Gluten-Free Guy

I'm not a doctor and every person reacts differently to gluten, but I'll try to answer your questions.

It is possible to have the gene but not the intolerance. No one knows what causes a formerly tolerant person to become intolerant. The change can happen at any age. I belong to a large celiac support group and at our monthly meetings we have newly-diagnosed celiacs ranging from under age 1 to age 80.

How to differentiate who needs to avoid gluten and who doesn't: First, if one reacts to gluten, the person must immediately get on a 100% gluten-free diet and remain on it for the rest of his/her life. You never outgrow it.

If one has no immediate overt reaction (gas, diarrhea, pain, etc.), one can have less obvious reactions such as anemia. The only way to be sure you do or do not have celiac disease is to have the biopsy. However, if you clearly feel bad when you consume gluten and clearly feel good when you don't, it's a pretty good indication that you have the disease.

You say the last few days you have felt so-so even though you have been careful to avoid gluten. I'm not challenging your statement that you have been careful to avoid gluten, but there is a possibility that you are so new to this situation that you don't realize all the sources of hidden gluten or the opportunities for cross contamination. I know from my personal experience that for the first few weeks after being diagnosed, I made several mistakes and accidentally consumed gluten. For example, some headache medications are gluten-free and some are not. If you use a toaster that also toasts wheat bread, you may have cross contamination from crumbs. Most celiac families have two toasters, one for gluten-free and one for wheat breads.

While federal law requires listing wheat on product labels as one of the 8 major allergens, it does not require listing barley which is just a bad as wheat. Barley derivatives, such as malt and malt flavoring, appear in many foods. Flavoring from barley can occur, especially in meats, and it doesn't have to appear on product labels.

My point is (1) that you have to check the ingredient list of everything that goes into your mouth, so if you can't tell from reading a product label, you need to call the manufaturer and (2) you must take very careful measures to avoid cross contamination (clean utensils, cooking surfaces, etc.).

Another matter is the risk of eating out, whether at a restaurant, someone's home, a school, an office snack day, etc. If you can't be absolutely sure the food you put in your mouth is gluten-free, don't put it in your mouth. Many celiacs, including me, carry our own food with us to other homes, office snack days, etc. I've even carried cheese and hard boiled eggs to restaurants while the rest of my family enjoys the dining out. Fortunately, we have discovered five or six local restaurants that can serve gluten-free food. For example, Outback has a gluten-free menu (you can find it at their website). Even so, there can still be a risk of cross contamination in the kitchen, but so far, I've never had a problem at Outback.

Viruses do not cause gluten intolerance. There is no treatment or pill for gluten-intolerance. The only option is never to consume even a trace of gluten for the rest of your life. I know that sounds tough, but I also know that, as you study and learn more about the disease, you will find adjustment much easier. In fact, I tell people that, if you're going to have something go wrong with your body, choose celiac disease. It's much better than cancer, diabetes, heart disease, arthritis, etc., because it's so easy to control: just don't eat gluten.

There are many good gluten-free recipes and gluten-free products on the market. Availability gets better every day, because food manufacturers' are learning that this is a profitable new market that won't go away like the fad diets, such as the Adkins Diet.

I guarantee that your life will get better. It's just a matter of doing your research. I admit that it's inconvenient and frustrating, but as you learn which products are safe, it will be a lot easier. Many name brands have gluten-free items, so you don't have to buy all specialty foods. I really recommend the CSA Gluten-Free Product Listing that I mentioned in my earlier posting.

I know it's difficult to make such a complete and permanent change in your eating lifestyle, but the worst thing you can do is cheat and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available.

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).

One other bit of info for you. You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com.

Another thing to remember is that food and medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

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 product labels and which brands are OK. You will find several gluten-free mixes and frozen foods that are good, usually in natural food or health food stores, but they tend to be expensive. Many conventional foods in coventional grocery stores are gluten-free such as SOME Progresso soups, Oscar Mayer lunch meats, Ball Park hot dogs, and many more. Whole Foods, Wild Oats, and Hy-Vee stores carry a wide selection of gluten-free foods.

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.

If there is a celiac support group in your area, you will find several knowledgeable, experienced celiacs who will be happy to answer your questions, share recipes, suggest safe restaurants, etc.

Good luck. It will take some time and a learning curve, but you will do fine sooner than you think.

