Claire is the youngest of our four children and was the first born after my diagnosis with celiac disease. She was a very healthy baby and I can’t recall her having any health issues during her infancy other than one or two mild colds and a touch of constipation. Then, when she was about a 13 months old she began to have very high fevers, up to 104.5-105 F, that would come out of the blue and last between 2 and 5 days. During these fevers she would have no other signs or symptoms of infection (i.e. rashes, vomiting, cough), she looked good, and, for the most part, her blood and other lab tests were normal. She had 9 or 10 total episodes of fever without a source during her 2nd year of life. Celiac disease was always in the back of my mind but I could not link her fevers with eating gluten. Although our home is 100% gluten-free, my kids do eat gluten outside of the home, in part so that I can keep tabs on whether or not they develop symptoms after eating it.
Claire’s fevers stopped in December, only to be replaced by episodes of diarrhea. Her poop was tested for bacteria, parasites, white blood cells, and all kinds of other good stuff. I opted out of blood screening labs for celiac disease at this point as 1.) The celiac antibody panels are not often reliable in her age group, especially in kids who are “gluten-light” at baseline like Claire was, 2.) I couldn’t bear the thought of making her go through any more blood draws after all the times she’d had to be poked for her fevers, and 3.) I did not want her to have to go through a gluten challenge to get a reliable small bowel biopsy via endoscopy (since she was eating such small amounts of gluten at baseline). Our gut instinct was that her system was reacting to something in her diet. So, we put her on a gluten-free and milk-free diet in January, started her on a high-potency probiotic, and, her poops become normal and the fevers did not return.
Our oldest daughter had a milk protein allergy during infancy, so I prayed that Claire’s symptoms were from a milk protein intolerance of some sort, as most kids outgrow this. However, when we re-introduced milk, none of Claire’s symptoms returned. But when she accidentally ate gluten the diarrhea and abdominal bloating returned on 2 separate occasions. And then, when we let her eat a non-GF chicken nugget in April on purpose, both the diarrhea and fever returned with a vengeance.
Although I wanted to be able to keep Claire gluten-free forever, I knew that it was time for her to be formally evaluated for celiac disease. As a doctor, I feel very uncomfortable trying to diagnose my own kids with anything. It seemed that she was sensitive to gluten, but in order to diagnose a child with non-celiac gluten sensitivity, I knew that celiac disease needs to be ruled out.
We met with a pediatric gastroenterologist named Dr. N who is affiliated with a very well-respected tertiary children’s hospital. Dr. N was phenomenal and very knowledgeable about celiac disease. He assured me that he would take enough duodenal biopsy samples (at least 5) and that he would include the duodenal bulb (in some cases, this is the only part of the small intestine where the damage from celiac can be found). He agreed that even if Claire’s small bowel biopsy showed only Marsh 1 damage (mildest findings seen in celiac disease) that he would give her a celiac diagnosis based on her symptoms and family history. We began to give Claire foods with gluten to eat, and for weeks she enjoyed non-GF pizza, Oreos, ice cream with cereal bits on top, and all kinds of other treats that she does not normally eat. Interestingly enough, she did not develop diarrhea but instead became mega-constipated. She did not develop a fever. I almost cancelled the biopsy at this point but decided to go through with it as Dr. N. said that he’d seen this happen with previous gluten challenges in kids who ended up having celiac disease.
Claire could only have clear liquids on the morning of the scope, so all four of our kiddos drank white grape juice and ate yellow jello and popsicles for breakfast. I let her watch Frozen during the 2 hour drive to the hospital. Claire was in great hands with the nurses, anesthesiologist, and other staff who we met at the children’s hospital on the morning of her endoscopy. She was given a medication called Versed which made her sleepy and 20 minutes later they wheeled her away to the O.R. The entire procedure took 15 to 20 minutes and we were reunited about half an hour later when she woke up. She was a bit cranky at this point, much like she would have been if we woke her from a deep sleep at home, but soon after she was drinking juice and eating peanut butter out of little individual cups with a spoon. She then ate a huge bowl of GF mac and cheese followed by about 8 cookies. Two hours later she was running around outside in the sunshine, sharing a GF pizza from California Pizza Kitchen with me, and as happy as could be, and since then she seems to have total amnesia for the entire experience. Thankfully.
We received results 4 days later that her duodenal biopsies were normal and did not show celiac disease. Since the biopsy results came back she has eaten gluten several times without getting ill or having digestive symptoms. I am glad that we went through with the testing. I’m not sure that this will last forever (just because she doesn’t have celiac disease now doesn’t mean that she won’t develop it in the future) and I have no idea why she was having the diarrhea or fevers, but for now I am grateful.
Out of curiosity, has anyone else had a toddler who seemed to have reactions to gluten that disappeared?