My 5 year old daughter Reagan was diagnosed with celiac disease in February 2011. We had been searching for the cause of her failure to thrive, microcephaly, and malnutrition for almost 3 years.
When Reagan was 5 months old, she was diagnosed with dysphasia and we had to thicken all her liquids. One year later, in April 2008, Reagan stopped eating and drinking. She refused everything for 5 days. At a routine pulmonologist appointment on that 5th day, we learned that Reagan had dropped off her growth curve to the 2nd percentile and that her head had stopped growing and she was way below the curve. They showed us in the office how to put a feeding tube down Reagan's nose and sent us home on a waiting list to be admitted to the children's hospital. The following day, Reagan was admitted and she spent 6 days in the hospital. No diagnosis was found at that time, and we were sent home with her eating and drinking a minimal amount and on full tube feeds. Two months later, I weaned her off the feedings and she was eating and drinking somewhat normally.
Fast forward to January 2009. Reagan was 2 and went on another feeding strike. After 2 days, I put a feeding tube down her nose and gave her a 500cc feeding overnight. She woke up in the morning and vomited up almost the entire feed. I called her GI clinic and they told me to take her to the ER and that they were admitting her. This time she spent 9 days in the hospital. She had numerous tests done and was under anesthesia three times. The blood tests for celiac disease were negative, but I was told that the biopsy looked suspicious for celiac. Despite that, they said they weren't going to diagnose it at that time.
While in the hospital, Reagan had a g-tube (a permanent feeding tube) placed in her stomach. We went home with a new formula called Elecare that is amino acid based and used for allergies and eosinophilic esophagitis. Reagan gained weight better on this than she ever had. We continued on wondering what was wrong. The nurse practitioner at the GI clinic would always start her on different medications, but none ever worked. She would also tell me to take her to an allergist, but the GI doc disagreed. I listened to the doctor.
Reagan's bowel movements have always been bulky, foul, frequent and loose. In October 2010, her bowel movements got worse. I decided that we had checked everything else and it was time to see an allergist. They continued to get worse and I called the GI. They ordered a stool culture and we found out that Reagan had salmonella. I took her to see the allergist anyway, and after prick tests and patch tests, we learned that she is allergic to egg, soy, garlic and onion. Funny, she looked like she was reacting badly to wheat on the 48 hour check on the patch test, but was negative at 72 hours.
The allergist wanted her to have another endoscopy and sigmoidoscopy done; he was sure she had celiac. Her GI doctor agreed that we should rescope her and repeat the blood tests. Again, the blood tests were negative but the biopsy was clearly positive. She started going gluten-free in February. It hasn't been easy, and I'm having a hard time getting my ex-husband to be diligent. Reagan is learning what she can and can't eat and when I tell her she can't have something she asks me what's in it. If I tell her it will hurt her tummy she understands. She even tells me what will hurt her.
Reagan has been eating great on the gluten-free diet, and I have not given her a tube feeding in 2 months. She has maintained her weight at 33 lbs. I wonder if she hadn't contracted salmonella, would she have been diagnosed? It was a blessing in disguise for sure!
I have suffered my whole life with constipation and have had migraines since I was 7. I've also had unexplained abdominal pain for most of my adult life and I have fibromyalgia. On the days that I don't consume any gluten, I feel so much better. I am on my way to getting myself diagnosed.
[Note: It is important to maintain a normal gluten-containing diet prior to getting tested for celiac disease. Eliminating gluten before the test could affect the accuracy of test results.]