancake Mix, incorporate slowly and then add chocolate chips (and nuts). Place scoops of dough on a lightly greased cookie sheet. Flatten. Bake at 325° for approximately 12-15 minutes. Let cookies cool slightly and use a spatula to remove from cookie sheet.

Another good TEDDY visit!

Another great visit! At least I didn’t jinx us like I thought I might here. My son did great with his blood draw again, so well that my husband didn’t understand why another child was upset. He’s only been able to make it for a couple of visits and missed the visits where during the height and weight you’d have thought we were torturing him. Both visits he attended our son was an angel for the entire visit and was fascinated watching/popping bubbles and looking at the blood come out of his arm. I’ve explained to my husband that not every child’s blood draw is this easy and we’re very lucky the visits have gone so well for our son.

I know at some point in the future the blood draw may scare him. It’s been great having blood draws go well so that I know it doesn’t hurt. We think the numbing cream is amazing. He’s almost at the age where I expect him to remember the drill and get excited about picking a prize and our fun trip to the zoo or museum after his visit. I only hope the visits continue going so well for our son as it makes our participation in TEDDY so easy.

Now the hard part, waiting for the antibody results…

Please help! Does your child have celiac disease?

I hope to have more guest blogs from parents in the TEDDY study soon. TEDDY tests once a year for an antibody that can mean a child has celiac disease starting at age two. We’ve had a specific request for real experiences from parents whose children have been diagnosed with celiac disease. A parent of a newly diagnosed child with celiac is struggling and asked TEDDY for help. This parent and other parents of newly diagnosed celiac kids would greatly benefit from your experiences with starting a gluten free diet, what resources you use, how you stay gluten free, daycare/school, eating at restaurants, etc.

If you’re interested please contact me at teddymomblog@gmail.com, email your TEDDY site’s email or call your main TEDDY number. You can write/type out your experiences to a list of questions or we can do it in an interview format over the phone. We will use first names or first initials on the blog to protect your privacy.