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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Do You Make Then Understand What It Is!
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63 posts in this topic

I would not worry about offending your hosts if they are not worried about giving you gluten! People who care about you will want you to be healthy! I would not be offended if someone asked me about what I put in my food.

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We just had the our women gymnastics team meeting. Usually we hold it at one of the women's house and everybody brings something to eat. Cause I wasn't sure, what time it started, I called one of the other women ahead and then we got to talk a little bit. By the way, they all know, I can't have gluten. And she said, "Oh, and you can have mine, it's without gluten..." I told her then, that I rather not have it, because she doesn't know anything about feeding me safely and there could be hidden gluten. She didn't understand at all. Then when we were at the meeting, we had some vegetable with a dipping sauce in the middle. I only ate the vegetable and the chinese wrappers I had made. Then I took the dipping and looked at the label, put it back on the table and went on with my eating the vegetable without dipping. Couple of minutes later somebody asked me, why I don't eat the dipping. And I told them, there was probably gluten in it. :blink: They looked at me like I was stupid and I got these "since when does dipping have wheat in it"-questions. I just replied as ignorant as they talked to me: "What do you think they bind it with? Already heard of wheat flour? And do you know what modified food starch is???" Then, probably to try to get their right...whatever. Another one said: "Oh, just try my potatoe salad." I replied: "What's this white sauce on it?" She said, it was Mayonnaise. I replied, Bingo, same thing, even Mayo has this in it.

Darn, people are really ignorant. Then just as if they wanted revenge, only one of the women ate my wrappers. To damn bad, then I had all the good wrappers for myself. Yippie! :lol: People are really stupid sometimes... <_< I told them, if they are really interested in feeding me the right way, that I could teach them. But they would need to know certain brands that state these things on the label and the right kitchen supply. That was it, end of discussion. I guess nobody bothers me again...lol.

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People are just so inconsiderate and always feel insulted because you refuse to eat what they make or whatever they bring. Most people don't understand when I say I can't have wheat so they automatically think that I can eat white bread or white pasta. I have up explaining what wheat was and just tell people flour or anything used as a thickener. Some people are just not worth the trouble of explaining cause they'll never understand.

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Stef,

Your insensitive friends have inadvertently put their finger on the rub. Wheat and its derivatives generally don't belong in salad dressings or potato salad or ice cream or a myriad other things, but there it is. It's not giving up Bunny Bread that makes the diet so tough, it's having to dodge all the bastardized foodstuffs.

I can't wait until next year. "Natural flavor" is really chafing my hide lately.

Sarah

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Hello Sarah,

what is next year. Did I miss something? Please inform me, if I did. I haven't been here for quite a while.

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I understand Stef. I am renting a cabin with some friends this weekend and my friend went grocery shopping for it, and explained all the things to me that I "could" eat that she got, and I replied to most of them.... "sorry, can't eat it !"

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Hello Sarah,

what is next year. Did I miss something? Please inform me, if I did. I haven't been here for quite a while.

I don't know if this is what she is talking about but a bill came out that passed that companies must list whenever their food contains the top 8 allergens(which includes wheat) Even though this won't cover rye, barley, or oats it is a good step for them. Natural flavoring would have to say wheat by it if it contains it, and that kind of thing...I believe this comes effective in the beginning of 2006

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Ah, yes, I heard about this bill, too. Well, then we definitely know where wheat is in, hugh? But it won't help us much, cause we still don't know, what we definitely CAN have.

@ jenvan: I read the post you wrote about this weekend in the cabin. I didn't reply, but if I was you, I would go with my "gut" feeling. Means, if you don't want to go and you're tired, just don't go. Your body knows what it needs. And don't feel bad about it. There will come another opportunity...

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I heard the same thing from a close political friend who works in Washington about this Bill too. I'm hoping this will give us more choices in the future on what we can grab and eat.