First, let me say "It will get better." When I was first diagnosed 7 years ago, I was overwhelmed, but now it's pretty easy for me to be gluten-free. The riskiest thing is eating out, not only at restaurants, but also at people's homes, school cafeterias, etc.

You say you eat yogurt. Most Yoplait flavors are safe (and probably some other brands), but some brands or flavors within a brand contain gluten, so read labels. I believe Dannon products often contain gluten.

At your health food or specialty stores, you can find Glutino brand frozen pizzas, breads, bagels, donuts, muffins, etc., that are gluten-free. Toast the breads, hamburger buns, hotdog buns, etc. for better flavor and texture. There are few other brands of breads that I have been as satisfied with.

You can find many gluten-free cereals and other products at health food and specialty stores. Watch for labels that indicate "gluten-free." General Mills Rice Chex are gluten-free, but watch for the label on the front of the box (there may still be an older box on the grocer's shelf that is NOT gluten-free). Tinkyada brand rice pastas (spaghetti, etc) have the best flavor and cook most nearly like wheat pastas. I'm sure you know that "wheat-free" is not necessarily gluten-free, because a product may contain barley or its derivatives, rye, or contaminated oats without containing wheat.

Always read product labels each time you buy, because manufacturers sometimes change formulations so that a product that is gluten-free today may not be gluten-free tomorrow. Also, in any given brand name, there will likely be varieties or flavors that are gluten-free and some that are NOT gluten-free. Federal law requires listing wheat or wheat derivatives on labels, so that is easy to spot. Barley is trickier, but if you see the words "malt or malt flavoring," it often comes from barley. However, there is a corn malt that is safe.

When I last checked, the following were gluten-free, but you should read the labels to be sure: Dinty Moore beef stew, Hormel corn tamales, Hormel Vienna sausages, some Hormel and Oscar Mayer sandwich meats (some Hormel packages indicate "gluten free"), Kraft cheeses (except blue cheeses), Lay's Classic potato chips, Fritos Original, Cheetos Original, Tostitos corn chips, Hormel chili with beans (but NOT the chili without beans), Ball Park hot dogs, French's Classic Mustard, Heinz regular flavor ketchup, Kraft Real Mayonnaise, most jams and jellies, Smucker's Natural peanut butter, Vlasic pickles and pickle relish, McCormick Sloppy Joe mix (but some other brands contain gluten), Minute Maid orange juice and lemonade, most soda pop brands, Hershey plain and almond candy bars (but not the crunchy varieties), Butterfinger, Snickers, Edy's Grand Ice Cream (but not the obvious flavors such as Cookies and Cream), most canned and frozen fruits and vegetables (but some frozen French fries are dusted with flour to avoid sticking), some Progresso canned soups, Planter's nuts (but dry roasted usually contains gluten), Orville Redenbacher and Act II microwave popcorn, Mission brand corn tortillas in the red box (it indicates "gluten-free" on the label), Old El Paso refried beans, Old El Paso Cheesy Mexican Rice, most canned tuna. There are a lot more, but this list will get you started.

I suggest that you order the "CSA Gluten-Free Product Listing," a book that lists hundreds of gluten-free products and the terms to watch for in product labels. In my opinion, it's the most useful reference a celiac can own. It's $30 at www.csaceliacs.org and is published by the Celiac Sprue Association. It's a big help, but it's not fool proof, because a manufacturer may change a formulation so that a food listed in the book as safe may no longer be safe. The book is updated periodically. Again, it's important to read labels.

Also, check every prescription and non-prescription medication you buy. The binders, excipients, flavorings, colorings, etc., can contain gluten. The website www.glutenfreedrugs.com is a great help, but it has some omissions and can get out-of-date when a manufacturer changes a formulation.

For any food or medication, if you aren't sure about the gluten-free status, call the manufacturer. I've heard that manufacturers receive more calls about gluten than any other topic. Many companies' websites will list gluten-free products under tabs for nutrition, health, etc.

One more thing: Never, never cheat and consume gluten. Continued consumption, even on an infrequent or small scale, can lead to several serious health problems, the most serious being intestinal cancer (although I don't think it occurs often).

Good luck. Once you learn which products are safe and what terms to watch for in labels, it will get much, much easier. Believe me, in a few months, your gluten-free life will get much better.

Every person is different, but as far as I know, the only solution to being glutened is to wait it out. Let it work its way out of your system. The length of time varies per person.

You must always be careful about what you consume. Cross contamination is 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).

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

One other bit of info for you. You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com (although it is not always up-to-date).

