Hello. I’d like to welcome you to the Celiac Parents’ Club–a club that no parent anticipates joining, but a small percentage of us end up here anyway. Right now, our membership is lifelong, but with the positive momentum in celiac awareness and research, we can be hopeful that a treatment, or even a cure, will be a near possibility for our celiac sons and daughters. In the meantime, we need to make the most of our celiac memberships.
I joined this club in 2015 when my eldest son, Noah, was diagnosed with celiac disease at the age of seven. Noah’s story is probably much like your child’s. He was born healthy, but he slowly began acquiring seemingly unrelated symptoms and maladies that I failed to connect until Noah’s damaged little tummy began screaming for help. Sudden, painful constipation was that call, and it was so intense one day that it brought a panicky mom and son to the ER.
Neither Noah’s pediatrician nor I suspected celiac or any other serious condition, and she prescribed the typical constipation protocols of stool softeners, dried fruit, and increased fluid intake. After all, Noah appeared healthy on the outside, so this seemed reasonable.
Four weeks went by and though Noah was drinking what seemed like gallons and eating enough prunes and pears to rouse the bowels of Godzilla, he was STILL constipated and complaining of stomach pains. I was boggled. With blaring mommy instincts, I sought out a nearby pediatric gastroenterologist who also happened to be the only celiac specialist in our area. What a blessing that second opinion turned out to be!
So, after blood work and a confirming endoscopy, Noah was officially diagnosed with celiac disease (Marsh Scale 2-3). Finally, all of the fatigue, aches, pains, and stomach issues made sense! Based on what I know now, Noah’s asthma and ADHD were probably a result of the celiac, too. For my husband and me, this news was both relieving and crushing at the same time. For Noah, being only seven, it was confusing and devastating. This “stinky celiac,” as Noah called it, meant the loss of Happy Meals, Chinese take-out, and carefree eating as he knew it.
I am here today, after surviving an often trying and frustrating time as part of a celiac family, ready to share what I have learned to help others. The fact that Noah is growing and thriving has been worth every one of our family’s sacrifices along the way. To my knowledge, he has only been ‘glutened’ a small handful of times, and I’ve managed to maintain a safe, predominantly-gluten-free kitchen for almost three years. My grocery budget looks more like a mortgage payment than anything else, but paying extra for as many certified gluten-free items as possible, including some even pricier convenience foods, has helped to keep me sane and Noah smiling.
Life with celiac is more complicated than any numbered list can capture, but it’s less daunting if you tackle it in small, but essential pieces. Here’s my list for a happy and safe first gluten-free year:
1) Make sure your child has an official diagnosis before beginning a gluten-free diet.
If you’re suspecting celiac, your child’s pediatrician can order the necessary blood tests—the tTG-lgA being the primary screener.
Here’s where testing can get tricky. If your child has unconfirmed celiac and she is eating mostly gluten-free, she might no longer have the antibodies necessary to trigger a positive test result. I know it’s tempting to change your child’s diet in an effort to relieve their symptoms, but to avoid a delay in your child’s diagnosis, it’s best to test under the guidance of a doctor. I made this mistake with my younger son and he had to eat gluten for 30 days before retesting. Thankfully, he does not have celiac—thus far.
If you receive positive blood test results, experts recommend a visit with a gastroenterologist, who would next perform an endoscopic biopsy to determine the damage to the lining of the small intestine. This is done outpatient and quickly provides a definitive diagnosis. Need to find a doctor? Celiac.org has a healthcare provider link: https://celiac.org/celiac-disease/resources/provider-directory/
2) Celiac positive? Don’t attempt gluten-free alone!
Ask your gastroenterologist or pediatrician for resources. My son and I visited with a celiac-specialized dietician immediately following his diagnosis, which removed much of the fear and mystery of living gluten-free. Look to established celiac providers, such as the Celiac Disease Foundation, Beyond Celiac, and the University of Chicago Celiac Disease Center, just to name a few. The Gluten Intolerance Group (GIG) also sponsors a kids/teens/young adult group called “Generation GF” that might have a chapter in your area.
3) Understand the difference between being gluten-free and what I call “celiac gluten-free.”
It comes down to one thing…cross-contamination. It only takes 1/350th of a piece of bread to spur symptoms in a person with celiac. This is a time when crumbs matter. So, even using a strainer, wooden spoon, or cutting board that has ever touched gluten can contaminate your child’s gluten-free meal. Even if your child isn’t displaying symptoms after a meal, you can’t know if that exposure has triggered a damaging autoimmune response that could last for days.
So, in addition to safe kitchen practices, it’s important to know the hidden sources of gluten and whether or not packaged foods you purchase are made in facilities that process wheat. Oats in particular are something to be cautious about, as they have a high probability of cross-contamination with rye, wheat, and barley in their harvesting, storage, and processing. Certified gluten-free oats are not as safe as purchasing purity protocol oats, so you might want to do your research before considering oat products. This insightful, easy-to-read article in Gluten-Free Living magazine should demystify the great oat debate.
4) Decide if your kitchen will be partially or entirely gluten-free.
When Noah was first diagnosed, we decided that our home would be altogether gluten-free until he seemed to accept his new diet. This took longer than we thought—months, in fact—so my husband and I resorted to eating our favorite gluten-y foods on the sneak. A gluten-free diet is a healthy one, but it might not be the preferred choice for all family members. Currently, our kitchen is a shared environment; and as long as each family member follows our strict kitchen rules, we can keep it this way.
However you choose to keep your kitchen, there is a proper way to set up your gluten-free space safely. If you’re feeling overwhelmed, don’t worry! It’s much easier than it sounds. My article entitled, Setting Up Your Celiac-Safe Kitchen provides more information on this topic.
