As many of you know, and some of you might not, we have been trying to find out if Aiden has Celiac disease. He has been having symptoms since this fall. It has not been a fun time, and we've been trying to figure out what could be the cause for all the problems. We took him off gluten in January for three weeks, and his symptoms basically went away. We put him back on gluten, and they seemed to return. The hard part was getting him to consume gluten again, though. He didn't seem to want much of the foods that had it, and it was more of a challenge than we expected. We got a referral to a pediatric gastroenterologist at Duke Children's Hospital and saw him last week. We were surprised he decided to go on with testing, as Aiden hadn't been back on gluten for long. If you aren't familiar with what we've been going through, here's some info on the blog that we posted recently: http://daisyryanadkins.blogspot.com/2010/02/overwhelmed.html and http://daisyryanadkins.blogspot.com/2010/02/testing-testing.html
I know many of you have been wondering about Aiden's test results. We finally got the results from the last one on Friday. The tests all came back negative for Celiac. You might think we would be breathing a sigh of relief, but that's not what we're doing because it means our search is not over. The dr says he is fairly confident that we did not test too soon. I'm a bit skeptical but trying not to question too much. Aiden had only been on gluten for 12 days, and we had a really hard time getting him to consume it after being off of it. It only takes a little bit to count, but some days it was very little. And now (after the fact), everything we're reading says you shouldn't go gluten-free before testing b/c it can skew results... Anyway, we talked some with the dr about what this means. Even if he does not have full blown Celiac, he could still have a gluten sensitivity or even a wheat allergy. For those not familiar with Celiac, it is not an allergy; it is an autoimmune disease. Celiac, gluten sensitivity, and a wheat allergy are all quite different from each other. We definitely think SOMETHING is going on in relation to gluten because there is a very obvious difference in his symptoms when he is eating gluten and when he is not. Anytime he eats a decent amount of gluten, the day or two that follows will include the symptoms returning. So, after consulting with the Ped GI, we are going to go back to a gluten-free diet for a number of MONTHS. This will ensure it is completely out of his system for a good while. After so many months, probably six, we will begin introducing gluten again. If the symptoms return, that could mean he has a gluten sensitivity. We might end up testing for celiac again...just to be sure...but only if the symtpoms return and after he has been back on gluten for a number of months again. We can test for a wheat allergy if we want, but that involves going to the allergist again. We already have a follow-up visit scheduled in the fall, so we'll wait until then. We're already keeping Aiden off of some other common allergens and are waiting to test for those, but the dr might wait another year just because of Aiden's young age. Those tests can be false easily, especially with really young children. So, we'll wait to see what that dr says. I think we're more convinced this is a gluten issue and not a wheat allergy, though.
During Aiden's time off of gluten, the entire family will actually be going gluten free. I have a gluten sensitivity myself. And this is actually very common, more than you might think. Also, if Aiden DID somehow have Celiac, it often runs in the family. So, there are many reasons to have the whole family on this diet. For one thing, it just makes it easier! We won't have to make special things just for Aiden, and we won't have to worry about him accidentally getting something he shouldn't because EVERYTHING will be gluten free. Plus, this gives us a chance to see if anybody else happens to feel better on this diet. Symptoms can be very varried, or you may not even notice them - or may attribute them to something else, which is common. So, since we are doing this with him, it doesn't hurt for the rest of us to join in. (Ryan's just realized this means no cereal bars, which he usually eats at work, and Camden is not happy this means no Cream of Wheat...so we'll have to find some good substitutes and work on learning which flours, etc, we can use when cooking... And time to start scrutinizing food labels! You would be surprised at how many things contain gluten.)
This also means that when we travel, if we get to do so during this time, we'll have to really watch what we're eating when eating out or visiting others. This will be the biggest challenge but not impossible. :) And no worries about this being unhealthy. A gluten-free diet is perfectly healthy. We will make sure we get all the nutrients we need. A diet with gluten is not necessary in the least and will certainly not hurt anyone. Hopefully, though, we can figure out what is going on sooner rather than later. This will take longer than we would like, but it's definitely worth it. And we definitely all agree that there is some correlation between these foods and Aiden's symptoms.
Thanks to all of you that have been so supportive as we've been wading through all of this. It's been frustrating and exhausting at times; we feel like it's consumed us as it seems like just about all we think about is his food intake and symptoms, keeping track of every little thing and analizying all of it. And it's just been no fun for Aiden (or us) when his symptoms do appear. We had been hoping for a clear answer, but it seems like we won't quite have that for a while. Either way, hopefully we're on the way to finding out what is going on. We do appreciate all the support, the concerns, the prayers, everything.