Another thing to remember is that food and medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

The worst thing you can do is cheat (on purpose or accidentally) and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

You are right when you say it will take a while to get the hang of being gluten-free, but you can do it. It does require doing your research and paying attention to everything you put into your mouth. Once you figure out what is safe and what isn't, it gets a lot easier.

You asked about potential damage. Gluten, even in trace amounts, causes internal damage. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never consume gluten in any amount: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population."

You're in a tough spot, since your medication is new. As the others have already said, you may have to consider contacting a pharmacy that can custom-make your prescription.

Have you confirmed with the manufacturer that your drug does indeed contain gluten, or do you only suspect that it does? Without confirmation, it may be that something other than the drug is causing your problem. Hidden gluten and cross contamination are always big suspects. If you eat out, that creates considerable risk.

I have been on a gluten-free diet for over six years and have been very careful to avoid accidental glutening. I've only been glutened two or three times.

Regarding the pain, before I was diagnosed, the pain was so bad that I often could not eat for 24 hours or longer. I even had trouble drinking water because it made the pain worse. I'd get over the pain, eat something wrong, and go through the whole thing again. I was getting so skinny I looked like the men in the Holocaust photos. I would sometimes double over in pain and often could not sit back in a chair, but had to remain standing or sitting upright. This went on for close to a year before the doctor finally diagnosed me. (Pain wasn't my only symptom--I saw list of symptoms one time and I had had 18 out of the total list. Things such as diarrhea, hair loss, pitting of the teeth, osteoporosis, inflamed gums, mild dermatitis herpetiformis, hypoglycemia, cracks in the corners of my mouth, bone and joint pain, etc.)

You mentioned eating at a restaurant. Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

For your first six months or longer, you need to consider letting your body heal. You may want to consider eating only what you prepare until you are better informed about safe and unsafe foods and products and how to ask the right questions.

If your problem is only gluten, waiting it out is the only solution to the pain. However, as others have suggested in their posts, it might be good to rule out other problems. Going to your doctor will be less expensive than the emergency room.

I can understand your frustration. It does get tiresome.

I see several comments about food, but another source of gluten is prescription and over-the-counter medications. Making it even more frustrating is the fact that manufacturers can change formulations or suppliers and an item (medicine or food) that is gluten-free today may not be tomorrow. You always need to read labels or call manufacturers.

With regard to medications, you need to call the manufacturers or visit www.glutenfreedrugs.com. But each time you get a refill, you need to check again.

I've had reactions that I thought were food-related only to find out that they were caused by medications containing gluten in the form of binders, coatings, flavorings, colorings, etc.

I'm sure you know that eating out is the riskiest thing a celiac can do. Not only restaurants, but also at the homes of family and friends, schools, treats at work, etc. You have to read labels and ask questions. I usually take my own food, heat it in the microwave, and enjoy socializing. I have found a handful of local restaurants that I can trust, including three that serve pizza. Finding them has made life a lot easier. The good news is that chefs and food manufacturers are getting the idea that the gluten-free market is growing and one to accommodate. I think we'll see a lot more availability in the next year or two.

In your posting, you mention cheating by eating the chocolate chip muffin. You should never, never, never cheat. Here's a paragraph I found on a medical website regarding gluten cheating: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

There are many good gluten-free recipes for anything you desire. I've found several that are so good you can't tell they are gluten-free.

I wish you well. I know it's not easy, but I also know you can be successful.

As the others mentioned above, you may have other allergies along iwth the celiac disease. Another problem may be hidden gluten in medications, cross-contamination, dining out, etc.

Cross contamination: 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).

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com. I have had to change medications twice to find versions without gluten.

Another thing to remember is that food and medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

The worst thing you can do is cheat and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

Learning to live a gluten-free lifestyle is overwhelming at first, but once you learn what is safe and what isn't, life gets much better. After six years, it just seems pretty normal to me except for eating out at restaurants or someone's home. Then I am very aware of how careful I must be.

There is good news! Food manufacturers and chefs are becoming more aware of gluten-free, so it's getting easier to find safe foods. Even so, cross-contamination at restaurants continues to be a concern.

I suspect the caterer or the hotel chef can take care of you, although cross-contamination could be a concern, depending on how knowledgeable they are about gluten-free.

