Adventures of a pediatrician celiac mom

Adventures of a pediatrician celiac mom

Kirsten Mekelburg, MD

Is an Atlanta-based pediatrician who relates her journey as a celiac mom who shares the disease with her son and a medical professional who cares for kids with celiac disease and other nutritional problems.

June 16, 2014 is a day that I will never forget. I got the phone call I was dreading. I am a mom of two, a wife, a pediatrician, a celiac patient and I was now the mom of a 4-year-old child with confirmed celiac disease.  I hung up the phone and just cried.  I shouldn't have been surprised. I had been diagnosed three years earlier after being sick for decades. I had tested both of my children for the gene and for the disease shortly after my diagnosis. They both came back positive for the gene and negative for the disease. I was grateful yet worried for their future. My 7-year-old daughter is and has always been a great eater. My 4-year-old son had been too, until 6 weeks before his diagnosis. I blamed his new fatigue, weeping skin, bloating, diarrhea and abdominal pain on all the usual pediatric diagnoses I was seeing in my office daily. I blamed his coming to me in the middle of the night on his desire to snuggle, like little boys love. I blamed his poor appetite and "I don't want to eat" on the fact that lots of kids don't want to eat dinner. I blamed his diarrhea and cramping on the stomach virus that had been going around the community for the previous few weeks. I just didn't want to face the reality of what was happening. 

 It took my non-medical husband to notice Eli's health decline, until I finally accepted there was a problem. I found the courage to call the Peds GI who agreed that he needed to be evaluated. I was forced to take off my "doctor hat", put on my "mom hat" and take him for his blood work and exam. The results came back the following week. 

We were in San Diego, California on a family vacation.  "Well, its final", I said to myself, at least we are in California now where we will have no problem with his new eating needs. I was dead wrong and that was the very start of my adventures as a pediatrician celiac mom. 

Do you need to make changes in your home? 

    "I got this now" I told myself when we got home from our California adventure. Eating out there was heartbreaking.  Eli cried when he saw the other children eat foods he wanted. He didn't understand why he wasn't allowed to. I tried to explain to him that he had celiac disease like his mommy did. But he was 4. He didn't like that answer. The wail of "BUT I WANT THE FRENCH FRIES TOO" will haunt me for a long time.  That was our last meal in a restaurant there.  

Now that we were home, it was time for me to revamp our kitchen. Easy, I hoped. With just me being gluten-free (GF) for the previous three years, I had not changed much in our home. Condiments became GF , our meals had often been naturally GF with lots of meats, fruits and veggies, but otherwise we still had plenty of gluten everywhere. The kids enjoyed their "gluten-full" pasta, crackers and cookies. Of course, there were "mommy crackers" but no one really wanted them. Time to change!  Change can be hard, but it is do-able. We purchased a waffle maker to make chocolate chip waffles, a separate toaster (big source of cross contamination in a kitchen), new utensils and a fancy bread maker that is almost out of the box it was shipped in.  Almost all the food in our home is GF now. The rest of the family is getting used to these new changes. My daughter has been known to spit out a bite of a GF muffin and accuse me, "Is this gluten free? I want the real stuff".  

We rarely eat out anymore. It can just be too hard and no one wants their child to feel left out or deprived. We have found a few safe places to go as a family, but most of the time it is not worth the stress. We still have a lot more to learn with how to navigate keeping our home safe for my son and me, but balanced, so my husband, daughter and friends can still have some gluten food. We have dedicated gluten areas, gluten only pots, lots of disposable plates and a lot of "keep the poison (gluten) off the counter!!".

A safe home

What? The Aveeno moisturizer has gluten in it?  How did I miss that big wheat leaf on the front of the bottle?  Eli's skin at the time of his diagnosis was peeling, itchy, weeping and scary looking to non-medical people. I was intent on at least fixing that part of his disease quickly. Lotion, and lots of it, was heaped onto his unsuspecting body three to four times per day. It worsened daily and he cried when I applied it. Then, I saw the bottle. Unbelievable! I thought that with the kitchen revamped, that we were in the clear. I knew better. I counsel parents on it. How could I be so ignorant when it came to my own child?  Time for a whole house overhaul.

Soaps, shampoo, conditioner, hand soap, sanitizer, cleaning supplies, cutting boards, envelopes, utensils, pots and pans. The list can feel overwhelming at first. However, once you realize, remember and work on it, life gets easier and easier. 

Birthday parties

Kiddie birthday parties, or shall I say, every mom's worst nightmare. For non-allergy kids, it is a sugar rush with cake, cookies and pizza. For us now, it would be our first experience at a birthday party watching other children enjoy treats Eli couldn't have. I spoke with him ahead of time to see if he still wanted to go. I explained that there would be lots of delicious food he couldn't try. We decided that we would bring his GF, dairy free pizza from home and a GF cupcake. He chose the one with extra frosting. Our first party went better than expected. We wore our "Gluten Free Rocks" t-shirt. I made sure everyone made a fuss over him. Second party, great still.  Third party, novelty of being "special" has worn off. Last birthday party we went to for 3 months.  Sometimes it's easier to just not have to deal.

We are back on the birthday party circuit again. We bring our own food and a special treat that he gets during cupcake/cake time. If it is a good day, he chooses what he wants before we go. If it is a bad, sad day, we just leave before the cake is served.  Most of the time, he is ok now. 

The most important thing is to be honest with your child in advance and have a system in place on how to handle it. It's not always fun. He doesn't always listen. But for the most part he is happy to be back celebrating with his friends.  

Navigating schoolSchool parties, birthdays and group snacks are harder than weekend birthday parties. These are unavoidable. A 504 plan can help with school lunches (you still need to watch what they provide, since many schools have no clue what a gluten-free diet is) but policies and procedures may be useless when it comes to food brought from other student's homes. Parents and families may mean well, but unless their child suffers from food allergies or sensitivities, your child will probably be left out. We have encountered this already in preschool.  We have learned to keep a bag of GF snacks including gf pretzels, cookies, crackers and candies in the classroom clearly marked in a bag with his name on it. He knows that the bag is there and what to do if food is given out. We have communicated extensively with his school, principal and teachers who are aware that unless it is fruits, vegetables, or packaged and marked as certified gluten-free, then he needs to eat food that we have provided. It is important to keep that treat bag there since there is often little to no advance notification of classroom birthdays or snacks. I pack his lunch each day and he eats what I provide him. He helps me choose what goes in his lunch bag but knows he has to choose a fruit, vegetable, protein and starch. We do not pack desserts, except with rare exception. It is so important to provide optimal nutrition especially early on with the diagnosis. When he goes to kindergarten, I will continue to pack his lunch. But I will worry about the risk of cross contamination in the lunch line.

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