2008-05-23

Books on Celiac Disease



Maybe it's just me, but I was hungry for any kind of information that I could get my hands on regarding celiac disease. I had to understand why, how, and what. I love this book, "Celiac Disease: A Hidden Epidemic" by Peter. H.R. Green. He shares a lot of information, and the format that it is presented in is very easy to follow and understand. The only downside is that he advocates blood work to test for celiac disease, and for that the person has to resume a gluten diet if they have already adopted a gluten-free lifestyle. I believe this is unnecessary, and kind of crazy.

I did a test through Entero Lab. They offer a variety of tests, from a stool test to a mouth swab test. I chose the "Gluten Sensitivity Stool and Gene Panel Complete" because it offered the best selection for me and you saved money doing the set of tests. It included a test for intestinal malabsorption. And the best part, you do not have to resume eating gluten if you have already stopped. I mean, why risk more intestinal damage? For me, it just was not an option. I could not resume feeling like vomiting after every meal, and having my daughter break out in alligator skin thick rashes from the gluten in my breastmilk.

Ah, it is a true joy to be gluten free. Have you ever had people look at you with pity "Oh... gluten free? That must be hard"

Ha. I give them a look of surprise. "Why, no, not really"

The only hard part is avoiding gluten cross contamination and mislabeling of products. I do not find it hard to be gluten free. I do not miss it at all. There are so many wonderful things that you can eat that are gluten free, why lament on it?

So in truth, yes, I find it hard to be gluten-free because of contamination issues, but not because I miss gluten. Far from it.


À La Carte:
»Celiac Disease: A Hidden Epidemic

»Kids with Celiac Disease

»Gluten-free Friends: An Activity Book for Kids

I have something else to say, and it's not too pleasant. If you are eating at the computer, though, I'd have to say you shouldn't be. It is bad for you. I read that somewhere, so it must be true.

My mom recently told me about this. She spoke to a lady who has celiac disease and she shared a story with her. The lady ate at Outback Steakhouse from their gluten free menu. She ended up in the hospital, having horrid stomach pains and bleeding from her intestines because the meal was not really gluten free. There's a big ado about it. But you probably won't be hearing that on the news. First of all, I would not be eating at Outback Steakhouse. But I realize that some people do, and so I have to respect that.

I have a confession to make anyways. I have not eaten out since I found out that I have to be gluten-free. I am too afraid. I have a hard time trusting people, especially when some people have never even heard of "gluten free", "celiac disease", or "gliadin"

Do you find it hard to be gluten free? What are you tips? Share with us if you'd like.


-heather



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4 comments:

Vittoria said...

I would never, ever go back to living the way I did when I was eating gluten! It's not hard at all, for me. Foods that you prepare yourself are probably a zillion times healthier than pre-packaged things anyway. I'm able to have full control of what I eat, and get back in touch with cooking and the plants and nuts and base foods. My feeling is the less processed the better. Eating out can be difficult, I recommend checking out Allergic Girl for tips on e=how to communicate with restaurants and waitstaff. The hardest thing for me is that my mother-in-law (who I live with) doesn't speak English and it's been a bumpy road getting her to understand the do's and don'ts. We finally settled on: I'll eat what the rest of the family eats only if I prepare it, otherwise, I'm one my own. Everybody paves their own path.

Kristi said...

No matter what anyone says, eating out is ALWAYS risky. You never know when your food is being cooked on the same spot, in the same bowl or with the same hands as gluten food.

We have a certain restaurant in our town that has a large GF menu. They know me well and take really good care of me. Haven't been glutened there once... everywhere else, well, it's hit and miss.

Some tips for eating in a strange place:

1) Try to get online ahead of time and see if they have a GF menu availible. If not, call the place and ask. Don't be afraid to, this is your health we're talking about and these people are used to the questions.

2) Stick with things that would already be GF, or that can be fixed with only simple tweaks. The more complicated, the more likely the place is to mess it up. You might have no idea if you've never eaten there before. Good examples are authentic corn-based Mexican food, salads (w/o dressing unless you know it's ok), Vietnamese food, etc.

3) Language barriers are a bitch. On the rare occassion we go to an Asian restaurant without Native English speakers, the question isn't about gluten, it's about soy, since most soy sauce has wheat in it. The word "gluten" just gets lost. I don't think it translates well.

4) Find a place that you're comfortable with and stick to it. If you keep coming back, they will eventually remember you and will take better care of you.

5) Last, but not least, tip your server extremely well. It's worth an extra buck or two to develop that loyalty and let them know you're not just a picky pain in the butt.

And how to approach the server at a new place if you're GF? I always start the meal off by giving them what I now refer to as "My Gluten Speech."

It roughly goes like this: I don't want to be a pain, but I'm allergic (this is a concept everyone understands) to gluten, which is found in wheat, rye and barley. If I order something that I shouldn't (you should have already done your homework), I hope that you would tell me and please check with the manager before putting it in. (If you don't think the server will check with management, ask for a manager instead).

If you get "there's no wheat in our bread" at some point in the conversation, get up and leave. There is clearly a problem. I have heard this enough here in the Midwest that it's not funny anymore. If everyone looks confused (including the manager) about gluten, get up and leave.

Well, that's about all I know about eating out GF style. It's tricky until you figure out who has their head on straight. You'd be suprised, though, how many restaurant people are in the know on the gluten front.

Kelly said...

Eating out is always a risk, but it's one that I take with caution. Luckily we are in the Boulder area of Colorado, where there is *much* greater awareness than previous places we've lived.

That said, I use a kind of trick when I go somewhere new. I ask the server or hostess if they offer "gluten-free." Right away I can tell by the look on their face if they have no idea what I'm talking about. Around here they usually do. Even at a Thai place the server knew that soy sauce was mostly wheat, and steered us to the dishes that were free of soy sauce. (I also always make sure the food isn't marinated! Nine times out of ten, marinades contain gluten.)

If the server or hostess gives me the "Hu?" look, I either very politely ask to speak to the manager, and repeat the question to see how the manager reacts, or turn around and leave, with a "Thanks anyway" on my way out.

We nicely asked to speak to the manager at a California Pizza Kitchen a while ago, because trying to read their GF menu was like deciphering morse code. She was very helpful, and told us to get the Waldorf Salad, with the grilled (not marinated!) chicken, which I substituted with avocado anyway. The balsamic dressing there is gluten-free, as opposed to some of their others, and really good by the way.

Often times when I think I am having a reaction to a gluten contamination at a restaurant, it turns out that while I was careful not to eat any wheat, I missed some dairy that snuck in there. I'm okay with goat milk, but give me cow milk or butter and I am sick, sick, sick.

Cheers to all you beautiful GF guys and gals :-)

veggiemama said...

thanks for all your helpful comments!! There will probably come a day that I may eat out again. But, I really enjoy simply eating at home... it is cheaper too :)