Teresa and Melanie's Story
Teresa and Melanie are not your typical 12-year-old girls.
They may seem typical because between the two of them they get straight A's, play with friends, like to shop, and feed the cats. Teresa also studies several types of dance and was asked to join a dance company. Melanie plays sports all year round and just won a golf tournament! However, they also manage five autoimmune disorders on a daily basis.
Our family’s story begins with Teresa’s diagnosis of Type 1 Diabetes almost eight years ago. January 14th 1998 was a life-altering day. We took Teresa to the doctor because she was experiencing some symptoms that made us think she had a urinary track infection. When the pediatrician insisted we immediately rush her to Children’s Hospital because she had “Type 1 or Juvenile Diabetes”, we were shocked and confused. Well, after several days in the hospital, and now several years of learning everything we can to keep Teresa healthy, we still are overwhelmed. Diabetes is relentless in the 24/7 care that is required to basically keep Teresa alive. Blood Glucose tests and insulin are Teresa’s “life support”. We work hard to raise money and even attended a Senate Hearing to convince Congress to find a CURE.
A few years after the diabetes diagnosis, through annual bloodwork, Teresa was found to have Hashimoto’s Thyroiditis. Like diabetes, it is another autoimmune disease. The thyroid gland does not produce enough hormone and that affects growth, development and energy levels. About 1 in 4 kids with Type 1 diabetes also have hypothyroidism.
Then in 2003, again through annual bloodwork, Teresa tested positive for Celiac Disease. An endoscopy and biopsies of her small intestine confirmed the results. This diagnosis was also shocking because Teresa was completely asymptomatic. Celiac Disease is Teresa’s third autoimmune disease. In Celiac Disease, the villi of the small intestine are damaged when the proteins found in the gluten of wheat, barley and rye, are ingested. It is believed as many as 1 in 10 people with Type 1 diabetes also have Celiac Disease. Thanks to Teresa’s doctors being aware of the connection between the two diseases, Teresa was spared some of the more difficult symptoms and health issues of Celiac Disease.
Teresa’s new diagnosis was a huge emotional setback for her. We had to immediately remove foods from her diet that contain gluten including pizza, pretzels, pasta, cakes, and cookies. It has been a difficult challenge. Difficult for us because buying or making gluten-free versions of the above foods is not easy. But what’s been more difficult for Teresa has been the feeling of not being a “normal” kid. After years of getting used to the adjustments in school, at parties or at home due to the diabetes, she had to start all over again with Celiac Disease. No longer could she enjoy the school pizza parties, birthday cake at her friends’ parties or order anything she wants off the menu. There have been many tears in our house over the last two years.
But our family’s story doesn’t end there. Because celiac runs very strongly in families, Teresa’s doctor urged the rest of the family to be immediately tested for Celiac Disease. Teresa’s twin sister, our daughter Melanie, was found to have Celiac Disease. The strange irony is that Melanie had been suffering from severe stomach pains for probably 5 or 6 years….more than half her life. We took her to the doctor many times and were repeatedly brushed off and told things like “it’s probably just a “virus” or “kids get tummyaches” or “why don’t you try lactaid milk”. Her body weight at her first visit with a GI was less than 5th percentile for her age. She was having diarrhea and was frequently doubled over in pain. We knew in our hearts something was wrong. We never felt we were taken seriously and we can’t help but think that Melanie needlessly suffered….seriously suffered…. because of the ignorance of several doctors about Celiac Disease. Like Teresa, Melanie has since tested positive for Hashimoto’s Thyroiditis. Melanie has also been dealing with the same emotional setbacks that affect Teresa. Who would have thought seeing a Philadelphia Soft Pretzel could bring a girl to tears! Knowing that you can never have another one is hard to take. Our son Michael refuses to eat gluten in front of them because he doesn’t want to make them sad. As one can imagine, it is a daily concern of ours that Melanie may one day be diagnosed with diabetes or that Michael be diagnosed with celiac or diabetes.
Luckily, our girls have each other to lean on in those tough emotional times. We feel completely helpless as their parents that we can’t make it all go away. They are feeling great physically now and actually are doing better emotionally, also. I recently asked Teresa which of the three diseases she would most want to get rid of and without hesitation, she said Celiac Disease! There are still so many foods she misses! We are extremely proud of them and how they have handled these challenges. We do our best to balance disease management with a fun and happy lifestyle. After all, a kid should be able to feel like a normal kid!
Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.