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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

Top Five Reasons To Get A New Doctor
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#5 You only get less than the average face time of 5 minutes per visit

#4 It takes over 10 minutes non stop talking to explain all your symptoms

#3 He/she says...... :huh: I thought it was a kiddie disease!

#2 He/she says.....do you really think you can follow that diet??

#1 There is only ONE restroom in the office!!! :blink:

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Um, how about this - - your primary care doctor (who THANK GOD referred you to a wonderful GI for serious anemia and internal bleeding) says

"what is gluten? what is it in?" :huh:

I broke up with her.

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(1) When you finally get up the nerve to tell your doc about your embarassing symptoms of gas, bloating, constipation and excruciating gut pain, she tells you "Oh, that's just IBS". Everybody your age gets IBS."

(2) When you ask how to treat IBS, she hands you a diet sheet which recommends you eat more fiber, but especially WHEAT bran.

(3) When you follow her 'IBS' diet sheet suggestions and your symptoms get WORSE, not better, she says, "You'll have to learn to live with it. There's nothing else we can do."

(4) Your doctor wants to test you for all the diseases for which you have no risk factors (like breast cancer, heart disease, etc.), but can't explain or resolve your excruciating gut pain symptoms.

(5) Your doctor tells you that you're perfectly healthy according to your physical exam and test results.

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When your family doctor looks at you like "oh no! not diareah lady again!"

When your GI doctor who gave you your DX says "oh don't worry its not genetic" :blink:

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When your doctor says you are the second patient he has diagnosed with coeliac. (A bit reminiscent of the midwife telling me that my son was her first delivery, so I confessed he was my first baby too!)

Cathy

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When you figure out gluten is a problem ON YOUR OWN through an elimination diet, and you go to the Dr for a celiac blood test, and she says, "You don't have diarrhea. You can't have celiac disease unless you have diarrhea."

When the blood test comes back negative and the Dr says, "See, I told you so. You have IBS. Let me give you a prescription."

When you insist that gluten is the problem, due to dietary response, and she says, "You don't want to be on a gluten-free diet. It's impossible."

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How about when the doctor tries to describe Celiac disease my comparing it to a reaction to poison oak! Totally insulted my intelligence. I never try to flaunt my degree but I had to in order to get him to stop talking to me like a child!

When they tell you that Celiac disease is not a spotty disease relative to intestinal biopsies. Every case he had ever seen had a positive biopsy. (Go figure. <_< )

If the biopsy is negative then the highly positive blood tests were wrong--go home and order pizza.

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First of all--Ann, how funny is it that you started this thread :lol:

Mine was when I started requesting tests and asking about too amny things she just didn't know about.

My doctor was a lovely person, but after I figured out that I might have a "problem with wheat" from an alternative practioner, checked it out with a gastroenterologist, and was finally diagnosed--I told her and she kind of raised her eyebrows and said "did it relieve your symptoms?" :unsure:

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Or when the doctor directs you to the internet for information.

That really was good advise, as this is where I met all of you wonderful people.

Cathy

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When you go to the doctor because you are extremely dizzy, nauseated, bad diarrhea, extremely low blood pressure and heart palpitations and she takes your pulse and says it seems fine...take some dramamine for the nausea and don't move suddenly. Huh? :lol:

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Ann, you are bust-a-gut funny! First, the fact that you started this thread -- which proves that you are the type of physician EVERYONE wants. Second, the reasons are great!

I have one: When the neurologist says, "Well, everything I've read indicates that your antigliadin levels will ALWAYS be elevated, and there is no reason to further check them." When everything he's read has come from articles that YOU supplied and they all indicate that the levels should be checked every 6 months!!!

P.S.: I got "fired" from his office because, after an extremely frustrating 5 minutes with him, he asked me what my neurolopsychological profile said. He doesn't even KNOW what it is! It is a functional test that shows which portion(s) of your brain aren't operating properly. I told him that it said that I have Occulomotor Apraxia, and that my "Minnesota Multiphasic Personality Inventory" was well within normal limits, with a mild increased concentration on a chronic medical condition. I also told him since that test was taken two years ago, I no longer have an increased concentration because, quite frankly, I couldn't give a rat's "arse" if I ever saw another doctor again. ;) Two weeks later, I received a notice that I had a registered letter at the post-office --- from him! Typically, that means, in the words of Donald Trump, "You're Fired."!!!!! :lol:

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Having my GI tell me at my first visit with him I wonder why my partners had you come to me I have only diagnosed 70% of the Celiac patients in his office so I guess that makes me the expert of Celiacs in the office. I told him that I didn't know who I wanted I just wanted an appointment. And if you did have anything I would want you to have IBS that can be controlled with meds.

Having my GI also tell me that being gluten-free would not make a differnce in the test

Having my GI not here me when I say 3 months he heres 3 weeks.

Having my Family Doctor not know what Celiac is I don't blame him for that, but he said I don't think that I have heard of that but I will sure look it up, because he would like to know, for future referance. I ought to ask him the next time someone in the family goes.

Donna

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How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!

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Hey -- my OB/GYN gave me Prozac when I told him that I felt like I was sitting on golf balls!!! Come to find out, I had my bladder and my rectum both distended and pushing into the vaginal walls, and my uterus had dropped to the point that it was coming out (literally). No wonder the Prozac didn't make me feel better!!!!!!! :lol:

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First of all--Ann, how funny is it that you started this thread :lol:

Mine was when I started requesting tests and asking about too amny things she just didn't know about.

