Before I start, I'd like to say that for more background on the situation, see Gina's last two posts: Puke-O-Rama! and Three Days and Counting.
A couple of tests are still pending, but it looks overwhelming like Natalie has celiac disease (pronounced sē′ lē ak′).
Never heard of it before? Me either. Though, I have read that up to 1% of the U.S. population has it (3 million) and that approximately 97% of those cases are undiagnosed.
What does this mean? Nattie has a gluten intolerance (which is found in all wheats, ryes, barleys and usually oats).
Her doctor has asked us to start her on a gluten free diet immediately.
After looking into things, I'd compare having a gluten intolerance to having a peanut allergy (but thankfully without the epi pen or 911 on speed dial). The attention to detail and investment in time to read labels and understand the background of companies making the products is critical.
Is celiac life altering? Absolutely. Is it life threatening? Not likely.
The main organ at risk is the small intestine. Over time, considerable damage can be done to it if the proper changes aren't made. The good news is that the small intestine does heal completely if a gluten free lifestyle is attained (and then continued).
The list of foods that she is no longer allowed the have is quite extensive. Around 75%+ of the food in our house is unavailable to her. Here's the list of ingredients she needs to avoid, etc.
Which of these items do you think contains (or may contain) gluten:
*most milks, aged cheeses, seafood, poultry, peanut butter, eggs, fruits, vegetables, butter, jello, tea, wines, black coffee, ketchup, salt, pepper, cinnamon, etc.
*yogurt, chocolate milk, hot dog, bologna, hamburger, salad dressings, mayonnaise, baked beans, pickles, chocolate, chewing gum, tomato sauce, maple syrup, flavored coffee, canned soups, any type of medicine, etc.
*beer, meatloaf, pizza, ravioli, bread, buns, most cereals, licorice, pasta, waffles/pancakes, mac 'n cheese, speghetti o's, pretzels, gravy, ice cream cones, etc.
The answer is that the first list does not contain gluten, the second may contain gluten (see label reading statement above) and the last list definitely contains gluten.
After doing some research, a gluten free diet is spendy but is much easier to deal with today then it was even a couple of years ago. Not only are there places like Trader Joe's which make gluten free food reasonably priced (though terribly inaccessible to a south metro resident), but it's even being put on labels of food now (though not FDA approved yet). We will be buying a breadmaker and will be making much of the food we eat from scratch. I am looking into what books we will be adding to our library as well. I've already decided that Shelley Case's Gluten Free Diet: A Comprehensive Resource Guide will be for sure.
Another interesting factor in this all is that either Gina or I passed the gene to her and it's possible Macie has the same condition.
Let's see, Gina has a good stomach and I definitely don't. Neither does my dad. His dad, bad stomach too. Who do you think is carrying the gene? Gina's family has some of the traits associated to this disease but they're not resigned specially to one side of her family making me think that it's not her.
Based on the list of symptoms, I'm fully expecting to be diagnosed with it as well and will need to follow the same guidelines as Nattie does.
If this holds true, I can't tell you how much it will break me heart to look at Nattie and know that I caused this.
Once we confirm who the carrier is we will need to go back through their family tree and suggest that those who may be at risk be tested.
We will also be seeing a nutritionist in early February to help us make the conversion as smooth as possible.
While all this is very unfortunate, it could be a lot worse. The first couple of months are going to be quite an adjustment but after that it will just be a way of life.
And...
I am glad that we potentially have answers to many of Nattie's recent issues.
i posted a similar comment on gina's blog, but you're getting one too. :)both my aunt and my cousin have celiac's.yes, the change in lifestyle might initially be a pain in the ass.but, really, it's something that's manageable.maybe you won't be going out to dinner as much or buying as many prepackaged foods, but is that really a bad thing?they've got all sorts of gluten-free pastas and crackers, cookies and breads. oh, and by the way, they don't taste like cardboard. in fact, most of them are quite good.anywho. yay(!) for a diagnosis and best of luck transitioning.
ReplyDeleteI agree with a lot of what your saying. I wish we would have chose this option instead of being forced into it but I can see a lot of positives to making the lifestyle change.
ReplyDeleteIf you have this disease too it is going to be harder for you to make the transition then it will for nattie, you're used to regular food. :o) I'm just glad we finally have answers and can get that girl back to feeling normal. I don't know if Gina told you but I've already started a folder for Nattie with information so when you guys come over I can be prepared. I don't want to have you over for supper and you have to bring your own meals. I second the Yay for a diagnosis. A friend of mine also said that she thinks there is a tax rebate for special diets, you may want to look into that for next years tax season.
ReplyDeleteMolly was saying that her co-worker's wife feeds their families gluten-free stuffing and lasagna because he is a celiac and they don't even know it. I get the sense that taste will only be partially compromised with everything, it will be more about the work that is required to make meals.
ReplyDeleteAs for the folder, I have heard. Talk about being sweet. We definitely appreciate your interest in all this.
I've read about the tax rebate too. I will be looking into it for sure.
Whole Foods is very conscientious about Gluten-free diets too. I wonder if you might not be able to purchase some products online- in bulk or something too.
ReplyDeleteWe've heard great things about Whole Foods too (other then that they are priced closer to the natural shops). I wouldn't be shocked if we buy certain things at each of the places and do something like make monthly visits to stock up.
ReplyDeleteOur neighbor's son has Celiac's disease and she has a ton of recipes. I'll try to get some for you. There are gluten free tortillas and she makes him enchiladas that my kids adore. I"m glad Nattie has a diagnosis and I know you'll get through this- it will definitely make you very conscious of what is going into your bodies.
ReplyDeleteJust in the last couple of days alone I've been blown away by all the people who know people who have it, etc., etc.
ReplyDeleteWe'd love to get any recipes we can, especially because we are such a bread and pasta family that this change affects nearly all of our current recipes.
Thank you.
Wow. People really like you (us), don't they.
ReplyDeleteThat's a good feeling huh honey!
No beer? Poor kid. Sounds like that condition is treatable, but for me it would be fatal. Good luck with the new menu and dishes, I'm guessing your stomach will probably be a lot stronger after this transistion (especially not having to deal with all the vomitting). But mostly, glad to hear they found what ails Ms. Lou, and I hope the new diet makes Miss Natters feel a ton better!
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