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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

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Many of you know of my troubles with a doctor who was filling in for my regular GP, that told me I was bulemic, anorexic, etc.

Well I went to see my GP who was back from a well-deserved (IMO) holiday to Australia. She said that I looked better, and I told how well I felt since going gluten-free. I told her about how I have been regularly "going", and how my brain fog has gone, I'm more energetic, less nausea, no more fatigue, and though I do have my bad days I am feeling better overall. The response was not what I expected. She must have been talking to the fill-in.

She told me I am not a coeliac, and asked me if this is an "obsession" I'm going through, because I used to have OCD which I still do a wee bit, but have overall conquered-on my own.

I said no, it can't possibly be. There's no way I could "Fake" being well. So then she said I was probably just gluten sensitive, and I could "grow out of it" but that most people feel better when gluten is eliminated from their diet because they stop eating junky foods.

:(

I felt as if I were talking to the wall behind her. I might as well have been talking to the wall, expecting it to talk back. At least it might have been concerned.

So here I am again! Gluten-free, feeling better, showing the main plus more symptoms of coeliac disease but.....it's just a phase (says she).

I needed to vent :P Thanks for reading, those who did :D

I'm staying gluten free, and I'm going to wait until my hospital gets a gastro specialist that I can go see.

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You know what makes you feel better. And that's all you need. Screw the dumb%$##@!

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Stay away from this woman who doesn't even know what she doesn't know. Her holiday did not do her any good. She does not even know that celiac can make you OCD :blink: Oh, if only we could all fake being well we wouldn't need stupid #%&&es like her.

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I can't even remember all of the horrible things doctors have said to me over the years. There are compassionate and educated doctors out there (a few but they do exist). You should try to find a new one because the one you are seeing is not doing you any favors...

Where are you? Someone may be able to recommend a good doctor :)

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I feel so bad for you! I have walked in your shoes. It's bad enough to have to deal with the gluten symptoms, but once finding the cause of your problems, having Docs imply that "it's all in your head" is infuriating! :angry:

It's like being told you're crazy, when you actually have a disease.

Unfortunately, there are many more Docs out there just like the ones you've seen. I've seen my share too.

Stand your ground and stay gluten-free. You don't need a Dr.s permission!

Nobody will ever know your body better than you. Not even Dr.s. Listen to your body...you have to live with it..they don't.

Best wishes..and (((hugs)) for having to deal with clueless medical people.

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Has anyone ever seen Doc Martin before? That's the kind of town I live in. One doctors office, and everyone knows everybody, so there's not much of any chance of me finding a new doctor. But yes, I am staying gluten-free. Thinking of wheat and barley makes me sick, and as much as I cave a rye biscuit I stay away. It's POISON.

Thank you for your support! It's keeping me going. Some of my family understands, the other half doesn't. So....I just need some convincing to do!

Signed, your self-diagnosed coeliac.

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There are compassionate and educated doctors out there (a few but they do exist)

I've also heard that there is an Easter bunny and an old guy named Santa.

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And then there's the tooth fairy who will exchange your tooth under the pillow for a sixpence! Now we all know by a certain age that these are our moms and dads, but some of us continue to believe that the medical professionals are the Easter Bunny or the Tooth Fairy who can work magic, when in reality they are - just like all of us - flawed human beings with varying levels of expertise. The sooner we stop thinking of them as as Santa Claus or Gods and start thinking of them as employees of our individual corporations of one, and holding them to the standards we would hold of ANY employee, including skill, knowledge, expertise, politeness, consideration, caring and attention, the better off we will be. As a patient we owe them the duty to be polite, a good historian, as knowledgeable as we can be about our condition and body, and respect - until we learn that they are not due respect. We enter into a partnership when we consult a physician, and if your partner is not working as a partner, but as your enemy, it is time to dissolve the partnership and seek someone who will. Unfortunately for you folks in small towns, or with health system constraints, this is not always that easy, but it should be the goal. You cannot get help from someone who is working at cross-purposes with you. :P

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Many of you know of my troubles with a doctor who was filling in for my regular GP, that told me I was bulemic, anorexic, etc.