My doctor was a lovely person, but after I figured out that I might have a "problem with wheat" from an alternative practioner, checked it out with a gastroenterologist, and was finally diagnosed--I told her and she kind of raised her eyebrows and said "did it relieve your symptoms?" :unsure:

Glad you liked it,Patti!! I am not always a "patient" patient !! ;)

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How about when the dermatologist (whom you've begged to do bloodwork) says that your blood work is perfectly normal--and your IgG is 64 (and normal is under 16 at that lab)?

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Ah, wasn't bad, just uncomfortable. Couldn't figure out why I felt so weird. Then to be given Prozac for it???? :rolleyes:

It wasn't until my first Women's Health continuing education course (you'd know that each one is a WEEK long instead of a weekend) that I found out what was wrong with me. I am the type person who had a pap every 18 months, just so I didn't have to go in as often! My boss asked me to be the liaison for this course. I was working for a larger corporation, and to do this would give me more "visibility", according to her. PLUS, I'd get the course and my lodging for free. So, without doing my homework, I said "Sure." Then, the day before I was supposed to leave, my co-worker and friend said "You know, you are the LAST person I thought would take this course." I said, "Why'd you say that?" She said, "Because of the lab." I said, "Lab? What Lab? How can you have a lab when you are learning . . . OH NO." She started howling laughing. She said, "You didn't READ what you were getting yourself into???!!!!! You don't even go to the gynecologist like you should!!! You're going to spend one entire week practicing on each other!!!!!!!" I thought I was going to die.

It only got worse when the instructor started naming symptoms, and asked us to raise our hand if we had any that she would name. Of course, ALL of the girls in there were 20-something, none with kids, so here I am 38 years old, two kids, both difficult births, and answering in my head "yes" to all these questions!! When we get to the lab portion, the two young girls I was working with said, "OH MY GOSH. Should we get the instructor?" I knew then I was in trouble. They asked if I wanted a mirror, and I said, "Why not." The instructor came over and asked me if I had answered yes to any of the questions. I told her all of them. THAT was how I found out all those things were wrong.

What I found after that? The way that a LOT of women find out about things like that are in the Physical Therapist's office -- one that specializes in Women's Health. There are a lot of women in Louisville who are on Prozac, etc., for a problem that is NOT in their head.

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Your doctor tells you that you're perfectly healthy according to your physical exam and test results. This may be the most aggravating answer I have gotten too. If I am so normal and in the normal range, then why was I so sick and why do I feel so bad now. I just had an endo tell me that my numbers all fall into the normal range and, "You are extremely high risk for thyroid disease, come back in one yr for another checkup." Some of them have no clue.

Then there is the doctor I went to last year, named Kevin. When I told him I have celiac disease, he says, "I know all about celiac disease, my son has it, he can't have barley." At that point, I felt bad for his son. Dr. Kevin had no clue about celiac, not really, which is very sad--his own son was diagnosed with it and he didn't read up on it. How sad is that?

Or when I heard a very well known celiac nutritionist tell a celiac, "You can wear any make-up, it doesn't matter, you are not eating it!" Yes, when the same person asked me something, I also explained to her about being very careful with make-up.

There is so much ignorance out there and yes, I do expect it from people, but not from doctors, especially when celiac disease/gluten intolerance is so much in the news now.

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Upon your first visit to this doctor; never having had a prescription for anything from this doctor (prior prescription from this facility was that they gave "Colace" to someone with non-stop diarrhea!). You're sick, scared, exhausted, weak and desperately wanting to feel better; you ask for what is state of the art in those days (lower barium GI series - meaning thru rectum test) and the GI accuses you of only being there to get drugs "You junkies are all alike. You only come here for drugs!" You respond to Dr. Jerk, "I don't want any prescription drugs! What kind of a nut do you think I am asking fo a barium enema?" You leave the facility without test or prescriptions and realize you need a new non-Govt Issued doctor.

1977 East Orange Veteran's Hospital (no wonder Walter Reade Hospital has been found to be unfit)

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When your GI DR. says he(my son) can't have celiac as he doesn't look malnutritioned even after reports of a high blood test(154) 4 years previous(and a neg biopsy) and being high risk w/ having down syndrome and yes he did have a distended stomach.

Good thing he accidently found it w/ a scope alongwith gastritis and a hiatal hernia.

At least I had a son and not a daughter so they could not sayit was allin his head because of hormonal issues.

Karol

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Hi my favoritte one is when the doctor looks at you and tells you: Is all in your head.

Thanks for starting the thread.

Best regards everyone.

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This is funny!

How about when a hemotologist tells you 'you're a woman, women get anemia. As soon are you get through menopause your anemia will go away' and you're only 43 at the time.....and have not started menopause yet?!!!

Also, my dx'ing GI told me 'you can still eat rice, corn and potatoes and hung up' - literally. I fired him that minute though he didn't know it until he got my letter explaining a few things to him about the gluten free diet and how NOT to treat future patients who had it.

On the flip side my pcp was honest to say she was told she'd never see a patient with Celiac but now she has serveral with it. Her assistant called the other day and asked if I'd ever heard of someone being misdx'd with MS when they actually had Celiac (she pronounced it selliac) and I said YES!!!!!!!!!!!!

She also asked why so many people were being dx'd with Celiac (again pronouncing is incorrectly though I corrected her the first time). I reminded her that I'd told my doctor this was coming over a year ago. Sometimes people just don't listen unless they are hit over the head.

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