Rules To Live By So You Can Avoid Getting Glutened

[Lisa16]

I have been reading this thread for about a year now and a couple of times I have seen posts by "old timers" or moderators with rules to help newbies. I have a couple of them here (with attributions). Can you add some more to help new people out?

From Happygirl:

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

From Larrymac:

If you order food from a restaurant, only order one item so that if it makes you sick, you know what did it.

What other rules to live by would you give a newbie?

[mef]

Just because you wish it were gluten-free, doesn't make it so. Go with your "gut instinct". Even if the label doesn't list wheat products, if it seems like it would/should have wheat, hold off on it until you can call the manufacturer.

This one will sound silly/gross, but if you are in a public place, check the water fountains before you drink out of them. You'd be suprised to see what people rinse out in a water fountain i.e. cereal bowls. I now stick to carrying a bottle of water with me that I filled up at home.

[happygirl]

Disagree with the above post. All FDA products are required to list wheat. It would be in violation not to fully dislose wheat. Used in conjunction with the food labeling law, the list of companies with clear labeling policies is, generally, enough to make an educated decision on whether a product contains gluten or not.

[greendog]

My rule of thumb is I put the products that actually say Gluten Free on the label at the top of my list. Then I add things that don't have gluten type products on the labels, but very carefully (example is I just heard that Prego has added Oats and/or Barley to their Pasta recipie). I also try to avoid foods with a lot of ingredients. Good example is regular Lays potato chips have like 3 ingredients but the Lays Barbeque potato chips have like 40 ingredients, so I'm thinking how many gluten based chemicals does it take to give something barbeque flavor? Same thing with medicines, health regimens and the works. Avoid complex foods that are hard to analyze if you have a gluten reaction.

[Gemini]

Disagree with the above post. All FDA products are required to list wheat. It would be in violation not to fully dislose wheat. Used in conjunction with the food labeling law, the list of companies with clear labeling policies is, generally, enough to make an educated decision on whether a product contains gluten or not.

I would agree with you on this and I think one of the most often given piece of advice that is not true is the "hidden gluten" idea. Wheat has to be listed as an ingredient if it is in the product. I think where people become confused, especially if new to this lifestyle, is their not-yet-learned knowledge of what some food components are and whether they are fats, carbs, proteins, etc. Some basic knowledge will easily help you figure out what is safe and what isn't. I have also found that most of the non-mainstream canned or boxed foods I buy rarely, if ever, change their ingredients so I have had no problems in that department. I use none of the stuff that can be bought in a regular grocery store because more often than not, they use corn syrup in many products. Corn syrup is gluten-free but it's really bad for you so I avoid it.

As for the only ordering one thing at a restaurant, that is pretty much going to take the pleasure out of going out to eat! If you speak with the server or manager and are careful with food choices, you should be able to dine out without too many problems. I have been incredibly lucky with this as many restaurants around me offer gluten-free options or are gluten-free savvy. They are trying so you have to give them credit. I think going out highly depends on where you live so it's not easy for everyone. Come to the Boston area.....we have so many options here and it makes such a difference with quality of life!

My only advice is to learn as much as you can about food in general and that will give you the basics for living a much easier gluten-free life!

[lizard00]

My only advice is to learn as much as you can about food in general and that will give you the basics for living a much easier gluten-free life!

I couldn't agree with that more. It makes life easier when trying to read labels. You also learn about the "stuff" they try to pass off as food.

[Amyleigh0007]

I don't consider myself an "old timer" but we have been at this for 9 months now and it is getting easier for the most part. The thing that helped me was to educate myself as much as possible about Celiac Disease. I was on the internet for hours each day and checked out all the library books I could find. The book that helped me the most was Gluten Free for Dummies by Danna Korn. It is written in simple language. It also helped that Ms. Korn is funny and I needed humor at that point in my life. Also, we are very brand loyal. I realize that compaines change their formulas and you should always check labels but knowing that companies like Kraft will always disclose gluten is very helpful.

[dilettantesteph]

I try only a small amount of a new food the first time and only try one new food every three days or so. That way I can figure out what bothered me. Or at least I try to do that. Gemini, you should read the posts about the Wellshire farms chicken fingers. Hidden gluten does exist.

