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TRB

Just Diagnosed - Mi

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I have just been diagnosed with Celiac disease. I'm 29 and live in metro-Detroit. My doctors ran me through everything fast - had a Gastro consultation on Monday and the scopes on Wednesday. After the scopes my doctor said he wanted me to start a gluten-free diet immediately. Then he left ... where the hell do I start? There is so much information out there I'm feeling a little overwhelmed. Not to mention I'm not used to thinking about food choices at all, I'm a grab it and go type of gal.

I know the major things to stay away from but all the hidden gluten is worrying me. How badly can being exposed to trace amount of gluten really hurt me? Sites are talking about contamination from using toasters that have been used with gluten breads - can this really cause me problems?

And must importantly of all what kind of beer can I drink???

On the plus side I will have to start eating better and will probably be healthy then I ever have before. I just have to keep positive and take it one meal at a time. Any advice on where to go from here would be greatly appreciated. If anyone is from Michigan I'd love to know of any restaurants in the area. Sadly one restaurant that specialized in gluten-free closed last year.

Thanks

Tanya

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Welcome to our world Tanya!

I certainly understand how you feel. An unfamiliar gastro doctor diagnosed me and let the door hit me in the butt on the way out. I found myself here and never left.

A great first read is Dr. Peter Green's "Celiac Disease: A Hidden Epidemic".

For the time being eat simply with meats, seafood, rice, potatoes, fresh veggies and fruit. Go diary light or eliminate it altogether for the time being. Dairy can be added easily when healing has begun.

Healing can take days to several months and a total gluten free lifestyle is a must. It will, without doubt, be a lifestyle change. Soon it will become second nature and after some time, you will live a life without deprivation, and without issues. A good thing to look forward to.

A shared toaster is not recommended. A new one will cost under $10.00.

Gluten can hide in many ways. Shampoos, lipsticks, lotions, meds, vitamins or anything that can get in or near your mouth. Please review these.

The key to the success on the gluten free diet is to learn to read labels. To ease that task for you, here is a listing of companies who will clearly list all forms of gluten in their labeling. If you do not see wheat, barley, malt or rye on the label, it just isn't in there and safe to consume.

http://www.glutenfreeindy.com/foodlists/in...donothidegluten

And the best advise that I can share with you is to read, read, read from this site. It's the best around.

Good luck and feel free to ask anything.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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There is, in fact a "complete Idiots Guide to Gluten Free eating" . You can get it on Amazon, or other places where they sell the idiot guide books.

As for beer, you probably won't find any in a bar, sadly. Red Bridge is gluten-free, as is Green's Beer (Belgian, and excellent). There are others, but those are the only two I like, so I don't remember the names.

Yes, definitely hang out around here :) Everyone is friendly and wants to help.


Positive Bloodwork 7/8/05

Inconclusive Biopsy 7/20/05

gluten-free since 7/23/05

Never felt better.

"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

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I like the Idiots Guide book a lot too. It was the first gluten-free book I read and I refer to it often. If you want gluten-free beer in a bar, go to Amicis in Berkley. They have Redbridge. They also have a gluten-free pizza but I got sick when I ate it so they must not be as careful with cc as I asked them to be. It was delicious though!

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.......about the beer.......

If you like a richer, somewhat darker, amber style beer, try Dragon's Gold. A really nice summertime, crisp, refreshing beer is New Grist. I believe that one won some blue ribbons, even beating out traditional brews.

I find Redbridge OK, but it is the only Gluten-free one I can find locally.

I have a friend in North Carolina (closest distributor to New Orleans!) who brings me a case of Dragon's Gold whenever we see each other. We used to be Guinness drinking buddies and this is the closest I've found, although it is not nearly as bitter, creamy or chocolaty.


"...I tried to explain to the waiter that I could not have anything with flour so he took the flower off the table..."

Live your life each day

greet the tides my friend

we're all nomads; forever on our way

a journey to the end.

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I tried to edit my reply with some more info but it wouldn't let me, so here goes:

For good restaurants, I've had good luck with PF Changs in Somerset, several area Outbacks, and Sweet Lorraines. They all have gluten-free menus and the wait staff was good with my explanation of cross contamination.

The best grocery store I've found is Holiday Market (they carry a couple of kinds of gluten-free beer too). Kroger and Whole Foods are also good.

There's a good bakery too called Celiac Specialties.

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.......about the beer.......

If you like a richer, somewhat darker, amber style beer, try Dragon's Gold. A really nice summertime, crisp, refreshing beer is New Grist. I believe that one won some blue ribbons, even beating out traditional brews.

I find Redbridge OK, but it is the only Gluten-free one I can find locally.

I have a friend in North Carolina (closest distributor to New Orleans!) who brings me a case of Dragon's Gold whenever we see each other. We used to be Guinness drinking buddies and this is the closest I've found, although it is not nearly as bitter, creamy or chocolaty.

I love Guinness so I will have to check out Dragon's Gold. I did some research and it looks like I can actually get it in Michigan too. At least I'll be able to have some good beer.

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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:

http://www.csaceliacs.org/chapters2.php

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.

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