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I'll be doing BRAG 2013 - Bike Ride Across Georgia for the first time this year. Is anyone else riding this year or have experience with this event? I'm trying to find out what to expect in the way of REALLY gluten free offerings. Any help is appreciated!
This thread appears to be a few months old, but I'm going to respond anyway for future readers.
Yes, I have eaten Nut Thins a few times, and I have had a reaction to them every time. The pecan and almond "flavors" are the only ones I tried. It took me about 3 times to narrow it down to the Nut Thins, but without doubt, any time and every time I ate them I felt really sick for a few days. Then I read the fine print and discovered the warning. Puzzle solved.
For many but not all Celiacs a "gluten free" label does not necessarily mean the product is gluten free enough.
Friday (the day after Thanksgiving) I fly into Charleston, SC. I'll be there until sometime Sunday, when I'll drive to Williamsburg County (Kingstree).
Please if any of you have experience or suggestions for the Kingstree area, I will be forever grateful :-) I'll be there Sun afternoon through Wed afternoon for business. I'll have a rental car, but as I said, this is a business trip, and I'm working with a team of others; our schedule is very tight.
Long story, short, I was diagnosed with Celiac in 2005 (biopsy), and went very strictly gluten free. I had grown pretty comfortable with the gluten free diet and life was good. Then gastroparesis struck. Almost a year ago I was diagnosed with idiopathic gastroparesis, and was prescribed domperidone and cisapride for the gastroparesis itself and zofran for the associated nausea.
At first I could only eat one small meal a day. After awhile I was only able to eat a meal every 2-3 days. Now, it's liquids with a small meal about once a week. Ensure, fruit juices, and recipes on the link below are my mainstays. My gastroenterologist and a gastroparesis specialist (after further testing) are both recommending a GES device trial. I'm thinking about that.
The most helpful dietary information I've found so far is found here:
Diet Intervention for Gastroparesis
Particularly helpful to me were the smoothie recipes beginning on pg 10. They are working very well for me.
I'm looking for ways to incorporate protein into my diet. I see Ensure makes one that is a protein enhanced, but so far I haven't found it around here.
I know that there are a number of us diagnosed with Celiac and also with gastroparesis because I've seen a few threads scattered around here and there. This thread is developed so that those of us diagnosed with both can ask questions, share suggestions, whatever is relevant to someone struggling with celiac and gastroparesis.
I haven't found any reputable research associating gastroparesis and celiac, so I'm not sure "Related Disorders" is the forum for this thread. (I'm not saying there isn't reputable research tying the 2 together; I just haven't found it.) Browsing the forum topics, however, Related Disorders seems the most logical fit.
I'll start us off. Other C & G sufferers please join and let's build a healthy discussion thread!
Between the title and the topic, I've just about asked my question.
Because of severe gastroparesis most of my nutrition now has to come in the liquid form. I drink Ensure, & fruit juices, and make smoothies with yogurt and fresh fruit for nutrition, but protein is my concern. I saw Kellogg's Special K Protein Shakes and Protein Water today.
Does anyone KNOW whether they are gluten free? The ingredients LOOK ok, but that's never been enough for me. Those of you who have been around for awhile know that I was a VERY sick Celiac prior to diagnosis. I still had villous atrophy on biopsy 2 1/2 years after diagnosis and becoming strictly gluten free, even though at the 2 1/2 years the antibodies were negative. All of that is to say, I can't & won't take chances.
You're right, so many people (friends & family) don't understand, but I don't think it's willful disregard, it's just a concept that's not easy to understand. I mean, come on, everybody can eat bread and pizza, right?? What? No soy sauce, either?? Think about it from their perspective, if we're not careful we can begin to sound like neurotic hypochondriacs very quickly.
Celiac is getting more publicity than when I was diagnosed late in '05, but it's still largely unknown to much of the general public. Unfortunately, for us, many (most?) social events revolve around food. I have had to adjust my perspective so that the social event is about the socializing; I don't have to have a fork in my hand to join the fun!
What works for me, when new friends ask me out to eat, etc. is to smile genuinely and say something like, "I have a specific kind of food intolerance that makes it very difficult for me to eat out. I would hate to miss out on the fun, though, so yes, I'd very much like to come. I just want you to know beforehand that I'm completely happy tordering a coke, or something and enjoying the conversation and good company. The only reason I'm even mentioning it now is so that you'll understand later at (??)"
That acknowledges the elephant in the living room, but doesn't make the evening about the elephant. I eat either before or later and get to enjoy the socializing. Friends quickly begin to understand and in a non-threatening way opens the door later to more conversation about my "food intolerance" aka Celiac. Sometimes we go where I can order safely, but the trade-off is that sometimes we go to a friend's favorite restaurant, etc. I don't want to miss any of it When others sense that you are truly relaxed and comfortable socializing without eating, then true friends will soon completely relax with you (and with Celiac), too!
You'll have a great time in social situations if Celiac is something you have, not who you are.