[alba]

I also try to avoid foods with a lot of ingredients. Good example is regular Lays potato chips have like 3 ingredients but the Lays Barbeque potato chips have like 40 ingredients, so I'm thinking how many gluten based chemicals does it take to give something barbeque flavor?

totally agree, and that's my rule too!! the less they "mess" with it, the safer it (probably) is.

Also when I go to restaurants, I order the grilled chicken/steak/whatever with baked potato/vegetables no sauces, no toppings, no nothing! the less they have to touch it, the less they'll be able to contaminate it.

[JNBunnie1]

I try only a small amount of a new food the first time and only try one new food every three days or so. That way I can figure out what bothered me. Or at least I try to do that. Gemini, you should read the posts about the Wellshire farms chicken fingers. Hidden gluten does exist.

This was truly disturbing. Here's a link: Open Original Shared Link

[rumbles]

Whoops! Edited - duplicate post . . . see below.

[rumbles]

I am so glad to see this thread! Let's make it the ultimate resource guide for

everyone that is new to the gluten free diet!

I met a woman in crisis today in my local health food store, - she was diagnosed

as gluten intolerant and told to follow a gluten free diet, but noone explained to

her what that really means. There she was, in an extremely weakened state,

has been sicker than anyone should be, looking and praying for answers, because

her doctors haven't been able to help her. She's in a health food store with a lot

of great stuff, and a very helpful staff, but again, noone knew the info that she

needs. No one explained that all vitamins, all prescriptions, all makeup, shampoo,

laundry detergent, have to be checked to make sure that they're gluten free. No

one told her that she can't use the old wooden cutting boards, or teflon pans, or

the old toaster. No one explained that she has to go through everything in her house

to make it safe for her. Until today, noone showed her that she needed to contact manufacturers of all products that don't state that they are gluten free.

If she follows the info that I gave her, which I'm sure she will, she will be joining us at celiac.com, and this is exactly the kind of thread that she will need to find her way to being healthy again.

The following are my random thoughts as to things that might make this thread better for those that are new to the diet and looking for answers, in case anyone agrees and has time to post:

Post a list of the manufacturers that agree to list gluten if it is in their product on

this thread. (Maybe we should have a new category specifically for those that are

new???) How about a list of manufacturers that we know that don't list if gluten is in

their product? Maybe an explanation of how to search manufacturers web sites to find

gluten info? Stuff to look for in labels.

rumbles

[caek-is-a-lie]

Disagree with the above post. All FDA products are required to list wheat. It would be in violation not to fully dislose wheat. Used in conjunction with the food labeling law, the list of companies with clear labeling policies is, generally, enough to make an educated decision on whether a product contains gluten or not.

But that can't be true. Because I ate some Safeway seasoning that made me super sick and it didn't say "wheat" on it, but it did have "spices" in it and when I called they said it contained gluten. You can't get away from the hidden gluten in labeling where it's used as a thickener or binding agent. They should be required to specifically cite "gluten" on labeling, not just "wheat". I don't think the rules are strict enough.

[GFinDC]

Disagree with the above post. All FDA products are required to list wheat. It would be in violation not to fully disclose wheat. Used in conjunction with the food labeling law, the list of companies with clear labeling policies is, generally, enough to make an educated decision on whether a product contains gluten or not.

True enough, they are supposed to list wheat, and the other major (official) allergens. There is a catch though, because gluten is in rye and barley also, and there is no requirement to list rye and barley in the allergens alert section of the label. So it does indeed pay to read the labels carefully.

The Chicago Tribune article was very informative about hidden gluten in foods that are labeled gluten free. Another possible source of hidden gluten is alcohols, as there is no requirement to list all the ingredients in alcoholic beverages. Some wines might contain gluten for instance, used to help fine or clear the wine.

A good idea is to learn to cook gluten free meals yourself, and start with a simple meal plan and expand your foods slowly as you learn.

[codetalker]

Disagree with the above post. All FDA products are required to list wheat. It would be in violation not to fully dislose wheat. Used in conjunction with the food labeling law, the list of companies with clear labeling policies is, generally, enough to make an educated decision on whether a product contains gluten or not.

What you are saying about labeling is absolutely correct. Nonetheless, i still would have to disagree with your conclusion for a couple of reasons. IMHO, clear, legislated labeling is not enough to make a decision. I think you yourself agree with this due to your inclusion of the word "generally".

First, there is always the chance of accidental cross-contamination. Some products and/or manufacturers are more prone to that than others. For instance, manufacturers which use shared facilities can run into this.

