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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

I Work In A Clinic
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To me, any situation where you can mention celiac disease creates awareness. Awareness of the disease is what we need more of. I'm not sure HOW it could be negative to create awareness for us as a group.

Talk about it, spread the word, lay out the brochures if you can't talk directly to the people.

-Jessica :rolleyes:

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Our country has really gone backwards in terms of political correctness. That whole movement started out for the right reasons, but now you can't say anything to anyone and it's really ridiculous. I mean, what's the harm in talking to someone about celiac disease? They don't have to listen, now, do they? Especially if it's a stranger you'll never see again; who cares if they think you're nosy?

Unless it's a clear conflict of interest to discuss celiac disease with someone, such as the people who work for doctors, I think anyone has the right to talk about celiac disease whenever and wherever they want. If I worked for a doctor, I would hope he/she would be open to my discussing celiac disease with them. As a teacher, if someone comes to me with a teaching stategy I've never used, I will certainly listen, even if they're not a teacher. I realize, though, that you can't help who you work for and if you work for someone who wouldn't be that receptive, you shouldn't say anything because you certainly don't want to lose your job.

Other than those specific people, anyone has the right to say anything about celiac disease to anyone.

Political correctness should curl up and die. I am so sick of it.

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BamBam,

You didn't say what kind of Clinic you work in so this

is just a thought. How close to the Doctors are you?

Have you ever dicussed how you feel? Maybe they

would be open to test these patients, are they aware

of Celiacs? Perhaps brochures for them would help.

As a nurse for many years I know some doctors

would appreciate this info, mine did when I gave him

a list of gluten-free meds. I also know some have such big

egos that they would brush this off. Just a thought.

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This is my first time on this site. I am fairly new, being diagnosed about a year ago. I have been sick my whole life, getting worse as I got older. Mostly stomache aches, diareah, body aches, and exema and rashes around my mouth and neck. I always thought I just had a "sensitive" stomache and skin. Doctors said there was nothing wrong with me and dermatologists said that the rashes were caused by (you name it) toothpaste, coffee, touching my face, whatever. At the age of 25 (during my 2nd pregnancy) things got progressivly worse. horrible neck and back pain, nerve pain, horrilbe, crippiling at times, joint pain, terrible nausea. I thought it was all related to the pregnancy, but nothing went away, in fact (of couse) things got progressivley worse. Starting about 7 years ago was when it hit full force. The stomach pain was so severe I would pray to God to please let me die. Joint pain so severe I could'nt walk at times. My elbows felt like they were chronically broken, thyroid problems, ect. ,ect.. Doctor after doctor didn't know what was wrong with me. I had every test imaginable (sound familiar to everyone?) Gollblator, lupus, MS, lymes disease, collon cancer ect. ect. I was finally told that I had IBS. The Doctor actually said "We don't know what causes IBS, but there seems to be some corolation between it and sexual abuse, so if you have any of that in your life you need to see a phyciatrist" The comment made me feel like he was suggesting that my problems were because I was nuts or something. I finally read an article saying that people with IBS seem to do better on a diet low in bread products. Trying anything, I got rid of it all, low and behold it was like a miracle. I didn't know why, I figured it was some preservative in bread or something. I took another 6 months before someone told me of a friend of there's that had the same symptoms and that he was diagnosed with something called celiacs, she suggested I look it up on the internet. When I read the symptoms and figured out this was what I had my whole life, I sat and balled my eyes out. So many years of suffering, so many doctors, tests, all of it could have been avoided if someone had just suggested a simple food allergy to me . I would give anything to get those years of my life back. I wish there had been a poster or something I could have read. The idea of literature in the office would have been a Godsend. You could save someone's life by handing them a simple pamphlet. I finally saw a doctor who knew what he was talking about, got the blood test and the biopsy and have been gluten free ever since. I am so thrilled to be well, to FINALLY feel great. Life is good :lol: I tell any one who asks or anyone who tells me of any similiar symptoms. soap box or not if I can help anyone to not go through what I did, I will. So PLEASE put up posters and speak up if anyone asks.

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Hello Watkinson,

welcome on this message board. Your story sounds really painfull and familiar. Shortly before diagnosed I also thought I get nuts and I wanted to die, cause I just didn't want to have pain anymore. I didn't actually beg god for it. I actually thought about crashing against a tree with my car full speed or against a wall or something. You are so right. I would have given anything for a brochure at a doctor or a hint from somebody or something. I hope you get all better.

Hugs, Stef

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watkinson

You have an amazing story to tell. I also went through the same diagnosises, doctors as you have. From 1986-1996 I had many colonoscopies and upper Gi and lower GI and lab work and everything else you can think of. I was delivering some Avon one evening to an elderly lady and she says, "Bernadette, what is wrong, you just are not your self these days." So I told her the whole story and she suggested I give up wheat. So I thought that meant bread and pizza crust. So I gave up bread, and felt an immediate miracle of well-being. However I did not understand that wheat/gluten is in pretty much everything I buy at the store. I continued eating Rice Chex and Corn Chex, and I felt better, but not 100%. So in June of last year I joined this message board and learned nearly dozens of things, and on August 6, 2004 I went totally wheat/gluten free. I am almost 100% now! Some people tell me that since I wasn't diagnosed by a doctor that I am wrong and it is just IBS or something I have to live with. To get testing done now, I would have to eat wheat/gluten for six weeks, screw up my insides again and have a doctor tell me what is wrong. Well, this time I'm not going to the doctor. I know that I feel 100% on a gluten free diet. I don't need anyone to "diagnosis me."

I am so glad you found out what is wrong.