A light-weight, very portable backup food is Quaker Instant Grits (check the label to be sure they are still gluten-free). All you need is a bowl or cup of hot water which the server can get for you. Carry a little brown sugar and, if you wish, some raisins or dried cranberries to add to the grits. Since grits are ground corn, they have staying power and don't digest so fast you get hungry quickly.

The worst thing you can do is cheat and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

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).

Glutino brand frozen pizzas are very good, esp if you add your own toppings. I don't know where you live, but in the Kansas City area, there are at least three restaurants that make gluten-free pizza. Kinnikinnick makes the best bread, bagels, English muffins, hamburger and hotdog buns (all in the freezer section). They are enhanced if you toast them before adding toppings or meat. After you have cooked meat in a skillet, toast the bread or bun in the skillet--it soaks up the grease flavoring. Kinnikinnick Bread and Bun mix makes very good dinner rolls, etc.

On Amazon, you can order "Gluten-Free Baking Classics" by Annalise Roberts--she has the best recipes I've found for pizza dough, cakes, etc. Her lemon cake is so good my non-celiac granddaughter requests it for her birthday. If you don't tell, no one will know it's gluten-free.

I don't see that anyone mentioned two other sources of gluten. As you probably already know, eating out is the most risky thing a celiac can do, whether at a restaurant, the home of family or friends, school, church potlucks, treat days at work, etc. Some restaurants are learning to handle gluten-free. At www.triumphdining.com, you can order "The Essential Gluten-Free Restaurant Guide." It lists gluten-free restaurants by city and state. Often, by talking to the chef, you can find a local restaurant that has or can prepare a gluten-free food for you, but one always worries about how well they understand cross-contamination back in the kitchen With regard to other people's homes, etc., I just take my own food, heat it in the microwave, and enjoy the socializing.

The other source of hidden gluten is prescription and over-the-counter medications. Even when you find one that is gluten-free, manufacturers occasionally change their formulations, so an item that is gluten-free today may not be gluten-free tomorrow. Always check each time you purchase. Call the manufacturer or visit www.glutenfreedrugs.com.

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.

Good luck. I wish you well. Once you get this figured out, your life will be much better. The important thing is to always be 100% gluten-free.

I presume you are diagnosed with celiac sprue. While rice is a good product for most celiacs, it may not be for all. I know a diagnosed celiac who has allergic reactions (though not severe) to rice and she avoids consuming it as much as possible. She will, on rare occasions, consume a small quanitity such as in a muffin made from a flour mix containing a combination of various gluten-free flours, one of which is rice.

You may want to do some research into the independent (not the manufacturer's) scientific and medical validations to confirm the safety and effectiveness of any enzyme product claiming to assist celiacs in the digestion of gluten. At the national conference of the Celiac Sprue Association in October 2007, an expert expressed his opinion that one of these enzyme products is "deceiving and potentially dangerous." It's likely that the same caution applies to the other similar products.

Currently, scientists at Stanford University and at the University of Leiden in the Netherlands are conducting research to find a pill that will assist celiacs in the digestion of gluten, primarily when consumed by accident. It appears, however, that it may be a few years before a safe and effective product (based on their research) will reach the marketplace.

I have not seen any endorsements for the current products by national celiac organizations. It seems that, if the products were safe and effective, the organizations would be communicating it to their members. Furthermore, if you read the product labels, you will probably see a sentence to the effect that "These statements have not been evaluated by the Food and Drug Administration."

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.

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).

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

For your first six months or longer, you need to consider letting your body heal. You may want to consider eating only what you prepare until you are better informed about safe and unsafe foods and products and how to ask the right questions.

One other bit of info for you. You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com.

Another thing to remember is that medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

The worst thing you can do is cheat and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

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 product labels and which brands are OK. You will find several gluten-free mixes and frozen foods that are good, usually in natural food or health food stores, but they tend to be expensive. Many conventional foods in conventional grocery stores are gluten-free such as SOME Progresso soups, Oscar Mayer lunch meats, Ball Park hot dogs, and many more (always read the ingredient labels before buying). Whole Foods, Wild Oats, and Hy-Vee stores carry a wide selection of gluten-free foods.

Join a celiac support group. I did and it made life a whole lot easier. The members are experienced and knowledgeable and can answer any question you have. Here's a website that lists groups in Michigan:

Open Original Shared Link

I guarantee your life will get better. I tell people that, if something is going to go wrong with your body, choose celiac disease. It's a lot better than cancer, diabetes, heart trouble, etc.