Second, on rare occasions, manufacturers do not know everything in their product. Case in point: A very long time ago I tried soy sauce from a niche manufacturer. Their product was listed on gluten-free lists. I consistently had an extremely slight reaction. I contacted them about this. They very kindly sent a sample of their product for testing and discovered to their surprise that it contained 0.006% gluten.

Third, when I first started this diet I ran into consistent reactions to three specific products that contained caramel coloring. These products were then and are now on everyone's gluten-free list. I am a bit OCD when trying new foods and can attest that for me only that these products contain gluten that I react to. Again, the reaction is very slight not nevertheless there.

Bottom line, my top rules are:

1) If the product states it contains gluten, take the statement as an absolute. Take all other statements with a grain of salt. They may or may not be correct. The absence of trigger words in the ingredient list (i.e. wheat, barley, oats, etc.) is not a guarantee of a product's gluten-free status.

2) Listen to and trust your body. If you think you are having a reaction, then you probably are.

3) Just say, NO. Do not let family and friends pressure you into eating anything. After years of poisoning by people "just trying to be nice", I've adopted a "just say no" policy and have never looked back. Now that everyone knows that I will not eat anything they give me, they have progressed beyond hurt feelings and simply accept my policy.

[happygirl]

But that can't be true. Because I ate some Safeway seasoning that made me super sick and it didn't say "wheat" on it, but it did have "spices" in it and when I called they said it contained gluten. You can't get away from the hidden gluten in labeling where it's used as a thickener or binding agent. They should be required to specifically cite "gluten" on labeling, not just "wheat". I don't think the rules are strict enough.

I'm sure others would appreciate the warning on which type of seasoning this was, so that we can be cognizant of this concern. It doesn't have to say wheat to have gluten in it.

------------

While the labeling laws are NOT perfect, they are certainly an improvement over what was before (nothing regarding wheat). I'll still take this over the past. There are steps being taken by the FDA for definitions of gluten free - lots of info on this site, FDA's site, and other Celiac sites about this.

[dilettantesteph]

Another bit of advice I have for newbies is that celiacs vary in their tolerances to gluten. Some will insist that a certain product can't have gluten because they eat it all the time. Others insist that it has small amounts because it makes them sick. Others will insist that you must have some other food allergy if you are reacting to that product. Then testing is done and sometimes gluten is found to be present. Bottom line is, just because someone insists that a certain product is safe, it might not be safe for you.

I don't know if anyone mentioned lactose intolerance. Newbies should eliminate lactose at first because it can really confuse you as you try to figure out if you are reacting to gluten.

[Gemini]

I try only a small amount of a new food the first time and only try one new food every three days or so. That way I can figure out what bothered me. Or at least I try to do that. Gemini, you should read the posts about the Wellshire farms chicken fingers. Hidden gluten does exist.

I guess I should define what hidden gluten actually means. I believe the Wellshire Farms problem was due to the company not being careful with their manufacturing processes? That's not a hidden gluten problem, it's a cross contamination problem. And if they do not batch test their supposed gluten free product, then they cannot claim it's gluten free.

Hidden gluten was defined as ingredients listed on a particular product that people thought contained gluten and didn't think the company was disclosing. There are still many misconceptions about some product's gluten-free status. There are many who still think you cannot have vinegar when the only one not allowed is malt vinegar or one with an additive put in after distillation. If there is wheat gluten in a particular product, it has to be listed on the label.

I do not eat breaded chicken nuggets but have tried some of Wellshire Farms luncheon meats without any problems. As there were not that many complaints from consumers, it may have been an irregularity at that particular time. Or, the child that had the misfortune of having a reaction could be super sensitive to wheat (it's an allergy he had, not an intolerance) and would react where the majority of others do not. Whatever the case, Wellshire Farms should be batch testing their products if they want to put "gluten free" on the label! I also have to add that all the foods listed in the article that were found to have allergens in them and have been recalled at various times were foods that I probably would never feed to a child anyway. Pop Tarts, Frosted Flakes and Spaghettios? If you have a child with allergies, why would you feed them such horrible food and then be surprised if there was a reaction? I understand your point about being guaranteed safe food as advertised, and this is how it should be, but some of these products I wouldn't give to my dog, never mind a child!