BamBam

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Hi guys, thanks for the notes. Your right Stef, a tree might have been good too. :P

Being a celiac is so wierd. When I was still suffering I lived daily on anti-diareah meds. at least 2, sometimes as much as 4 a day. I would feel okay at times but then I would get nausiated, so, of course, what do you eat when you feel sick? crackers, toast, chicken noodle soup, you know, all the mild stuff you think will make you feel better. Initially it did, but after an hour or so of course I would feel worse. Then the attacks would happen! sometimes daily, but always at least 4 or 5 times a week. I would always say having a baby was nothing, I could handle that pain anytime. These attacks were like last stages of labor, but add an entire torso charlie horse, add shooting pains going up and down my legs and arms, my hands and feet would feel prickly like they were asleep. I would throw up over and over, I think sometimes I would go into like a mild shock from the extreme pain. I thank God I found out what it was. :D

I also made food mistakes in the begining. Especially when I did'nt know it was gluten yet. I was still sick alot but felt so much better. Most of my stomache problems were gone, but every other problem was only a little better It was'nt until I discovered that it was celiac disease and did a ton of research. Some of the research is confusing. One place will tell you vinegar is okay and another will say no, the same for oats, ect. . Each person has to figure it out for themselves, how it affects your own body, and like many others have said makeup, body lotion soap, ect. is all important. Sometimes it's hard to get an answer from manufacturers. They often just basically don't know because they get their ingredients form ouside sources. You basically have to go organic. Keep researching. Thank God for pres. Bush and his food labeling act.!!

Over ther last year since being diagnosed, getting rid of all gluten mostly did the trick. All stomach problems are completely gone! :D:lol: My thyroid corrected itself :P and most of the body aches and pains dissapeared. But I say most. <_< I would still have that feeling that my elbows were broken at times and would still get shooting pains going down my arms, and my hands would fall asleep. I wondered if maybe it was caffiene, but getting rid of it did'nt seem to make a difference. Then I tried sugar...no, Then I noticed it seemed to be corn. guess what? Made a huge difference :o I have been off all corn and corn related products (corn oil, corn syrup) for over a month now, WOW the pain is SOOO much better! no more hands asleep no more waking up in the middle of the night tossing and turning because my arms and hands and back hurt so bad. My back pain is crazy better! I have suffered from that since JR high school. I'm not saying all of it is 100% gone, but it's so great that it feels like it.

I believe that it takes the body a long time to fully recover, after all it took a long time to break down in the first place. I don't miss anything I've given up, if I feel better I'm thrilled that it's out of my life. Doing research is a blast, finding foods I can eat is like a hid and seek game :) Life is good.

Hugs to all, Wendy

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Some people tell me that since I wasn't diagnosed by a doctor that I am wrong and it is just IBS or something I have to live with.

Hello BamBam,

Yeah, I heard that a lot, too, unfortunately. I hate people like that. Diagnosed or not diagnosed. We all no, that gluten makes us sick, so why not withdraw completely from gluten? I'd say, the docs probably could be more wrong, then what your own feeling tells you here. My whole life I had an uncomfortable feeling with foods, that harmed me (what I know now, i didn't really know it then, of course), so my body always knew somehow. Strangely enough I always found it eeeeew, to drink from other peoples bottles or eat with their forks or something like that. You know, for example, when you travel and don't have enough dishes. Now I found out about the cross contamination. Isn't that strange? And when I look back actually ALL the food that isn't good for me, i always knew somehow, it just never REALLY occurred to me.

And so the other people should just sh... up. Sorry for my language, but they make me so angry. Who are they to tell you, you have to live with it? No, you DON'T have to live with it, because you already found out what causes it, period.

And some (not all) docs use IBS just as a diagnosis, when they don't really know, what it is you have.

Hope you all stay healthy. Hugs, Stef

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Really happy to hear you're feeling better on the diet, Wendy.

I know what you mean about when you felt sick--eating all the bland foods that yo thought would make you better. It's rather ironic that when I felt sick I'd eat Cheerios, toast, saltines, or some gluten-containing chicken broth....all the stuff that caused the symptoms in the first place. I've always thought that, but never really voiced it...good point :lol:

My whole life I had an uncomfortable feeling with foods, that harmed me (what I know now, i didn't really know it then, of course), so my body always knew somehow. Strangely enough I always found it eeeeew, to drink from other peoples bottles or eat with their forks or something like that. You know, for example, when you travel and don't have enough dishes. Now I found out about the cross contamination. Isn't that strange? And when I look back actually ALL the food that isn't good for me, i always knew somehow, it just never REALLY occurred to me.

Stef, I know what you mean...I started noticing that every time I ate pizza, I'd get sick that night...just never put two and two together. I also found it gross to share bottles, etc.... :) Funny how our instincts sort of....guide us on some of these things, even though I couldn't pinpoint it to gluten or wheat.

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It's quite interesting what our instincts to for us. Here is a story I will share:

When I was a kid, my mom had a huge problem with getting me to eat. Nobody could figure out why I had such a poor appetite. Also, I was always anemic as a child. I can remember going for the weekly pin pricks in my finger.

Anyway, the only thing my mom could get me to eat back then was potatoes. Mashed potatoes, baked potatoes, french fries. Morning, noon and night, that's all I would eat. The pediatrician told her to just go ahead and let me eat them, that sooner or later my appetite will pick up. Looking back, I realize now that it was my body's way of telling me what was safe for me to eat.

I think our bodies are quite amazing......

Karen

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Wow--that's so funny! I was the same way pre-diagnosis. I had a really poor appetite, as well. I always finished my potatoes, but if we had spaghetti for dinner, it would seem to multiply in my bowl :)....wow, it seems like we all have a lot in common with regards to eating.....

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