I'm glad you were able to express your concerns to the group of friendly celiacs in this forum. There are many fine, supportive, knowledgeable people here.

I don't know where you live, but I would suggest joining a celiac support group located in your area. I have belonged to one for six years and it has made life much, much easier. If you don't have a support group in your area, you might consider starting one. Contact the Celiac Sprue Association for information (877-272-4272).

If you do your own cooking, it will be easier. There are many delicious gluten-free recipes from scratch and, thank goodness, the availability of good packaged mixes and frozen gluten-free foods is improving all the time. It's much better than when I was diagnosed six years ago. I'm sorry, but I'm only gluten-intolerant, so I can't address egg-free and dairy-free, but some of the products on the market accommodate intolerances to gluten, eggs, and dairy. Gluten-Free Essentials products accommodate all three intolerances (Open Original Shared Link) and, in my opinion, many of their products are good. There are also cookbooks that offer recipes addressing combined intolerances to gluten, eggs, and dairy.

You should be able to find acceptably tasty subsitutes for the same glutened foods you crave and cheat with.

It is very important that you stop cheating. Even if you don't always have an overt reaction to gluten you ingest, you are damaging your body internally. I don't remember where I found the following paragraph, but it conveys an important message: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population."

You asked, Is there any way I can cure the damages by sticking to the diet? In my opinion, you will see remarkable improvement in a week or two as long as you are 100% gluten-free. From my reading, much of the damage celiacs experience can heal once the person remains 100% gluten-free. The key here is: 100%. That means you can never, never, never cheat.

People who monitor this say that the average time a celiac suffers before being diagnosed is 10 years, so your 4.5 years of cheating may not be a problelm. People heal once they're diagnosed. Also, the younger one is, the sooner one heals, so your age is very much in your favor.

You can take control. You can do it! We're all on your side.

As stated by curlyfries, everyone is different. It is likely that you will react each time you are exposed to gluten. I've been on the gluten-free diet for six years and have been mostly successful at being 100% gluten-free. I think I was glutened only twice in the past six years and I reacted very painfully both times.

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

For your first six months or longer, you need to consider letting your body heal. You may want to consider eating only what you prepare until you are better informed about safe and unsafe foods and products and how to ask the right questions. I still take my own food to parties and the homes of relatives and friends, even Thanksgiving Dinner. (I am one of the world's luckiest men. My wife actually prepares a gluten-free Thanksgiving meal for me to take. All I have to do is heat it in the microwave and I enjoy the same holiday food everyone else is having.)

It's important to be 100% gluten-free for the rest of your life. Continued exposure, even without symptoms, damages internal organs and, in the rare extreme, can lead to intestinal cancer.

One other bit of info for you. You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com.

Another thing to remember is that food and medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

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.

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).

Good luck. It's overwhelming at first, but once you learn the safe products, it gets a lot easier. Celiac disease is a lot better than diabetes, cancer, heart trouble, and most other ailments.

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.

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.

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.

We also stay where we can have a kitchen wherever we travel. It's a great help for breakfast and the evening meal, esp if you don't mind cooking. Upon arrival at our lodging, our first mission is to the grocery store.

For lunch while sightseeing, attending amusement parks, etc, I carry a soft-side lunch cooler with a blue ice pack. I include cheese, boiled eggs, fresh veggie spears and a gluten-free dip, Vienna sausages, chips, cookies, candy bars. Another option that works well for me is to carry a gluten-free sliced lunchmeat (Oscar Mayer, etc.) and a bread-and-butter pickle spear (Vlasic) to supplement the cheese, boiled eggs, etc. gluten-free crackers (Glutino) are good with these foods. Carrying the lunch cooler is an inconvenience, but it beats an option such as rice cakes with peanut butter. I carry it with me all day so that, when my wife finds a place to buy lunch, I have mine handy. Sometimes, she just eats the same thing I eat which often is less expensive and better than some of the fare one finds in touristy areas.

Another resource in the Celiac Sprue Association at www.csaceliacs.org with support group chapters all over the U.S.

I belong to a long-established support group with 500 members. About 50-60 usually come to the monthly meetings, but we have about 125 at our Thanksgiving Potluck. For montly meetings, members make gluten-free foods and snacks at home and bring copies of recipes to share. Other members buy gluten-free foods to bring. It's all voluntary, however. We sometimes seek samples from manufacturers and we have local bakeries, etc., who ask to come to meetings to demonstrate their gluten-free wares.

