Hidden Gluten

[jjc]

I am new to this board, my daughter is the affected one and I am having a trial and error period where we figure out what is ok for her to eat. She was doing good for about a week, and then 2 days ago ate Rice Chex with Rice Dream and also some dry roasted peanuts later on. She was really sick that afternoon and I have to blame it on one of those. Now I know that the dry roasted peanuts could have been to blame (even though she ate only 3 nuts???!!!) or possibly the cereal and the Rice Dream - but how can you know if a product is ok when it says gluten free? Is it a labeling issue that allows a trace amount of gluten but they can still use that "label"?

[Piccolo]

jjc

Welcome!

With Rice Chex it has to be the new box that reads gluten free. If it doesn't she got gluten. As for Rice Dream it contains gluten. The package used to say contains .002 ppm barley. So they have changed the package but not the formula. I would buy other rice, almond, hazelnut etc. milk. Pacific is a good brand.

Susan

[Gluten-Free Guy]

Hidden gluten is a real problem. Even though federal labeling law requires identification of wheat or its derivatives, barley and rye need not be identified as allergens. Rye generally is not a hidden problem. Barley is a problem because its derivatives are used frequently as flavorings (malt) and as colorings, etc.

Up to this time, there has been no federal standard to define the term "gluten-free," so manufacturers have been on their own. Beginning in August 2008, the FDA will issue a standard definition that manufacturers must follow if they choose to label their products "gluten-free." Once the definition is published, major food manufacturers will probably start placing the words "gluten-free" on their products. General Mills recently placed that term on Rice Chex (but watch the boxes, some old ones containing gluten may still be on store shelves). General Mills discontinued malt flavoring from barley and began using molasses.

Another thing to watch is that manufacturers change product formulations. A product that is gluten-free today may not be tomorrow. For that reason, you should always check the labels each time you purchase. If you can't tell from reading a label, it's a good idea to call the manufacturer to verify that a product is gluten-free.

As one who is new to the gluten-free diet and lifestyle, you will find the "CSA Gluten-Free Product Listing" one of the most useful references available. It lists gluten-free foods and other products and it has a glossary of terms to watch for on product labels. You can purchase the book at www.csaceliacs.org for $30. It's published by the

Celiac Sprue Association which has several support group chapters across the U.S. While this book is one of the best resources available, it is not fool proof. For example, it may list a product as gluten-free, but after publication, the manufacturer may have changed the formulation to one that contains gluten (this does not happen often, but it does happen). The book is updated periodically.

Dry roasted peanuts frequently, if not always, contain gluten. You stated that your daughter ate only two or three. For many people, a trace is enough to trigger a reaction. Most celiacs consider the equivalent of one bread crumb enough to cause a reaction. For example, if a restaurant serves a salad with croutons, ask them to make a new salad rather than remove the croutons, because a crumb may remain on the salad.

Cross contamination is also a concern. Utensils, pots and pans, cooking surfaces, etc., may harbor crumbs or other traces of gluten. For example, you need a separate toaster that is dedicated only to gluten-free. If you dip a knife into peanut butter or jelly and spread it on bread, the knife is contaminated and must not be placed back into the jar. A fork used to stir wheat-based spaghetti must not be placed in a pot containing gluten-free spaghetti (by the way, Tinkyada brand rice pastas are the closest in flavor and texture to wheat-based pastas).

Some lipsticks contain gluten, so be careful about kissing or leaving a smear on the edge of a glass that your daughter will drink from after you.

Until your daugher is 100% gluten-free and remains so for the rest of her life. she will probably continue to have reactions or show very slow progress, if any, in healing. Some celiacs don't have the overt symptoms (diarrhea, gas, pain, hair loss, etc.) and feel they can cheat by consuming small or occasional amounts of gluten. That's dangerous, because as long as the body is exposed to gluten, the body is being damaged on the inside. In the extreme, continued exposure to gluten can lead to intestinal cancer.

