Our daughter had been through enough already, at least we thought that way. So when the basic blood test for allergens was done and it came back positive for wheat, peanuts and egg whites, it was a blow. An appointment was made with an allergist and we saw another day out of school for her as their appointments could only be in the mornings. Alas, it is what it is.
Adjustments have been made and I promise it wasn’t easy. Peanuts – nothing! They are such a common allergen that you can find all kinds of substitutes and you can easily see if peanuts are on the ingredient label. No problem. Greta loves Wow Butter so we are good to go. The wheat and the egg whites were more difficult. One entire line of gluten free breads doesn’t know how to make them without egg whites. Oh bother, but somehow we managed to get some foods she could eat and still feel like part of the family.
Today we saw the allergist. She asked a few questions and went over results. Greta has never had the throat constricting, projectile vomiting, hives, swelling and so forth that are typical of a dangerous allergic reaction. The allergist assured me that the test Greta had done was not a diagnostic test. It is used in conjunction with other tests and with records of whether or not the patient has had allergic reactions before. The bottom line: Greta’s diet doesn’t have to be limited anymore! I took the girl to Ryan’s for lunch and she proceeded to wolf down two dinner rolls. Ahhh, the taste of a hot buttered dinner roll.
I have been thinking about that false positive test. It was never meant to be a diagnostic test and it does have a common problem of showing up false positives. This is something we had already researched and therefore we were hoping we would get the news we got today. It made me stop and wonder: are there other tests I’m using in my life that aren’t diagnostic tests, but only to be used in conjunction with other things? Do I have narrow vision and limit myself to only one way of doing something? I shall be taking inventory the rest of this week. What needs to be contrasted with something else. What is a stand alone test. This will be an interesting week.
So our daughter decides that having a rare in children autoimmune disorder isn’t enough and has to test positive for three food allergies: wheat, egg whites and peanuts. Although some experts say there is a high incidence of false positives in these tests, we are still taking precautions and carefully preparing her food. Peanuts is the easiest one. It is a common allergen and there are already many products proudly boasting they are safe for kids with peanut allergies. Bring on the Almond butter!
The wheat is giving us the most grief. We found a load of bread that was gluten free, but it had egg whites in it. It is a huge chore! Yesterday for lunch, I made grilled cheese sandwiches and potato carrot soup. Greta noticed that her bread looked different from all the other plates of sandwiches. She started to complain and felt all alone. “I don’t like feeling that I’m all alone.” I quickly reassured her that she wasn’t alone. Everyone else in the family can eat cheese, but I can’t. I have Crohn’s Disease and a colon resection to thank for that. As soon as she was reminded that she wasn’t the only one, everything changed.
Who likes to stick out for the wrong reasons? Who likes to be the one that everyone “feels sorry for” because they are so different? But the truth is that most of us have a special need here or there. Some are just more obvious than others. One of the recent trends that I’m learning to follow is bringing awareness to those who suffer in silence. There are many illnesses, diseases, home situations, and so forth that it isn’t always evident just from the outward appearance that a struggle is even taking place.
Because it has to do with that part of the body that a lot of people don’t want to discuss, Crohn’s Disease and similar issues weren’t talked about much. But the truth is: everybody poops! I’m seeing more and more people that are talking about their issues in a productive way. This is a good thing. Why? Until I joined http://www.chronology.com, I didn’t realize there were others out there that experienced pseudo fevers like I did. I didn’t realize there were others out there who went misdiagnosed for years as I had. I found a place that showed me I wasn’t alone.
Most people want that. Even the solitary types want to know there are other solitary types out there, even if they don’t want to meet them. It’s just good to know you aren’t alone. Once parents of children with allergies started banding together, we got more options to offer these kids. When we suffer in silence, nothing gets accomplished to help make a difference. When we take the time to get to know one another and share what is really going on: we will find we are not alone and working together we can effect change. Examples? Now that we know peanuts are a common allergen, there are some elementary schools that have banned peanuts and peanut containing products. There are so many other options out there and people can eat all the peanuts they want at home. The Center for Courageous Kids holds a summer camp each year for children with severe allergies and their families. In fact, that’s all they do, hold summer and family camps for kids with different issues, including asthma, multiple sclerosis and transverse myelitis.
Kids that have been through so much see they aren’t alone. Maybe you need to see you aren’t alone as well. Do a google search and see if there is anyone else out there “like you” and see what you can learn. You just might be part of a miracle of making a difference!