Nicole is a Charlotte mom to 2 little girls. Her older daughter, Julia Claire, was diagnosed with Celiac Disease at the age of 3 and Nicole was kind enough to sit down with us to share her story so that other moms can learn from her experience.
Empowered Mommies (EM): Nicole, thanks so much for sitting down with us to share your personal story of Celiac Disease. We really appreciate it. Many moms would love to learn more about this condition that affects so many children today and there's no better way than learning from a mom who's been there and is now quite experienced with it. When did you first realize that your little girl was having issues with certain foods?
Nicole Nastali (NN): I'm glad to help. Julia Claire had excellent health and wellness visits for the first two years of her life, no apparent food allergies and normal physical and cognitive development. It was not until about 33 months of age that I first noticed a change in her behavior. She started to act withdrawn, moody and irritable at the dinner table and would complain that her belly felt hot. She suffered chronic diarrhea and also sometimes vomited during or after meals. She gagged very easily and took a long time to eat, sometimes over an hour. She was exhibiting avoidance behaviors whenever mealtime came around. She also had very foul smelling gray stools. When she turned three, I noticed that her leg muscles were showing signs of atrophy and were extremely thin. She also had a bloated belly most of the time. These were signs of malnourishment and I was alarmed.
EM: Were there specific symptoms that raised a red flag with you?
Nicole Nastali (NN): Without a doubt, her complaint of a "hot" stomach was one of the first signs along with her change in behavior and personality. She always seemed sad or depressed when it came time for meals. Fortunately for us, Julia Claire is highly symptomatic which means that her body reacts violently to the wrong foods for her. She would become flush after eating, develop bluish under eye circles, had quite a bit of bloating, fatigue and overall looked visibly ill. She was pale and always looked tired. I started with elimination diets and food journaling to write down the foods she was eating and her reaction to the foods. (Another symptom that our dentist showed us after she was diagnosed with celiac disease was a flaw on her tooth enamel. She had a small brown spot on one of her lower teeth.)
EM: How long did it take for her to be officially diagnosed with celiac disease? Why do you think it is misdiagnosed so often?
Nicole Nastali (NN): I guess it was about 6 months. I went through a frustrating period where she suffered with chronic diarrhea and I kept going back to my pediatrician asking them to take a closer look at Julia Claire because I knew something was just not right. On numerous occasions I was told that it must be her diet and that nothing was apparently wrong. This happened on various occasions and as you can imagine as a mother, was quite exasperating. My pediatrician told me there was nothing else she could do to help me and that I should see other doctors.
I took her to a pediatric allergist. After going through several tests which started with an initial allergy test (showing her as being highly sensitive to every food under the sun), the allergist told us that the results were inconclusive. Meaning that they had no idea. That was a very difficult thing to go home hearing. Nobody knew what was wrong and they seemed to just keep passing us around from doctor to doctor.
The next doctor was the pediatric gastroenterologist who met with us to come up with a plan. He decided to scope her belly and take pictures and small biopsies along the way of her esophagus, stomach, and intestines to see if he could find what was wrong. To the naked eye, there was nothing wrong. He came out to the waiting room to tell me that everything "looked" normal, but they would get back to me in a few weeks with the results. I had to wait longer than normal because it was right before the Thanksgiving holiday and the labs would be closed. We heard back from the doctor 2 days before Christmas with a firm diagnosis of celiac disease.
The reason that celiac disease is so hard to diagnose is that not everyone shows symptoms. We are very fortunate that Julia Claire exhibited many of the symptoms and we kept investigating until we were able to find a cause.
EM: Many moms can't tell the difference between a food allergy, sensitive and/or intolerance and something like celiac disease. Can you explain what celiac disease is and how it differs from a food allergy?
Nicole Nastali (NN): The University of Chicago has a wonderful Celiac Center: http://www.celiacdisease.net/ that has vast amounts of detailed information on celiac disease and quoting from the site, celiac disease is defined as “an inherited autoimmune disease that affects more than 3 million Americans. The disease affects the digestive process of the small intestine and is triggered by the consumption of gluten--a protein found in wheat, barley and rye. Celiac disease causes an abnormal response to gluten ingestion: the immune system attacks the small intestine, inhibiting the absorption of important nutrients, destroying the intestinal villi and wreaking havoc on the bodies systems”.
