I am choosing to write this post now, as many people have asked over the last two years, how our then 4 year old, was suddenly given this diagnosis. It has not been an easy journey for us. But I am finally feeling like I am ready to tell the entire story. It is definitely not the typical picture of someone with Celiac Disease. (You might want to get some popcorn. This will be pretty lengthy.)
Let's start in April of 2012. Our 4 year old daughter was extremely healthy. She has always been small (her genetics won't allow her to be otherwise!), but she was gaining weight/height normally. On April 6, we took her in to her pediatrician for cough and fever. She weighed 34 lbs (26%) at that time. She was diagnosed with Strep throat and given an antibiotic. Within a couple of days, she was no longer running fever or coughing. But about 10 days later, she began developing a rash on her knees. The rash was MISERABLY itchy. These were the pictures that I took
- Malnutrition. The damage to your small intestine means it can't absorb enough nutrients. Malnutrition can lead to anemia and weight loss. In children, malnutrition can cause stunted growth and delayed development.
- Loss of calcium and bone density. Malabsorption of calcium and vitamin D may lead to a softening of the bone (osteomalacia or rickets) in children and a loss of bone density (osteoporosis) in adults.
- Infertility and miscarriage. Malabsorption of calcium and vitamin D can contribute to reproductive issues.
- Lactose intolerance. Damage to your small intestine may cause you to experience abdominal pain and diarrhea after eating lactose-containing dairy products, even though they don't contain gluten. Once your intestine has healed, you may be able to tolerate dairy products again. However, some people continue to experience lactose intolerance despite successful management of celiac disease.
- Cancer. People with celiac disease who don't maintain a gluten-free diet have a greater risk of developing several forms of cancer, including intestinal lymphoma and small bowel cancer.
She gave us a couple of other possible diagnoses that were less similar in characteristic, but much more consistent with her age. These were the things that we decided to hang our hats on, as ALL of the other possibilities resolved with age. And so we prayed and prayed. And waited for the call. And a week later, we received the results:
She is right back on track with where she used to be for both her height and weight. And last week, she followed up with her GI specialist who confirmed how well she was doing (40.5 lbs, 14%) and added that he did not need to see us back unless we thought we needed him! Yay!
Where do we go from here?? It is my hope, that one day we find out some answers (just for my own medical curiosity) as to the timing that her disease became active. After looking at this graph, it is clear to me when it happened. And I don't think that the timing is a coincidence. I have been doing a little research, and have found a couple of theories that are being hypothesized, and are being studied currently. Both theories require two factors. 1. That the individual carries the gene for Celiac. 2. That gluten is contained in the diet (Gluten is pretty much ubiquitous in the American diet). The first, and most likely theory is this: That in a genetically predisposed individual, a catalyst of some sort is required to cause this disease to become active. Things such as infection (remember this all started with a cough/fever), surgery, or pregnancy. The second theory out there is that there is possibly a link with the use of antibiotics (which she also took following that initial appt in April). That study suggests that antibiotics play a role in the onset of celiac disease by changing the intestinal mucosa and activating the disease. In fact, they have found that those with recent use of antibiotics were 1.4 x more likely to develop disease. Either way, I am convinced that this all started following that initial infection, and am interested to see where these studies go in the future!
I'm also extremely excited to see where future developments take us regarding medications to treat Celiac patients, which would allow them to safely consume gluten. Right now, there are four companies that are in clinical trials, and hoping that their drug is approved first. All 4 drugs being trialed, take a different treatment approach: One is an enzyme designed to break down the gluten protein, the second is a vaccine to help desensitize you to gluten, the third is a medication to help prevent "leaky gut", and the fourth binds to the gluten molecule in an effort to escort it safely from the body. Definitely some very viable options for the future!!
So, that is our crazy story! If you have any questions, please ask!
Thanks for reading!