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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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catsmeow

Indulge Me; What Was It Like To Be Gluten Free Back Then?

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I was curious to hear your experiences of being gluten free prior to the explosion of gluten-free products. I arrived on the scene post explosion, and even though the transition was hard, I am positive that is wasn't even close to being as difficult as it was back then. My symptoms started in 1999, and reached full blown illness by 2002, but of course, it took till 2010 to get properly diagnosed. I ponder what it would have been like to be diagnosed right away.....back then..

I remember in the 90's, I had a problem with my water well. The well guy came to work on it. He was there for hours and I thought he must be getting hungry, so I offered this very thin, pale man some peanut butter crackers. He quickly and gruffly told me he had Celiac's disease and could not eat wheat, rye or barley for life. I remember being embarrassed for asking him he wanted crackers, and we said no more about the subject. Yet, I thought of him for the longest time because as a person who baked and cooked a lot, I understood the ramifications of what he had, even though I had never heard of it before that day, but the more I thought about it, the more I realized how tough his life must be. It's so ironic that several years later, I had become gluten intolerant with a wheat allergy to boot...and was in the same situation as the well guy.

.....so I ask again veterans, what was it like for you? How about you vets who have been at this for a lifetime? Do we have anyone who has been gluten free for 10, 20, 30, 40, 50, 60 years??

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11 years. To me, the hardest part was that wheat didn't have to be listed until 2006, and very few companies listed ingredients online or had gluten-free lists online, so I spent much more time calling companies about ingredients. Virtually no restaurants where I live had heard of being gluten free. None of my friends knew what the heck I was talking about. I educated a lot of people.

Not only were there many fewer specialty items, but most didn't taste as good and "regular" grocery stores here carried almost none of them (I think Kroger had pasta), so you spent time trying to find natural foods stores or you HAD to order online.

richard

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I'm fairly new at it, but my Mom was diagnosed back in 1985. Mom was always a phenomenal cook. When she was diagnosed her doctor told her, "You'll never be able to do it." (He was the only doctor, after years of Mom being sick, who even thought of cleiac, but that was the ONLY thing this jerk ever got right.)

My Dad had asthma and was allergic to preservatives in food so they already had an organic garden and Mom made EVERYTHING from scratch. It wasn't that hard for Mom. She even made her own condiments for Dad, and although she stopped making lazagna, she started making the best eggplant parm I ever tasted.

Mom never developed secondary intolerances so she made cornbread for herself (and the family). Other than that, she always used whole foods anyway.

The difficult part for Mom? When she would go to potlucks and only eat her own food. She would tell people about her celiac, and she would get remarks like, "That's ridiculous!" (I was there to hear that one and I wanted to deck that "lady"!) A lot of the women would say things like, "What's the matter, our food isn't good enough for you?" No matter what she said, none of them understood, and they were all already jealous because Mom was such a good cook. I wonder sometimes if any of those women remember how they treated Mom now that celiac is in the news and they know it's real. I wonder if they are sorry. I hope so.

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Wow Richard, I never even thought about the whole labeling thing. That must have been so tough. I'm so glad that labeling is getting better, and there is more awareness, but still not a lot. People still think I mean glucose, and that I am diabetic...LOL

Bart, your poor mom. I would have wanted to deck someone who would dare say "that's ridiculous" How awful!!!! I just want to give your mama a hug. I had someone recently say behind my back "aint she a piece of work" in reference to my food issues.....sigh. That really hurt my feelings, especially coming from a know it all gluten free dairy free recipe blogger. Who, is just doing it because she believes it's healthier, but has no clue what it is like to really have a problem..I stopped feeling bad though when I realized that I have to consider the source. A know it all is a know it all, and you can't tell em' anything.

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I have been gluten-free for just over twelve years.

There have been major advances in label rules in that time, and many more specialty products have been introduced.

In 2000, there was no gluten-free beer at all. Gluten-free baked products could only be obtained in specialty stores. Today, they are in mainstream supermarkets. There are so many more of them, too.

You still have to read labels all the time, but the list of "may contain gluten" ingredients has shrunk so much. Wheat can no longer be concealed. Rye and oats never hid in the first place. The only pitfall left in the US is flavors that could (but really never do) contain malted barley. In Canada, barley can no longer be hidden--but foods made before August 4th may still be in stores with hidden barley.

Many companies will now fully disclose gluten by naming the grain source. These include (among others) Campbells, ConAgra, General Mills, Kraft, McCormick, and Unilever. These companies own other brands, but look for their name somewhere on the label. If you don't see a gluten grain named, there is no gluten in the product.

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I'm fairly new to gluten-free living, started exploring a little over a year ago. But one of my dearest friends from high school was diagnosed with celiac back in the days before there was readily available Internet. There was no "online" to order from, and very little available in the stores outside of the vacuum-packed Enjoy-type breads. gluten-free labeling didn't happen.

She ended up eating only fresh whole foods (sound familiar to anyone, LOL?) and not using packaged stuff for much of anything. It was hard work, but she did it!

It is so much easier now. Not perfect, but easier!

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Thank you for all the great responses. I sure learned a lot, and feel very fortunate to be gluten free in this day and age and thank those who came before me and paved the way.

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