Thursday, November 30, 2006

Do as I say, AND as I do!

How often have you been sitting in a doctors office and you have wanted to ask, "And you would know this how? From personal experience? I thought not." Yes, our doctors are experts in their field. They studied long and hard, have worked with countless patients. The thing is, nothing is more illuminating than personal experience. This was made hugely evident to me in the last month. My GI, upon delivering my official diagnosis, said "Just avoid wheat, malt, barley, and rye. Don't worry, corn and rice are safe." That's it. No elaboration. Let's just say, this is a man who has not had to live a gluten free lifestyle for even a single day of his life. Today I had quite a different experience. I had an appointment this afternoon with a dietitian. The University of Chicago has one of only two research programs in the nation focused on Celiac Disease. They have a well established support program. I figured if anyone would have good resources for the newly diagnosed it would be them. I gave a call and was given a name of a dietitian at Rush Hospital (their dietitian is completely booked.) So this afternoon at 3:30 I had my initial appointment with the recommended woman. Now here is the difference between knowing and living what you preach. My doctor said to avoid gluten filled ingredients, my dietitian told me which company makes the best chocolate cake mix (she likes Namaste.) She has Celiac. She lives gluten free every day of her life. She isn't just telling me what she has heard from patients or learned at the recent Celiac conference, she shares that first hand knowledge of a fellow gluten free-er. So I though I would share my new, expensive knowledge (darn insurance won't cover the appointment!) Here are her recommendations:

-Namaste Chocolate Cake Mix
-Namaste Pizza Dough Mix
-Breads from Anna (especially the pupmkin bread mix)
-Ener G pretzels
-Nature Made vitamins
-Tinkyada Pasta (well, duh!)
-a bread company in Brooklyn is supposed to make amazing bread (gotta look into that)
-Gluten Free Living magazine

She had a few medical recommendations for me, as well. In addition to taking a good multivitamin, she said to make sure I am getting B12, folate, iron, and calcium. I should get my iron levels screened and have a DEXA-scan (bone density test) to make sure I don't have osteopenia or osteoporosis. Yikes! Since it has only been about a month into my gluten free diet she said I should not worry about my weight. I was advised to increase my caloric , protein, and (good) fat intake. More nuts. Slightly larger portion sizes. If near the end of January (after all the crazy holiday eating) I have not gained weight or (worse) lost more weight, I need to get my thyroid checked. Apparently, hyperthyroid can be triggered by, or connected to, other autoimmune disorders. Joy. We are going to work on the assumption that I have just been eating healthy and therefore have simply maintained my current weight. (I know, I know, shut up you skinny twit.) So yeah, eat more good food.

She was happy to see I had started a food log. I think this put us way ahead in this process. Actually, she said that in the six years she has been counseling individuals with Celiac, I have the most varied and healthy diet she has seen. I give props to all of you for this. You have given me so many ideas and a wealth of inspiration. Thank you to all of you for you support and excellent recipes!

One of the coolest things I got out of my appointment was the care package. U of C puts together a care package for the newly diagnosed. It is great. My fav from it so far is the Ener G pretzels. YUM! These suckers are great. At least as good as "normal" pretzels. Now I want to make Pretzel Jello with these crispy, crunchie jewels. I can't wait to try the Namaste Spice Cake, Bread from Anna, and one other baking mix I had never heard of. Here, take a peek!

Some of the items are questionable (Kraft dressing), but the rest will be used. Oh yes, free GF food stuff will always be used.

1 comment:

Mike Eberhart said...

Shannon, you are so right about how personal experience helps a doctor (or anyone) best understand and help you cope with this condition. I have yet to find a doctor as such, and I always feel that my primary care person is a joke, since he just never seems to "get it". My allergist is the best, since she is at least aware of the condition and other people with sensitivities to wheat/gluten. Glad you found someone with a clue.

As for the "bread company in Brooklyn is supposed to make amazing bread"... you are referring (I presume) to "Everybody Eats" ( Burce Bassman and Pedro Arroba are the owners, and yes, after meeting Pedro and sampling some of his bread in Colubus recently, they really have some top-notch GF products. Even their cinnamon rolls were quite convincing. The only bread I tried that they had handy was a type of french-bread they had sliced and toasted and topped with garlic oil or something -- it was quite good. You can mail order from them, but I have yet to check into that.

If you do mail order any, let us know how your experience goes.