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Rob, the family has been one of my biggest challenges. I married into a very large Mexican family where food is apart of every social occasion...even just a 15 minute visit. At work, where we were going out to eat every day, it isn't much easier. :o AND I'm getting tired of being the center of attention and talking about it 20 times a day. :blink: So, what I started doing this weekend is I prepare my own meal and take it with me. There is a rice pasta by Tinkyada that is really good...not mushy. I made macaroni salad, took my own meat, veggies, and fruit. Even my own corn chips and salsa. This seemed to relieve some of their gulit for not feeding me, which reallyl isn't their reponsibility. I am also learning to ignore the ignorant. I thought finding the right foods was going to be the most frustrating, but this family/friends issue is really at the top of my list. Good luck in find your way. :)

Kathleen

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I come from a Mexican family and totally understand. Now after me being celiac they have made sure that they cook everything with natural ingredients with lots of corn tortillas.

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I'm still so new to this that I don't always ask the questions I should. A couple of weeks ago my sister-in-law brought over some rice with fideo in it. Not even thinking I ate a lot of it. The next day I really had some intestinal issues and started thinging back on what I had eaten. Between the fideo and maybe the tomato sauce she used...well, anyway, since then I have been taking my own food. I'm constantly learning and educating.

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We need to wear flashing signs in the middle of our foreheads. Listing

Toxic Food that is KILLING US! So each time we don't have to explain to people who don't understand.

I like that web set you-don't-look-sick-dot.com...they are right people don't get it!

I feel the same way too, being Italian -- my entire life with sweet cream butter on Italian bread, pasta, macaroni, cheese, canolli's, cheesecake, capacinno... :wub: Oh, I could just died now. :o I can't e-v-e-r - <_< - n-e-v-e-r eat them again. :o No wedding, birthday, or créme brulée. :angry: Oh God why?! :lol:

So how do we make the world wake-up and take notice to Celiac-Sprue?!

We need to find some major celebrities who are suffering, as we are with CS, and get an awareness movement going.

First I think, we or it, has to have a name that people can say and remember. Like TOXIC Food Disease, or something else then what it is. When I say, "I have Celiac Sprue", people look at me like, "...what? How do you say it? Do you spell it with a S, or is a who? ...Gluta Huh?" :wub:

Where did the sillyak name came from anyway? :rolleyes:

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    • does your diet have to be like a perfection?
      Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening.  As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise. You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way. Good luck.
    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
    • 3 months gluten-free still feeling cramps
      First of all, your doctor does not seem to be celiac savvy.  It is so easy for a GI doctor to miss patches of intestinal damage on an endoscopy because the small intestinal wall, if spread out is the size of a tennis court!   How many samples were taken and submitted to a pathologist?  A visual look from the GI often results in nothing!  For example, my endoscopy visual was recorded as normal.  But my biopsies revealed moderate to severe intestinal villi damage (Marsh Stage IIIB).  GI's are supposed to take four to six tissue samples.  I would suggest getting copies of all your lab/procedure reports.  Don't trust me.  Here's the research: http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis Next, three months of eating gluten free is not very long.  The reality is that there is a steep learning curve to going gluten free.  You can get "glutened" by kissing someone who just consumed gluten.  You can get it from a shared toaster, coated frying pan, wooden spoon, etc.  Gluten can be hidden in prescription medications, etc.  Do you EVER eat out?   I can tell you that it took me a year to feel pretty good and another to feel really normal!  My learning curve was not so steep since my hubby had been gluten-free for 12 years prior to my diagnosis, so I knew the drill.   You could have something else besides celiac disease.  Like SIBO, Crohn's, etc.  You might consider going back to your GI for another celiac antibodies test to see if you are diet compliant  before looking into other illnesses.   You could have developed intolerances (lactose is a huge one).  These can be identified by keeping a food diary.  They develop because your gut has been damaged (or is continuing to be damaged by gluten).  You might consider digestive enzymes (use certified gluten-free ones) and stick to whole well-cooked foods (including fruit) for a month or so.  I can tell you that I could not eat eggs for years.  Now I eat them daily.  Same for hard-to-digest things like nuts and crunchy fresh veggies!   Check out our Newbie 101 section pinned under the "Coping" section of this forum.  Review it to be sure you really are gluten free.  Then give yourself some time to heal.   I hope you feel better soon! 
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