I know it's overwhelming now trying to figure all this out. But believe me, it does get easier once you learn what to look for on probuct labels and which brands are OK. Eating out is the most risky, but some restaurants are beginning to learn about gluten-free. One never knows, however, how informed they really are, especially about cross-contamination.

[RiceGuy]

Some brands of peanuts are coated with all sorts of things, even for unflavored varieties. Many have MSG among other things, so always check the labels of course. I only get the ones which are just peanuts and salt, which I have only seen in the cardboard "tins". These are usually labeled as "cocktail peanuts", "party peanuts", etc. But peanut allergies are common too, so I wouldn't rule that out. Also mold allergies might be involved, given the propensity for peanuts to have mold.

[irish daveyboy]

Hidden Gluten can appear in places you wouldn't normally consider!

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Scrambled Eggs in Restaurants and Hotels can have flour added to them to make them 'Lite and fluffy'

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Open Original Shared Link

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Steaks can be seasoned before cooking with a seasoning containing Wheat.

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Open Original Shared Link

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Watch out for Egg Free Sauces.

Open Original Shared Link

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Best Regards,

David

[Aleshia]

I thought rice dream wasn't gluten free? I thought it was just the other brands of rice milk and that they use wheat in processing rice dream???

[Gluten-Free Guy]

I am new to this board, my daughter is the affected one and I am having a trial and error period where we figure out what is ok for her to eat. She was doing good for about a week, and then 2 days ago ate Rice Chex with Rice Dream and also some dry roasted peanuts later on. She was really sick that afternoon and I have to blame it on one of those. Now I know that the dry roasted peanuts could have been to blame (even though she ate only 3 nuts???!!!) or possibly the cereal and the Rice Dream - but how can you know if a product is ok when it says gluten free? Is it a labeling issue that allows a trace amount of gluten but they can still use that "label"?

I checked the Rice Dream website and it appears that most of the products ARE gluten-free. You may wish to check for yourself and, by all means, read the package label. Here's the website: Open Original Shared Link

In my earlier post, I forgot to mention that you must also verify the gluten-free status of prescription and over-the-counter medications. Call the manufacturer to be sure. You can also go to the website www.glutenfreedrugs.com.

[MaryJones2]

Rice Dream uses a barley protein in their processing and until very recently their label disclosed this. The barley note has recently been removed and replaced with gluten-free because the final product tests out at less than 20ppm but the formulation has not changed. Many celiacs react to Rice Dream, myself included, and many of us don't really consider Rice Dream gluten-free even though it is labeled as such. I highly suspect the Rice Dream is what made your daughter ill. jjc, I would stick to one of the other brands. Best of luck to you and your daughter! You've found a great support group here.

[Gluten-Free Guy]

Rice Dream uses a barley protein in their processing and until very recently their label disclosed this. The barley note has recently been removed and replaced with gluten-free because the final product tests out at less than 20ppm but the formulation has not changed. Many celiacs react to Rice Dream, myself included, and many of us don't really consider Rice Dream gluten-free even though it is labeled as such. I highly suspect the Rice Dream is what made your daughter ill. jjc, I would stick to one of the other brands. Best of luck to you and your daughter! You've found a great support group here.

Point well taken. I don't use Rice Dream and you do, so I defer to your knowledge.

This brings up an issue that bothers me and, probably, most other celiacs. The rumor is that the FDA's August 2008 definition of "gluten-free" will allow up to 20ppm. If, during one day, we eat 4 or 5 things each containing 20ppm, will we react? I hope we get some kind of guidance on how to determine the amount of exposure we get at the 20ppm level. If you react to 20ppm in Rice Dream, then one might assume that many of us will react to many products labeled gluten-free. Even scarier, if we are exposed at the 20ppm level and don't react, we may still be harming our bodies. Another question: Will we know how many ppms a product contains? Not likely. I'm afraid this may be another example of a government regulatory agency caving in to the manufacturers' lobby rather than doing the right thing and specifying zero gluten as the definition.

[Juliebove]

Riuce Dream is not gluten free. Makes my daughter very ill.