Well I went to see my GP who was back from a well-deserved (IMO) holiday to Australia. She said that I looked better, and I told how well I felt since going gluten-free. I told her about how I have been regularly "going", and how my brain fog has gone, I'm more energetic, less nausea, no more fatigue, and though I do have my bad days I am feeling better overall. The response was not what I expected. She must have been talking to the fill-in.

She told me I am not a coeliac, and asked me if this is an "obsession" I'm going through, because I used to have OCD which I still do a wee bit, but have overall conquered-on my own.

I'm of the view that many doctors end up doing more harm than good. Iatrogenic illness due to mistreatment and misdiagnosis is also rampant but largely unrecognized due to the public's ignorance of medical and biological sciences. Not going into detail because it's too much of a rabbit hole to get into.

I was diagnosed with celiac disease about 10 years ago. About four years ago, when I started rapidly losing weight, I went to my GP, who accused me of being anorexic. She knew about the diagnosis of celiac, she knew I was coming to her concerned about sudden and rapid weight loss, yet she was adamantly positive I was anorexic, not eating, and lying about it. Obviously, she's not my GP anymore. The weight loss ended up being from CC of gluten but I didn't find the source of it until losing over 40 lbs and 3 months later.

Sometimes you have to listen to your gut feeling, not someone with a license to diagnose.

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I'm of the view that many doctors end up doing more harm than good. Iatrogenic illness due to mistreatment and misdiagnosis is also rampant but largely unrecognized due to the public's ignorance of medical and biological sciences. Not going into detail because it's too much of a rabbit hole to get into.

I was diagnosed with celiac disease about 10 years ago. About four years ago, when I started rapidly losing weight, I went to my GP, who accused me of being anorexic. She knew about the diagnosis of celiac, she knew I was coming to her concerned about sudden and rapid weight loss, yet she was adamantly positive I was anorexic, not eating, and lying about it. Obviously, she's not my GP anymore. The weight loss ended up being from CC of gluten but I didn't find the source of it until losing over 40 lbs and 3 months later.

Sometimes you have to listen to your gut feeling, not someone with a license to diagnose.

Oh my! what a horrible thing to happen to you! Why do doctors always assume we are liars?

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Oh my! what a horrible thing to happen to you! Why do doctors always assume we are liars?

Because, unfortunately, some people are liars. I have a relative who is anorexic and it's important that the doctors find these people, too. But I don't know if accusing people of lying is the way to do it.

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It is so unfortunate when we patients are not "trusted" to be believed by our Medical support system. Our Dr's need to know that "trust" is a two way street! So, I just changed Dr's due to that very reason. My new Dr and I will be developing that patient/Dr relationship. I let her know how dismayed I have been in the past by some of the medical society, and at this point, she and I are off to a good start.

One great question my new Doc asked me was, "Are you in a support group for Celiacs?" I thought that was a great way to let me know, she understands the importance of strengthening our concerns and questions through others dealing with this lifetime conviction of being gluten-free. At that point I replied, yes, and added that one of the moderators of that group, when asked about Dr care, let me know that they were just told to go gluten free dieting and that was about it. She looked at me somewhat incredulously. But I also felt she knows that to be true.

There is no reason to put up with an inept medical group. Even the LPN who took my vitals and some history before the Dr came in, was knowledgeable with Celiac. She said they have many Celiacs who will not follow the diet, and asked me how I was doing. Caring yet careful.

Your comfort zone in this journey is so very important. I am grateful to get some feedback and assistance here since I am new to this. Wishing you all the best as we journey forward. :)

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IMHO, it's simple economics. When you can effectively treat yourself and eliminate 90% of your health issues by going on a gluten-free diet, your doctor doesn't get the perks from the big pharma sales reps for the bronchio-dialators, inhalers, omeprezol stomach acid reducers, anti-diharreals, laxatives, pain and nerve meds, skin emollients, anti-histamines, expectorants, steroids, and every other feckless anti-symptomatic drug they expect to bill you and your insurance company for.

