Last week as I was furiously trying to run last minute Thanksgiving preparation errands I stopped by the post office and was surprized to find that I had two packages to pick up. The first was from Jen at Not Calm (dot com) which is the most clever blog name I have ever seen. Jen and I had an international exchange - Lemony Snicket, gluten-free flour and brownie mix for Japanese stationary. Thanks Jen.
Our other package was this book. Danna Korn is a mother with a child who has Celiac disease and has written a few books about how to deal with it all. This information has been so helpful and soothing. It is always nice to know you are not alone in your struggles.
Lily has not been diagnosed as having Celiac disease. In fact she has taken several blood tests and all have come back negative. Negative blood tests are encouraging but not a diffinative, she does not have Celiac Disease, and not a she will never have Celiac disease. Currently she is labeled as being Gluten intolerant. It is so complex with all the labels and tests, but the long and short of it is Lily cannot eat gluten, which is science speak for wheat. She also has the same reaction to corn, oat, egg, apple and tomato so she can't eat those either. It may be a life long sentence and it may be until she is a bit bigger.
I was able to make Thanksgiving almost completely what we refer to as Lily friendly. We had some corn on the cob and some rolls but other than that we were good. Amazingly enough Butterball Turkeys have corn starch in them, what is up with that! They somehow shoot the turkey full of corn starch. I am so amazed, I thought meat was safe, turkey isn't processed meat it is still on the bones, so frustrating. I also discovered that her toothpaste is not Lily friendly. Toothpaste, what a pain. Plus, she has a cold and there is not medicine on our base that is Lily friendly.
I have been a bit frustrated by this over the last year that we have been trying to manage her food issues. Reading this book and the blog Gluten Free Girl have been a real help with my attitude problem. It is possible that if we didn't discover her intolerances at such an early age (9 months) that she could have developed a whole host of serious problems. Now she has no real problem just that she has to have a special diet. A diet with no junk food, no processed food, only health lovingly prepared food. Intelectually speaking that isn't such a bad thing, having to eat healthy, not being able to tolerate junk. We should all be so lucky. But, in my heart I feel like she is missing out.
I guess through this process of dealing with Lily's food issues I have discovered that I have some crazy food issues myself. It is nice to read in the book that I am not alone. It is not crazy to want to take part in the rituals I grew up with. Traditions like eating birthday cake, dessert, and crackers. It is hard to give up those things. I am having to wrap my mind around the fact that those traditions are harmful to Lily and giving them up is not taking away something but giving her something, the gift of good food. I associate tasty food with more than just the pleasure of eating it, I associate being deprived of that food with more than just not having a bit a pleasure that only lasts a moment on the lips. The whole food issue is amazingly complex. So I am trying to look at this whole experience as a gift to both Lily (to grow up eating well) and myself (to see food as simply food and not as a metaphor for being left out).
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3 comments:
We found out my youngest son, at that time was five months and is now 17 months, is allergic to everything. We've had him tested for over 250 foods and its all been positive, so we're experimenting and helping him the best way we can.
In an effort to help him, both my husband and I got allergy testing two months ago. Surprise -- I'm allergic to wheat and we are treating it as celiac.
From all the research we've done, celiac is extremely difficult to completely diagose. And blood tests are pretty worthless. The only way to get a better idea is to go through the two year process of stomach scoping, and even then it could come up negative but still really be positive.
I know we are having a hard time feeding my son and myself (especially with Thanksgiving and my in-laws who came to town, who think food allergies are a bunch of hullabullub).
Medical science isn't an exact art. Do what's best for you and Lily. Best wishes.
Wow we have so much in common with the food problems and the testing. Our doctor sent us to an allergy specialist who did skin tests on Lily, about a year ago. They determined that she is not, what the doctors call allergic, because that is a certain type of reaction (Ig) and according to all the blood tests and the scratch test she doesn't have that type of reaction.
So our doctor tested for Celiac through the blood and it was negative. They say that result could be because I hadn't fed her any wheat in many months before the test or it could be that she doesn't have Celiac. Even if she doesn't have Celiac she could some day develope it with continued exposure to wheat. Or she may never develope it.
Bottom line is that the doctors say don't feed her food that she has an adverse reaction to. The doctors want to know why the adverse reaction, and haven't found out why, but the solution remains don't feed it to her. So that is where we are.
Not feeding her the six foods that she reacts badly to: wheat, corn, oat, egg, apple and tomato is very difficult. I swear 99.9% of the food in the grocery store has at least one of those ingredients. Ya know.
So I stick to fresh or frozen fruits and veggies,fresh cut meat, milk, beans, rice, and that is about it.
I look up recipes for all the different types of veggies I have never heard of before. I try to make it an adventure and to make sure she gets a variety.
Good luck. We need to keep in touch and share what we learn.
I totally agree -- we need to stay in touch.
I can't believe your doctor did a skin test on a two year old; they aren't considered remotely accurate until over the age of five.
Also, the blood IeG is worthless. The only way to truely know is to do the stomach scope with a biopsy, go gluten-free for months, do another stomach scope with biopsy, go on gluten-ful foods for months and do another stomach scope with biopsy. And even then its not conclusive.
I ran into a really nice lady at Whole Foods last week (wish I gave her my phone number). She has been GF for 20 years because both of her sons have celiac. But only one has had a positive diagnosis (per above arrangement) and the other one has not -- even though he gets deathly ill anytime he has something with gluten.
It has to be really difficult not to have corn in addition to celiac; at least Darwin and I can have corn pasta (I really don't like the rice pastas, but I'm gonna have to try them again if I want lasagna), tortillas and chips.
Darwin is allergic to wheat, oat, barley, corn, dairy, soy, eggs and cats on a level 6; and its quite difficult. He's on an awfully expensive formula called Neocate, which is wonderful in the aspect its kept him *alive*, but dreadful in the aspect of how much debt we've accululated for it (over $1,000 US/month) in the past 16 months. We are trying more and more foods on him, so hopefully we can ease back on the amount of formula he's getting.
At least Lily has a really good mom that cares; its a difficult job, but you're doing great!
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