After nearly 10 years of wondering, we finally have a clinical diagnosis of celiac disease for our middle child, Noah. As a nursing baby, Noah, was extremely reactive to meals that I ate that were high in gluten. We would later realize that it was not just the gluten in some of these meals, but a tricky combination of gluten, dairy, eggs and soy — all foods that would ultimately prove to be a problem for him. Over the years, people would often say to me, "How did you ever figure it out?"
I have to say I had a few things going for me that really helped including the fact that I had food allergies to tree nuts since my childhood and that I was a stay-at-home mom with only one other child at the time. As a newborn, Noah would cry inconsolably for six hours straight when I ate a meal high in gluten and other allergens. He would also develop a dry skin rash that was distinct from eczema and these meals (that I was eating) also dramatically impacted his bowel movements.
The first time I asked our then pediatrician if Noah might have celiac disease, he practically laughed me out of the office stating emphatically that Noah’s chances for having celiac disease was one in 500 million!! According to the University of Chicago Celiac Disease Program the actual prevalence of celiac disease is one in 133 Americans. At six months, the pediatrician told me that I should start giving Noah baby oats mixed in with his baby rice cereal. I followed this advice and the first meal that Noah had the baby oats he also had projectile vomiting immediately after I took him out of the high chair. Missing the “new food” and vomiting connection, I chalked it off to the fact that I must have jostled him when getting him out of the high chair.
Once a day I gave him baby oats and each time he had projectile vomit. After the fourth time (four days in a row), a light bulb finally went off in my head. He had no fever, no cough, no runny nose, no rashes, and no sign of any cold whatsoever except once time over the last four days he had projectile vomit. Could it be the new food? Could it be the baby oats making him vomit? I had to admit it was hard to imagine, but clearly he was not sick, and the possibility of it being the baby oats seemed plausible. Eventually we would figure out that wheat, oats, barley and rye (the gluten connection), all dairy, eggs, peanuts and tree-nuts all bothered Noah sufficiently to produce a visible physical symptom or behavior that no one could miss.
By the time he was about 11 months old, a crust of bread the size of an adult pinky finger would cause Noah to have a stomach upset great enough that he would hold his stomach and roll around on the floor crying. Hours later we could see an impact in his bowels, and a surprise result of our gluten challenges was that Noah would not eat for about 24 hours after a gluten challenge. The standard testing for celiac disease is only good (blood testing or biopsy) if you are on a diet where you ARE eating gluten. My quest when Noah turned a year was to find out how to have a child tested when they could not eat gluten.
The program director for The University of Chicago Celiac Disease Program came to Buffalo to speak and I addressed this question with her after many phone calls to testing laboratories and other programs left me with no answer. Her answer was that if Noah was genetically tested for celiac AND had the genes they would consider him clinically conclusively diagnosed. Yea! I had the path to pursue. Who would have expected that I would end up have the same test done three times to get it done correctly?
The first time I had the celiac genetic testing for Noah done many years ago, the laboratory sent me results that I was expecting. The genes for celiac (as I had been instructed) were HLA-DQ2 and HLA-DQ8. The first test result came back with some other genes listed completely different from the HLA-DQ2 and HLA-DQ8. I had every intention of having the test re-done, but in the meantime my third child was born who had some very severe health issues related to food, of course. Thus, I got sidetracked in nailing down a diagnosis for Noah.
Our good friend, Linda Breitbach, gently reminded me over a year ago that getting Noah conclusively diagnosed or having celiac ruled out was on my to do list!! Yay for the love and support of good friends like Linda. So back on my to do list went genetic testing for Noah. I was very careful this time to explain to the pediatrician what to write on the script for the celiac testing. Not the same pediatrician who practically laughed us out of the office, but a new one that we had since shortly after our third child was born. The pediatrician carefully wrote out the celiac genetic testing in longhand so there would be no confusion.
A few weeks after the blood draw, I got the letter from the pediatrician’s office about Noah’s results. Based simply on the language of the letter from the doctor’s office I knew that they had done standard celiac testing for Noah and not the genetic testing. Standard celiac testing requires that you be eating gluten. If you are not eating gluten and you have a celiac test, it will, of course, be negative. I called the hospital laboratory where the test was done and spoke to a technician who then put on a supervisor.
Relatively quickly the hospital agreed, yes the wrong test was done. They would keep the script on file and I could bring Noah in any time for a “re-draw”. More than nine years after I first suspected celiac disease, and even after authoring a gluten-free, dairy-free, egg-free, tree-nut and peanut-free cookbook, you would think I wouldn’t be surprised. Well, I was. I think after the first incorrect genetic testing, I was thinking that Noah was just gluten intolerant. Now, knowing that he is diagnosed there is peace of mind and a sense of completeness. There is no more wondering about Noah and celiac disease. There are, however, about two million more people to get diagnosed with celiac disease, and that is my next quest!! Care to join in the fun? Watch for the innovative and creative ways we are going to use to move the current U.S. diagnosis rate, 3-5%, to a more respectable number!!
Lisa A. Lundy
Public Speaker & Author of: The Super Allergy Girl™ Allergy & Celiac Cookbook