Doctors and Drug Companies aren't stupid, they KNOW they can't make any money by "curing" our problems, that's why they put us on life-long drug regimins to "control" them, as well as more drugs to control the side-effects caused by the drugs we're already taking!

Example: My doctor wanted to start treating me for Diabeties. I have no family history of the disease, I am not overweight, neither are my glucose levels out of whack. He wanted to do it simply because one of the drugs he already had me taking actually CAUSES diabetes as a side effect!

I stopped taking the drug, and started looking for a new doctor.

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IMHO, it's simple economics. When you can effectively treat yourself and eliminate 90% of your health issues by going on a gluten-free diet, your doctor doesn't get the perks from the big pharma sales reps for the bronchio-dialators, inhalers, omeprezol stomach acid reducers, anti-diharreals, laxatives, pain and nerve meds, skin emollients, anti-histamines, expectorants, steroids, and every other feckless anti-symptomatic drug they expect to bill you and your insurance company for.

Doctors and Drug Companies aren't stupid, they KNOW they can't make any money by "curing" our problems, that's why they put us on life-long drug regimins to "control" them, as well as more drugs to control the side-effects caused by the drugs we're already taking!

Example: My doctor wanted to start treating me for Diabeties. I have no family history of the disease, I am not overweight, neither are my glucose levels out of whack. He wanted to do it simply because one of the drugs he already had me taking actually CAUSES diabetes as a side effect!

I stopped taking the drug, and started looking for a new doctor.

This was a great post, Stu, and I couldn't agree with you more! I realize that some people have medical issues that need a doctors care but I find that people rely too much on doctors to begin with. Celiac's can do well on their own, after they are healed. There is no need to go overboard with additional testing, unless you are having problems which need addressing.

I am fully healed and have been doing this for 7 years now. I can't remember a time when I did eat gluten so no need for cheating on my part. I tend to stay away from doctors for the most part, except to check in about every 3 years. I did that because I am over 50 and that's when pressure is exerted to get you on all kinds of meds you probably don't need. I had to tell my PCP that I do things my way and I was not going to be plied with meds, unless I would die if I didn't take them. I find that my diet, my exercise regimen and staying away from doctors unless needed has done more to improve my health than anything they will try to give you. I was pretty sick when diagnosed....all 97 pounds of me. I didn't get better until I did things on my own because the only thing they seem to do today is medicate, medicate, medicate. :blink:

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And where I am a man, the doctor really suspected I was lying....because coeliac is more common in women, but nonetheless I've been gluten-free for a while now and I've been getting better, I can really tell!

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Many of you know of my troubles with a doctor who was filling in for my regular GP, that told me I was bulemic, anorexic, etc.

Well I went to see my GP who was back from a well-deserved (IMO) holiday to Australia. She said that I looked better, and I told how well I felt since going gluten-free. I told her about how I have been regularly "going", and how my brain fog has gone, I'm more energetic, less nausea, no more fatigue, and though I do have my bad days I am feeling better overall. The response was not what I expected. She must have been talking to the fill-in.

She told me I am not a coeliac, and asked me if this is an "obsession" I'm going through, because I used to have OCD which I still do a wee bit, but have overall conquered-on my own.

I said no, it can't possibly be. There's no way I could "Fake" being well. So then she said I was probably just gluten sensitive, and I could "grow out of it" but that most people feel better when gluten is eliminated from their diet because they stop eating junky foods.

:(

I felt as if I were talking to the wall behind her. I might as well have been talking to the wall, expecting it to talk back. At least it might have been concerned.

So here I am again! Gluten-free, feeling better, showing the main plus more symptoms of coeliac disease but.....it's just a phase (says she).

I needed to vent :P Thanks for reading, those who did :D

I'm staying gluten free, and I'm going to wait until my hospital gets a gastro specialist that I can go see.

Congratulations on feeling better! Leave it to a doctor to make you feel bad about feeling better. The more and more I interact with them, the more and more impatient I get with them.

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