So unlike a food allergy, which is a temporary reaction to a compound with certain symptoms, celiac disease causes more in-depth tissue damage that can have long-term health impacts such as impaired cognitive development, infertility and an overall suppressed immune system. While celiac disease is not immediately life threatening like a severe food allergy, it can cause long term damage to the body if it is not treated.
EM: What treatment techniques have worked best with your little girl?
Nicole Nastali (NN): The only known remedy for this condition is eliminating gluten from the diet. So now we read every label very carefully, we make sure her teachers, peers, friends and parents of friends understand that she has celiac disease and what that means. Gluten is found in many more foods than just pasta and breads. It is "hidden" in some brands of salad dressings, yogurt, condiments, ice cream, shredded cheese, soups, and many other foods where you wouldn't expect to find it.
Celiac disease today is like peanut allergies 10 years ago in terms of research and knowledge regarding the disease. There is no cure for it right now and people are becoming more and more aware of this disease.
There is a Celiac Intolerance Group that will provide you with information and legislation that empowers you to push for gluten-free awareness in schools and daycares. Their handouts help the teachers and other parents understand what a child with celiac disease needs in a school environment to be safe.
We were also fortunate enough to work with a nutritionist that specializes in counseling children and adults who are newly diagnosed with celiac disease right here in Charlotte. Her name is Pat Fogarty and she has been focused on spreading awareness and helping families with celiac disease for over 10 years.
http://www.charlotte-celiac-connection.org/Medical.html. Pat is a Registered Dietitian and the mother of a daughter who was diagnosed with celiac disease in 1998. She is well versed in the needs of the celiac patient and the requirements of the gluten-free diet and works with local area doctors. She is available for consultations and can guide you though the myriad of things to think about like eating out, recipes, etc. Her website offers a lot of information on latest research, articles, support groups, and other resources.
There are also many wonderful organizations out there working bringing together moms of kids with celiac disease like ROCK (Raising Our Celiac Kids) which is a national celiac disease support group, www.celiac.com.
EM: What is some advice you'd like to share with our readers if they suspect their child may have celiac disease. i.e.: What should they look out for?
Nicole Nastali (NN): What’s tricky about celiac disease is that the symptoms vary with each person and they may not exhibit any symptoms at all. In some cases, symptoms are not obvious until much later in life. This can be challenging for a mom who may suspect their child has celiac disease. It is important to trust your own instincts and keep searching for answers because you might be just like me. I knew that my child’s diet was healthy and that the symptoms that she was having were not “normal”.
For me when Julia Claire was finally diagnosed, it was bittersweet. I went through a period where I kept asking why, why her? But then realized it could be worse. She is not in the ICU, has all her limbs and is otherwise a smart, healthy little girl. Then, I felt comforted in the fact that I had finally gotten closure on this after months of feeling like something was wrong and being turned away from doctors who didn't know what was wrong.
I can’t emphasize enough the importance of early detection because of the long-term effects. Children or adults that are left untreated can suffer from other issues such as:
- Failure to thrive or short stature
- Delayed puberty
- Pain in the joints
- Tingling numbness in the legs
- Pale sores inside the mouth
- A skin rash called dermatitis herpetiformis (DH)
- Tooth discoloration or loss of enamel
- Unexplained infertility, recurrent miscarriage
- Osteopenia (mild) or osteoporosis (more serious bone density problem)
- Peripheral Neuropathy
- Psychiatric disorders such as anxiety, depression
EM: Thanks again for your time. We really appreciate it. You’re a great role model not only for moms of kids with celiac disease but also for moms out there about the importance of trusting your instincts and pushing back and being persistent when it comes to the health of our babies! A true empowered mommy!!
NN: Thanks Ivanna! I'm happy I could help spread the word about celiac disease.