At each meeting, there is some kind of program of interest to celiacs. At the end of the meeting, newly-diagnosed members are invited to stay and meet with experienced, well-informed members for answers to questions and help in getting into the diet and the lifestyle.

We suggest donations, but do not charge membership dues. We have a quarterly newsletter that is quite informative and is mailed or emailed to our 500 members. Membership grows every month because people are being diagnosed more frequently than in the past.

While getting started, publicity will be your biggest issue. Your newspaper article is a good start. However, we have found the most effective method to be through doctors, gastroenterologists, dermatologists, etc. We provide an information card for the physicians to give to newly-diagnosed patients. It works well.

We also have a help-line that newly-diagnosed people can call for information to get started on the gluten-free diet and lifestyle. One of our very knowledgeable members answers the calls at her home.

It would be good to establish your group through one of the national celiac organizations rather than strike out as an independent.

I'm 32 and for about 6-7 years now, I have just felt that something is going on with my body and have had some vague symptoms including difficulty breathing for no reason and especially in the last 6-8 months, recurrent mouth ulcers, a very itchy skin rash, moody/irritable and thinning hair. I am also crazy thin and snack constantly but get hungry an hour later. I really don't have the GI symptoms like diarrhea, bloating, gas but have suffered from constipation regularly. Also, I started to have regular bone pain in my hip and knee. I want to ask my doctor to order the test for celiac disease, but I know she is going to look at me like I am looney and label me with the crazy stamp.

After the birth of my second child 8 months ago, I had this unexpected situation occur where my blood pressure sky rocketed for no reason and it was not due to any issues of being pregnant and still fluctuates greatly. All tests came back normal. Looking back now and knowing how this disease can disrupt endocrine function I'm thinking maybe I have this disease and this is what is causing all of these non-specific, drawn out over time symptoms.

I am seeing an alternative medicine doctor for the bp issue now since conventional medicine just wants to give me a pill and not figure out what is really going on. I just completed a GI panel where they test for gluten and other allergens so maybe this will finally be my answer.

Anybody have an opinion?

Has anyone else seen their symptoms appear after pregnancy?

I'm not a doctor, but the symptoms you describe in your first paragraph are the same as those I had about a year or two before being diagnosed with celiac disease (7 years ago). In addition, I had pitting of the teeth and very brittle finger nails and toe nails. In my opinion, you sound like a good candidate for celiac disease. If you have it, ask for a bone density test--you may have developed osteoporosis because of malabsorption of calcium.

If you are celiac, it's not the end of the world. I tell people that, if they are going to have something go wrong with their bodies, choose celiac. It's a lot better that diabetes, cancer, heart trouble, etc. It will take a few months to get acquainted with which foods and medicines are gluten-free, but once you figure it out, it's not that bad. The good news is that the availability of gluten-free foods is growing by leaps and bounds. In fact, the Food and Drug Administration will publish a standard definition of the term "gluten-free" in August and, most likely, many of the major food manufacturers will start adding those words to package labels. Many already do. There are also many good gluten-free cookbooks. Attending a support group is the best way to get good information and assistance. Many doctors and dietitians are not as infomed as one would prefer, but the members of the support groups will be able to give you good, informed guidance.

Hello,

Is there any good canned cream of chicken, cream of mushroom, or tomato soup out there?? I use them all the time when I do cook.

Thaniks!

Progresso has several good gluten-free soups. By far the best tomato soup is Pacific Natural Foods Organic Roasted Red Pepper and Tomato Soup which we buy at Costco. It even states "Gluten-Free" on the carton. Even if I were not a celiac, my wife and I would still find this to be the best tomato soup on the market. If you don't have a Costco in your area, the soup can be ordered from Amazon (12-pack of 16-oz containers for $28).

I am looking for a group that i can go to but also bring my son along. My husband works evenings and i take him every where. Neither one of us has been told that we have Celiacs yet. Our 4 year old is getting ready to have the scope done on the 20th. But after talking with his doc and us we sitting down and talking we are still going off of gluten and i think i am going to need some support. Anyways hope someone can help. thanks

A support group for the Kansas City area meets on the second Sunday of each month at 2:00 p.m. at the Community Center of St. Joseph's Medical Center at I-435 and State Line. This is a very active group with a lot of knowledgable, experienced members who will welcome you and answer any question you have.

A word of caution: You should not go off gluten until your doctor has had a chance to conduct the tests. Going off gluten will cause the test results to be invalid.