5) Quit cold turkey!
I considered throwing a “Farewell to Gluten” party with all of Noah’s favorite foods and people after his diagnosis. Our doctor advised against making the change a big ordeal. Instead, I simply explained to Noah what gluten was and told him that he had to stop eating foods containing gluten (with specific examples) so that he could feel better. After only a couple of days, Noah’s stomach pain had completely stopped—YAY!—and he seemed to understand his new lifestyle. Unfortunately, the acceptance part came much later.
6) Find ways to make gluten-free versions of your child’s favorites and have a stash of kid-friendly, gluten-free convenience foods.
Thankfully, common kid favorites, such as grilled cheese, pizza, quesadillas, chicken nuggets, and mac-n-cheese can either be bought or made gluten-free. Of course with a healing belly, it is best to make homemade meals rather than resort to processed foods. But there are times when you’re in a hurry, away from home, or not able or in the mood to cook a meal from scratch, so you’ll need to be prepared since takeout can be a risky option. Plus, it’s nice to have some non-sweet treats!
I was always grateful that Noah ate almost anything I put in front of him, but making some of his favorites, such as pad Thai, tacos, and gumbo gluten-free was a challenge at first. (I think I did a happy dance in the grocery aisle when I first discovered safe corn and pseudo-wheat tortillas–at least in my mind.)
Expect that your full transition to gluten-free living will take time—time for you to get adjusted to a new way of cooking, shopping, and mothering, and time for your child to forget what things used to taste like and to begin enjoying new and reinvented foods. Thankfully, there are so many things that a celiac CAN eat!
7) Try your best to ease your child’s gluten-free transition at school functions, kiddie parties, and gatherings.
Once your child goes gluten-free, you’ll feel like you’ve landed in the Twilight Zone. Your little darling is suddenly invited to a dozen kiddie parties, he hits another birthday, his entire school is attempting a paper mâché world record, you time warp to the Christmas season, and all of your friends decide to do as-much-gluten-as-possible cookie exchanges. That’s how life will feel, and it’s best to prepare your child emotionally for situations where they will see lots of gluten and won’t be able to touch or eat any of it.
This is a big topic to tackle, but I have two quick and somewhat easy suggestions to get you going:
- Talk with the party host or teacher and send treats that are similar to the ones being served. Of course, this won’t always be possible, but you could probably accommodate your child most of the time. Your child might feel embarrassed about having to eat differently than his peers or even ask to skip the event, but this won’t last for long. Thankfully, children are resilient and his classmates and friends will surprise you with their acceptance and support.
- Family gatherings can be a challenge. If your extended family knows about your child’s celiac, I’d suggest politely asking them not to cook for your child since it’s difficult to do so safely. Just as with school functions and peer parties, I’d suggest getting the menu from the host, running it by your child, and going from there.
Yes, Aunt Josephine might get mad when little Joey can’t eat her triple gluten cheese ravioli, and you’ll get sick of explaining what celiac is and that gluten is like cooties to your child, but that’s OK. You can use these opportunities to create awareness in others and prime your child to be his own celiac advocate at the same time. Folks will either grow to understand and accept your child’s celiac, or they’ll stay clear of the subject. It’s a victory either way!
8) Get a 504 plan created for your child at school.
The term “504 plan” originates from Section 504 of the Rehabilitation Act of 1973. This section prevents discrimination in public school students with disabilities—even “invisible” ones like celiac—in grades K-12. Parents aren’t required to create a 504 plan, but having one in place will ensure that any specified accommodations and precautions will be communicated to school staff and legally enforced. Art class, school parties, and snack and lunchtimes are all realities of daily school life that can leave your child at risk for being glutened. Don’t know where to start? The Celiac Disease Foundation has an excellent 504 Plan template to help you through this process.
9) Don’t feel guilty or embarrassed about advocating for your child.
Yes, it can be a tad embarrassing when you’re grilling a restaurant manager about prep areas and off-menu options, or kindly insisting that the nice old cafeteria lady wipes down the tables, before your child’s lunch period, but that’s OK. You are your child’s health advocate and you will know more about celiac safeguards than any teacher or restaurant employee will. These exchanges will also teach your child to be his own advocate some day soon. If he can read, teach him how to read labels and tell him what ingredients and habits make foods unsafe. Kids catch on fast.
10) Be prepared on short and long trips.
This is simple. On warm days, bring a small cooler stocked with snacks and whatever meals your child might need (if you don’t plan on dining out). Noah loves GoPicnic shelf-stable meals, so those are tasty and safe one-the-go eats. Nuts, yogurt, granola bars, carrot sticks, bananas, hummus, and cheese are other easy, healthy choices. You won’t have many options at drive-thru’s, so being over-prepared will give you the freedom and peace of mind to be out and about longer.
11) Remember to be grateful for what celiac disease is and what it isn’t.
No one asks for a life-long disease for themselves or their children, but I’d prefer celiac to most others. Let me tell you why.
Celiac is rarely lethal, and it is unique in that its one and only known treatment is to avoid gluten. That’s not the easiest thing to do, but at least it’s a natural, non-invasive remedy. Once your child is free of gluten, he will be on the path to healing. What a wonderful reality!
Like anything, celiac life is all about perspective. There is so very much a celiac can eat, and I’d suggest emphasizing that rather than what your child can’t eat. Also, this life change forces families to be more aware of food ingredients and encourages healthier eating choices. Who doesn’t want that for their family?
The Celiac Club is certainly no Club-Med, but you CAN and WILL survive your first year. Your child will feel better each day and that alone will make every food avoidance and gluten-free baking blunder totally worth your efforts and sacrifices. I hope these tips provide a compass for your family’s new gluten-free journey.
Thank you for reading, and the best of health to your child!