Have you ever had one of those situations where you try to explain something as best as you can and people still just don’t get it? I have been having this situation when it comes to Felicity’s need to be Gluten-Free. Some people understand that Celiac Disease means that Felicity cannot eat anything containing Gluten; this is absolutely correct. However, there is so much more to it than that! For example: If I want a piece of toast at home that is made from bread containing Gluten, I must either toast it in the oven or on the stove OR I can use the toaster, but then have to thoroughly clean the toaster so that Felicity can use it. If we are having hamburgers and I lay a bun with Gluten in it on the counter and then lay Felicity’s Gluten-Free (GF) bun where the other one was laying…it is now contaminated and she can no longer eat her GF bun. Sounds tricky, I know, but once you get the hang of it…there really isn’t anything tricky about it! Well, I take that back…getting people to understand the concept of “cross-contamination” is nearly impossible. I have a few friends who have latched on to the GF idea and anytime they bring us food or anything I know that the mom has taken great care to be sure Felicity is safe!
Felicity is attending a camp this week and we are so excited; I hate that it is not a Christian camp, but there are no Christian camps in Oklahoma (that I have found) that offer GF selections. Felicity is able to go to this particular camp because their first week of camp is GF Week! This camp works with the Celiac Disease Foundation to make sure all food and snacks are GF and have no cross-contamination! She is so excited because without this option, Felicity couldn’t go to camp this summer! Later this summer, our church is taking kids to a 3 day camp in Southern Oklahoma and Felicity would love to attend with her friends. Everyone is encouraging us to send her, but are not understanding how difficult this is. I know I can pack her food and package it carefully and put it in a cooler; when she gets to camp though, that food will need to be refrigerated. Now, suppose the kitchen staff tries to be helpful and put Felicity’s food on her plate and then add other things to her plate, things that contain Gluten or the pre-packaged food comes into contact with something containing Gluten like someone's glove; Felicity then can no longer eat any of the food on her plate because it has been contaminated. THIS is my dilemma. I would love to send Felicity to camp with all of her friends, but struggle because we feel like most of the people going to this camp with her do not understand the severity of our food dilemma!
I do not, for one second, believe that people would intentionally harm my daughter. I also believe that people are not stupid about this…they are merely uneducated. The purpose of this blog is not to condemn people for their lack of knowledge about the situation, but rather to educate people.
EDUCATION: There are over 3 million people in the United States with Celiac Disease. With Celiac Disease a person cannot consume ANYTHING containing Gluten. This means that it cannot be made with Gluten, cannot be processed where they process items with Gluten, it cannot come in contact with anything that contains Gluten and cannot be prepared with things containing Gluten. In our home, this means that when I cook something that contains Gluten (which is rare), I have to sterilize and clean ALL surfaces that the Gluten containing item touched BEFORE I can place any of the Gluten-Free food on the same surface. I have been told that you can liken Celiac Disease to a peanut allergy except there is no anaphylactic shock involved requiring a shot. The ramifications of consuming Gluten for a Celiac patient is more of a long term type effect for some and for others they can feel sick immediately. In a person with Celiac, as they consume Gluten it damages their intestines. In Felicity’s case, it damaged hers until she became malnourished and was becoming more and more ill daily.
So, yes…she could go places and take her own food, but if she doesn’t know exactly how it was handled she cannot eat it because it could be contaminated. No, this is not a parent being paranoid at all. This is all coming from a parent who nearly lost her daughter once and then was losing her to malnourishment because this disease went undiagnosed. Am I over-reacting? Possibly, but I am not willing for one second to take a chance with my child’s health. Would you be willing to take that risk with your own child? I would venture to say that no parent out there would risk their child’s health just so that they can go somewhere they think their child should go. Will Felicity go to camp with her church friends? We haven’t decided yet, but know that we are tired of feeling pressured by lots of people around us to send her because, after all, we can just pack her some food. Our goal is to educate people about Celiac Disease and help people to realize that packing some food is not all there is to this illness…it spans so much further than that for us and millions, yes millions, of families in the United States who have a loved one with Celiac Disease.
You may feel free to share this education with people! Feel free to also get more information from the Celiac Disease Foundation online at www.celiacdiseasefoundation.org. I am also more than willing to answer any questions or concerns that you may have about this disease. There is no cure for Celiac Disease, but there are things that we can do to help those with this disease…we have to start with educating ourselves and others!
No comments:
Post a Comment