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suebright

Top Priorites To Watch For

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As a basic newbie I would really appreciate the input from those with more experience concerning the most important things to pay attention to. For example could you please name the top two most important things to watch for apart from the obvious one of checking for gluten & cross contamination. Thanks.

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Not sure exactly what you are looking for here..... but hopefully I can help in some way.

Hidden places for gluten can be:

Shampoo/condition/lotions/bodywash...etc.

toothpaste

dish soap

chapstick/lipstick

old tupperware type containers

old wooden spoons or other porius surfaces

cast iron skillets

non-stick pans if the coating is starting to wear off or is scratched

seasoning/sauces/marinades

some people are even so sensitive that they get CC'd when they touch door knobs or light switches that have been glutened.

Some people are sensitive to flour dust in the air, not that it gets on your skin, but you inhale it and therefore end up ingesting some.

Hope this was some help for you!! Welcome to the club and good luck with the change, it can be challenging, but is worth all of the effort.

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To try to boil it down I would suggest the following. If you are in the US, there is a food labeling law that requires the listing of wheat on the ingredients. However, don't forget we also can't have rye, barley, and oats that are not specifically certified gluten free. Also - wheat free does not equal gluten free.

Hope these two things help to get you started.

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Watch out for "malt flavoring", "malt extract" or "malt vinegar" in ingredient labels. Those are almost always barley-derived.

Despite what some health-food junkies might tell you, spelt is not safe. It is a varietal of wheat.

Watch out for anything that is marinated. Often marinades contain soy sauce and most soy sauces contain wheat.

You might already know this, but simply removing, say, croutons from a salad is not enough. The teeny crumbs left behind are enough to make you sick (I learned this the hard way). Ditto for a grill surface that gluten foods have touched. The gluten can't be burned off and the entire grill rack will need to be scrubbed down before it is safe (also learned this the hard way).

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Also, I'd suggest that you get a book to help you make sense out of all the information here about celiac/gluten intolerance. My recommendation would be either

1) "Celiac Disease: A Hidden Epidemic" which is a comprehensive view of current medical thinking on the disease/condition as well as how to live with the disease/condition or

2) the pocket size "Ultimate Guide to Gluten Free Living" by the Columbia Center which breaks down the most important information you need to be gluten-free.

Or, both!

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Hi suebright & welcome!

When I first joined the board, I found the amount of information overwhelming. I thought that it would be a simple process to cut gluten out of my diet, and then I'd be done with it! I've found it's way more complicated than that (unfortunately). By the time we are diagnosed, our bodies have been through a lot. Even if the process goes smoothly, it will still take months or even years for your body to heal entirely from the effects of putting what essentially amounts to poison down your gullet for years and years.

1) To begin, I'd suggest that you focus on keeping hidden sources of gluten out of your diet. As everyone has chimed in, it's often easy to accidentally consume the stuff without realizing it. As you recognize in your post, cross contamination can also be an annoying, albeit manageable, issue.

2) After you've got that down, I'd focus on making sure that you're getting the nutrients you need from your diet. Going gluten-free is a huge shift in diet, and it may take time to figure out how to eat balanced, healthy meals. I was so exhausted when I first went gluten-free that it was hard to even put meals together, never mind balanced meals.

You may find as you move forward that you are still suffering specific symptoms. If you have a specific issue, people are great at giving you detailed advice about how to deal with it. :)

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-- Soy sauce. :ph34r: Just saying. Oy...

But seriously, I have nothing to add to what the others have said. I bought the "Dummies" book on gluten-free living and it's been very helpful. It lays out everything to watch for, and tells you about avoiding certain things in the beginning (like dairy, or oats) which you might be able to add back in later.

And... soy sauce. :rolleyes:

(saying farewell to my favorite Chinese restaurant, at least to what I usually order there.)

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I wouldn't give up on your favorites there if you are only worried about the soy sauce....I asked my favorite place (I was a regular before I was diagnosed) if they could use a fresh pan and my own soy sauce...and I was surprised when she knew what I was talking about and had another customer that also has celiac. It has been no problem for me to bring my own sauce in and get a fresh excellent meal, safely! I had avoided the place for months because I didn't think they would understand what I was talking about, but even though they only speak broken english there she was well aware of what I was talking about.

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1 Another thing to watch out for is additional food intolerances. Many of us have them and it can take a while to figure them out. An elimination diet is a good tool for that effort.

