Tuesday, March 9, 2010

the last supper...

Whew. What a day! As promised, here is our update on Caroline's health situation after meeting with the pediatric gastroenterologist today. It's a lot for us to digest (no pun intended!) and there is so much more I could ramble on about, but I'll try to keep everything somewhat succinct and clear.

the facts: In the general population, 1 out of every 133 people have celiac disease (aka. gluten intolerance). Caroline's bloodwork showed that she has a genetic predisposition of a 1 in 10 chance that she will have celiac in her lifetime, even if she WASN'T having any symptoms. (very high risk category) Her form of alopecia (alopecia totalis- loss of all body hair from the shoulder up) and eczema on her skin are both BIG signs that she is facing an autoimmune problem of some sort. (which we already knew) So this could be alopecia caused by celiac, or it could just be alopecia on its own. The rest of the bloodwork was not conclusive to celiac, so the doctor gave us two options on how to continue. Okay, real quick:

Option #1: Put Caroline on a gluten-free diet for 3 months, do a blood test again, then see what the numbers do. (see below for what a gluten-free diet is) If she DOES have celiac, perhaps her hair would begin some regrowth. We'll see. At the end of the 3 months, then we'd do a "gluten challenge," where you re-introduce a little gluten into her diet, and then see what the numbers do on bloodwork.

Option #2: Have Caroline undergo a short endoscopy surgery (under sedation) where they would biopsy tissue from 3 places (her esophagus, her stomach, and her intestine) and hopefully they would be able to "find" the celiac, if it is there. (Celiac is a patchy disease, so even with doing a biopsy in 3 places, it still might not show up, even if it is there.) Anyways, if it DID show up, we'd know it was definitely celiac & they'd say "go on a gluten-free diet for the rest of your life." If it didn't show up, my guess is that Marc & I would probably still wonder what would happen with a gluten-free diet. And we would go on the diet anyway.

So can you guess which option we chose? Yep, after writing out a pro & con's list on the ride home, we chose option #1, the gluten-free diet. Let's skip the unnecessary cutting on our 2 year old and get started on a healthy plan right away!! My thought is that even if it's NOT celiac, this has to help her little immune system calm down somewhat, right?

Well, after such a big day and a big decision like this, we couldn't jump in quite yet, so we had an official "last supper" filled with GLORIOUS GLUTEN together. :)

You got it. A big ol' pizza and a salad with lots of CROUTONS. :)

Tomorrow morning we begin gluten-free.

Here's a few things that I quickly pulled together to give you guys an idea of what you can eat that's gluten-free: any fresh fruits. any fresh vegetables. any fresh meats. (not shown) any rice or rice product or potato or potato product. Just no breads or wheat/oat/barley/rye products. (but now you can buy "GF" pizza crust mixes, GF pastas, GF brownies and cookies, GF bread, and just about anything else you can think of!)

It's definitely a do-able diet, but much more expensive and much, MUCH more inconvenient. You have to use separate cooking utensils. You have to use separate toasters, peanut butter jars, butter dishes, etc. Eating out is almost impossible, because you have to know exactly what seasonings are being used, whether a utensil has touched an ingredient with gluten in it, etc. Even a ketchup bottle has probably touched someone else's bread before. You can't cheat ONE BIT.

But as expensive and inconvenient as it all is and will be, I love my daughter. And I'm willing to do anything and everything in my power to give her little body every opportunity to get better. Right now, we feel relieved to be doing something and to have a plan, yet exhausted and overwhelmed at the major changes we face. (anyone with EASY GF recipes & ideas, please send 'em this way!)

So thank you for all of your prayers. We are gonna NEED them now! SO many overwhelming thoughts go through my mind:
  • what am i going to feed her?
  • can she have this? can she have that?
  • i have SO much to learn & figure out right NOW!
  • how will we handle certain social situations with food?
  • how will we eat out? (if you know us, you know we LOVE to eat out) :)
  • how will SHE handle the small changes?
  • how are WE gonna DO this? (i refuse to cook 2 separate meals each mealtime)
So many things, so many changes. Agh!

I realize this post is getting way too long, so perhaps I'll stop here and say "to be continued..."