[SandyStPeteFL]

I am fairly new to being a "silly" but I have found that in the beginning here, I just buy only one or two new things each week. I continually read the labels. I have bought mostly gluten free products but then add a "regular" ketchup or mayo to my purchase. I printed out the list of safe and un-safe things and use it every time I shop.

[caek-is-a-lie]

I'm sure others would appreciate the warning on which type of seasoning this was, so that we can be cognizant of this concern. It doesn't have to say wheat to have gluten in it.

Oh sorry! It was Safeway brand Salt Free Garlic & Herb Seasoning. It made me very very sick so I know it has a lot of gluten in it. But it's not listed anywhere on the label.

[caek-is-a-lie]

I am fairly new to being a "silly" but I have found that in the beginning here, I just buy only one or two new things each week. I continually read the labels. I have bought mostly gluten free products but then add a "regular" ketchup or mayo to my purchase. I printed out the list of safe and un-safe things and use it every time I shop.

Yes I do this too. I also bring my BlackBerry to the store with me so I can Google things on the fly. I usually end up at this forum every time. lol It's been a huge help! I just enter "[name of brand or product] gluten" and let 'er rip! It's great.

[one more mile]

1) less is better when it comes to the amount of ingredients on a label

2) never be afraid to stand in a grocery store and call the number on the back of a new product to see if it is gluten free.

3) SLOWLY add new foods. Take two bites and wait to see if you get sick.

4) Your homemade is better than any other food you can get

5) eat at least two treats a week, other wise you I get board and feel deprived. My favorites are lemon bars I make and scallops.

6) Smile when you want to smack a well meaning person. Making someone happy is not worth half a day on the toilet.

7) Keep emergency food in your car or desk.

8) when in doubt leave it out.

9) have fun experimenting with new flours to make the things you miss.

10) Tapioca Flour holds baked items together. ( 1/2 cup as part of total flours) Coconut fiber absorbs when you added to much liquid. just mix about 2 tablespoons in.

11) Buy your own toaster and put it under a cabinet when not in use so someone does not accidentally use it.

12) Bragg liquid Aminos tastes like soy sauce. Find substitutions for what you enjoy.

13) Your taste buds will change some new gluten-free food that was gross a month ago may be fine now. The same for grapefruit.

14) It is ok to get mad and sad. Feel the anger and the loss, feel it all the way. but then move on to the gratitude of finely knowing how to feel well again!

but most important to me

15) When tempted, think the bite though. Yes it may taste good but how will it feel in 20 minutes?

I am looking forward to others tips!

one more mile

[Sammie Alma]

Sammie I am a newbie to all of this and I am still eating a gluten diet so I can get my biopys done. I go some "garlic and parsley" boy that stuff makes me so sick that I can't stand even the smell of it. It doesn't say anything about wheat or gluten Yes or No. but it does have a moditfyed corn starch in it. I am not sure what they have in that? I then took a pure garlic powder and add some Kosher salt and that is great.

But that can't be true. Because I ate some Safeway seasoning that made me super sick and it didn't say "wheat" on it, but it did have "spices" in it and when I called they said it contained gluten. You can't get away from the hidden gluten in labeling where it's used as a thickener or binding agent. They should be required to specifically cite "gluten" on labeling, not just "wheat". I don't think the rules are strict enough.

[MollyBeth]

A good idea is to learn to cook gluten free meals yourself, and start with a simple meal plan and expand your foods slowly as you learn.

I couldn't agree with this more. I just went gluten free back in October and When I first started I ate a lot of plane meats like chicken breasts. Also, I bought fresh veggies and fruits and cut them up myself and ate them plain. Pecans, Almonds and Walnuts were also big ones. I steared clear of dairy too. Only ate cheese once in a while. (Would have given it up completely but I love my cheese!)

Only recently have I started to venture out to try new things. I found that Thai kitchen products are my new favorite thing when I need to pack a quick lunch and when I can afford it, I love glutino products!!!

I also agree with the other posts about learning as much about food as you can in general. I now try to stay away from foods tha are full of chemicals. I think I'm eating the best I've ever eaten in my entire life!

One last thing that has helped me also is that I have kept a journal with notes about food products that are friendly to the gluten community...like Kraft.

[dandelionmom]

Keep food with you is one of our most important rules.

Have a small supply of easy to prepare, shelf stable emergency food just in case of bad weather or other emergencies.