2 Processed foods in general are risky and should be carefully checked.

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Based on what I've just been through, I'm going to say two things that are a little fuzzier, not so much places to find gluten, but concerns for celiacs, rather. I think I'd say these are the top two things I'd look out for:

1. Ignorant medical personell. In other words: hunt down some good docs, dentists, pharmacists, etc...

--If you have any procedures that will require medication, you will be happy if you plan ahead and make sure your medication is available, and gluten free, when you need it. I've had to get a number of prescriptions, one surgery, and been to the ER five times since going gluten free. Only one pharmacy actually checked to see if my prescriptions were gluten free (this seems typical, based on what people have told me), even though it is listed that I am celiac AND allergic to gluten. Most of them didn't know whether their medication had gluten and would give me the number to call the manufacturer to find out. After surgery, I had to go without pain medication for three days because no one in town had gluten free meds I could take and they had to be ordered. Only once at the ER did a doctor actually pay attention to my gluten free needs when trying to give me medication. A couple of the docs just tried to get me to take the medication anyway, since celiac disease wasn't an allergy so gluten wouldn't really cause that much damage anyway. <_<

--There is also the doctor who doesn't believe celiac disease will affect anything other than your gut, so if you suffer from medical issues, they won't think to look for damage that could have been caused by vitamin or mineral deficiencies, or other problems associated with the disease.

2. People who try to get you to doubt yourself. The ones that tell you that it can't really be that sensitive even when you feel sick, or tell you that something is safe even when you are not feeling comfortable that a food item/restaurant/party snack is gluten free. I read about more people who get a 'bad vibe' about a place they're eating, or food that a friend or family member made, and get glutened. But we don't want to make waves, or seem like a pest, or ask questions when our friends and family are so sure that the food is safe. Well...some of us were raised like that, LOL. I think that for those of us raised not to make too much of a 'scene,' we can let ourselves get dissuaded from making sure of our own safety, just out of societal or peer pressure. So...that's one of the big ones to look out for as a celiac, too. Trusting ourselves in the face of people who doubt us. :)

As a basic newbie I would really appreciate the input from those with more experience concerning the most important things to pay attention to. For example could you please name the top two most important things to watch for apart from the obvious one of checking for gluten & cross contamination. Thanks.

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Hi and welcome.

My "look out" is for well-intentioned friends and family. Always read labels yourself and offer to help cook. I have had friends tell me things were gluten-free, but the manufacturer changed something, or they missed a gluten ingredient.

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Based on what I've just been through, I'm going to say two things that are a little fuzzier, not so much places to find gluten, but concerns for celiacs, rather. I think I'd say these are the top two things I'd look out for:

1. Ignorant medical personell. In other words: hunt down some good docs, dentists, pharmacists, etc...

--If you have any procedures that will require medication, you will be happy if you plan ahead and make sure your medication is available, and gluten free, when you need it. I've had to get a number of prescriptions, one surgery, and been to the ER five times since going gluten free. Only one pharmacy actually checked to see if my prescriptions were gluten free (this seems typical, based on what people have told me), even though it is listed that I am celiac AND allergic to gluten. Most of them didn't know whether their medication had gluten and would give me the number to call the manufacturer to find out. After surgery, I had to go without pain medication for three days because no one in town had gluten free meds I could take and they had to be ordered. Only once at the ER did a doctor actually pay attention to my gluten free needs when trying to give me medication. A couple of the docs just tried to get me to take the medication anyway, since celiac disease wasn't an allergy so gluten wouldn't really cause that much damage anyway. <_<

--There is also the doctor who doesn't believe celiac disease will affect anything other than your gut, so if you suffer from medical issues, they won't think to look for damage that could have been caused by vitamin or mineral deficiencies, or other problems associated with the disease.

2. People who try to get you to doubt yourself. The ones that tell you that it can't really be that sensitive even when you feel sick, or tell you that something is safe even when you are not feeling comfortable that a food item/restaurant/party snack is gluten free. I read about more people who get a 'bad vibe' about a place they're eating, or food that a friend or family member made, and get glutened. But we don't want to make waves, or seem like a pest, or ask questions when our friends and family are so sure that the food is safe. Well...some of us were raised like that, LOL. I think that for those of us raised not to make too much of a 'scene,' we can let ourselves get dissuaded from making sure of our own safety, just out of societal or peer pressure. So...that's one of the big ones to look out for as a celiac, too. Trusting ourselves in the face of people who doubt us. :)

Both of these are SOOO TRUE!! And trust yourself!! I know when I get Glutened and my husband knows that now, for the longest time he would question it. Now he accepts it and just tries to help the best he can.

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