Ten years ago this month I was diagnosed with celiac disease. I’ve already written out my celiac story, so I won’t go over it again. It doesn’t look like we’ll be having a party as my son suggested in the post A Reason to Celebrate, but we’re continuing to enjoy good food.
Interestingly, it is that son who is now also eating gluten free. He has given me permission to share some of his story. Let’s just call him J. He’s my oldest and is now 19 years old. Over the summer he worked long hard hours for a tree company. It was one of our hottest summers ever and he drank lots of Gatorade and water. When he mentioned one day that he had a slight change in bowel habits, but no other symptoms I attributed it to the sugar in the Gatorade. A couple of months later he casually mentioned that he thought he should be tested for celiac. Work had been over for a while and he was still going to the bathroom more than usual. He also noticed that he was more tired than usual. Later he asked me what to do for mouth sores. I told him that canker sores can be symptom of celiac and that I had them before I went gluten-free.
I’m going to skip a lot of details that I might give if it was my own story. The good thing was that we had testing, including an endoscopy done very quickly. Both blood work and biopsies were negative. The doctor said his villi looked great. The confusing thing is that his symptoms vary. Sometimes he seems to have a strong reaction such as diarrhea or a mental reaction (you can read about how I react to gluten mentally here). Other times, he seems to be fine. After all the tests came back negative and the doctor recommended a gluten challenge, J hesitantly ate some gluten. He didn’t react, so he ate some more. He went a week eating normally with no strong reaction, but his canker sores started coming back and he was noticably irritable. After that he decided he should probably eat gluten free.
I don’t think he’s completely convinced the problem is gluten because he still has fatigue. It may be that he needs to be gluten free longer and be more careful, or it could be that something else is also affecting him. I find his symptoms and reactions to be too much like my own to think that it’s not gluten. For now he is eating gluten-free, though. He respects my opinion on the matter, but he’s not a child who I can tell what to do.
Before we had the results of the tests, I actually wanted them to come back positive. It seemed obvious that the problem was gluten and I wanted J to know for sure that he had to eat gluten free. Now I have mixed feelings. I’m glad he does not have celiac disease, and I feel pretty confident that this is a case of gluten intolerance rather than celiac. However, I hope that he will not give up on the diet. He commutes to college and plans to do so in the future, but at some point he will move out and not have mom to cook for him. I would hate for him to live with symptoms unnecessarily, and eating gluten-free will make it much less likely that he will develop celiac disease. However, any accidental ingestion could trigger it.
Having another gluten-free eater in the house changes things a little. Anything I cook or bake is always gluten free and the whole family eats it. That doesn’t mean that everyone always eats gluten free, though. I do purchase bread, cereal, and crackers for the gluten eating members. Thankfully, J is not a picky eater and is pretty happy as long as he has food of some sort to fill him up. He can do a little cooking and fends for himself pretty well. I had to clean out cabinet space to make room for more gluten free items. Being young and on the go a lot, I try to have some quick and easy food on hand for him. I have made and frozen some food, but I hope to do more of that soon.
That’s the gluten-free news at our house. It’s been 10 years for me and about a month for my son. How long have you been gluten free?