Starting tomorrow, we're gluten-free.
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  1. Thanks for the detailed post. I hope this gluten-free diet will clearly reveal what you need to know and make the effort, expense, and inconvenience totally worth it.

  2. Amy-
    I know the Forest library has some great resources out there for recipes for gluten free. Also-I know of some folks at church and work who are doing this gluten free thing (one has a 3 year old!). Please let me know if you'd like me to be a middle woman here for you to get some great ideas/support. Also-might be worth googling to see if there is a gluten free support group in the area. Sounds silly-but there might be such a thing... never know!
    I couldn't imagine going gluten free. I'm a glutton for gluten.

  3. Hey Amy,

    We'll all be praying that the gluten-free diet helps with the alepecia. As far as eating out goes, Applebee's and Moes are both good choices. I knew someone in FL who had celiacs and whenever we went out to eat with her we usually went to one of those.

  4. There is a reason for everything. Remember your sister-in-law has been doing this for a while (over a year). Hope you all can share ideas. God is so good. He got us prepared for what is happening now some time ago. Isn't that wonderful? I know for the sake of Caroline, you and Marc can do this. We are definitely praying for you. It will not be easy until you get used to the changes. It will probably be easier for Caroline than for you and Marc. We love you and support you. I think this is the beginning of the answer to her alopecia. It is worth the effort.

    Love y'all,

    Nanny & Papa

  5. I was in Market Street last night, and noticed they had a little "gluten-free" section, which made me think of you. We will keep praying!

  6. Well, I'm sure you will become a gluten expert in no time! By the way, I heard P.F. Chang's and Pei Wei have a gluten-free menu.

  7. Have you talked to Aurora? She's been gluten free for several years now. I'll mention it to her at Lily's piano lesson tomorrow. Meanwhile, will pray for God to give you wisdom and patience and peace through all of this, Amy.
    Marilyn Lashaway

  8. Sir Isaac Newton
    Ate some gluten
    Before the apple fell.
    "Oh," said Newton
    Rootin' 'n tootin'
    "What's that awful smell?"

  9. Gluten free peanut butter cookies that I've made a few times now. They are AMAZING.


    Love you all!

  10. Can I just say that poem is FUNNY?!?!

  11. www.theglutenfreemommy.com
    it was pretty awesome and had lots of pantry recommendations. wanna try the pizza :)

  12. Amy,

    Thanks for sharing your heart! I will def. be praying. Your comments brought to mind a first grade student that I had several years ago who was pretty much allergic to everything we would serve at a class party. His mom would find out what the other kids would be eating and then do a really nice job of providing similar things for him with things he could eat. None of the other kids thought any different because they knew he was allergic. Hope that gives you some food for thought about social situations, haha!

    I know the coming months will be hard, but I know that our God is big and he's got Caroline covered!

  13. Hey Amy! Excited for your new adventure. Gluten-free is highly encouraged for all humans (not just those prone to celiac dz). As a family, you'll notice increased energy levels, decreased frequency of illness and disease. It's a good thing!

    One of my colleague's from school posts a lot of articles about his gluten-free group on Facebook. Here's another link to his page on a gluten-free social network. Dr. Osborne scours the latest research articles on gluten-sensitivity and shares it with readers in a digestible format (no pun in tended).

    I didn't introduce rice or grains to my son until AFTER he was a year old. Now, he only gets those things sparingly...mostly we do the fresh veggie/fruit/grassfed beef and poultry (and eggs) thing. The way our bodies were designed to consume fuel. (Check out The Primal Blueprint book for more info...or anything on Paleo or Primal Diet).

    on my wishlist, the paleo cookbooks...guaranteed GF recipes in there!

    There are a lot of GF options on the market. I like buckwheat...it's made from sorrel root (same family as rhubarb). It makes thick and hearty pancakes...GF!

    Sites I enjoy: Gluten Free Goddess

    Food Renegade (another Texan)

    occasionally, I post GF recipes on Traveling with Baby...more to come this year.

    can't wait to hear how things go for your family...once you get the hang of it. it IS a paradigm shift...but a GREAT shift!

  14. Hope that you are able to see some results soon! This blog has some great gluten free crock-pot recipes!

  15. http://www.crockpot365.blogspot.com/