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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

The Problem With Doctors

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I talked with my GI doctor and while the visit began with her (actually my main GI's assistant" trying to convince me that I needed to go back to eating wheat so they could get a biopsy, by the end of the visit I convinced her that the only sensible thing is for me to continue my gluten-free diet for a few months and see if I continue to improve. The way I see it, if being gluten-free means that the symptoms I've suffered for decades go away or are even just lessened somewhat, then that is enough diagnosis for me. Sure they like to have the test, it makes it much easier for them and their paperwork. It's easier for insurance reasons, prescription purposes, records, etc if they can use the "gold standard" (her exact words) but as far as I'm concerned those aren't my problem! I was sick, and I wanted to put an end to that. That's all I care about. I used to always follow my doctors' recommendations in good faith. This led to some serious problems for me when I developed mouth sores which didn't get the treatment they needed from my physician and eventually led to my admitance to the ER for dehydration, where I finally got the treatment I needed. Shortly therafter I developed Bell's Palsey as a result. Bell's Palsey is a paralysis of on half of the face caused by nerve damage frequently associated with mouth sores. My doctor told me it may go away in as soon as a few weeks, or as long as a few years, or it may never go away, but that there was NOTHING I could do about it except tape my eyelid shut when I sleep so that my eye didn't get damaged (since with BP you can't blink or close your eye) and that I should drop eyedrops in my eye all day long to prevent it from drying out. I decided to do my own research and found an online community much like this one. They had literally tons of advice for me, including information on why it was essential to start vitamin and hormone therapy immediately when the symptoms appear or it grows too late for them to be effective. I went back and insisted that my Dr. prescribe the hormones and I bought the vitamins myself. I made an eyepatch from a sunglass lense to keep my eye from drying out during the day. After only a couple of weeks I was already nearly 100% better, no thanks to my physician whatsoever! That's when I started to believe that people need to take the reigns themselves when it comes to their health. It seems like every doctor I've ever been to has a different agenda- one will always test for one thing regardless of the complaint while another is always pushing antibiotics and yet another is telling you all you need is to eat natural foods and get more excercise regardless of what's wrong with you. They do this because it is what has worked for them based on their experience. But you are more familiar with your body than they are and no matter how caring they are they can't possibly have as much interest in your well-being as you do, so ultimately it's up to you to find what works and make it happen.

Actually in my history with physicians I've found that they sometimes like to do too many unnecessary tests, and I used to always go along with them but now realize that they are often expensive, risky, and sometimes not even warranted. So now I do my own research and decide for myself whether or not I will have the test done rather than allowing them to simply prescribe it for me and blindly follow their counsel. The last straw for me was when my eye doctor had me do a battery of tests because I had "high eye pressure" which could be an indicator of impending problems, even though I didn't show any other signs of having those problems. It turns out I simply have naturally thick corneas, and the resulting tests cost us over $500 in bills not covered by our insurance! Somehow they forgot to mention that those tests were considered "medical" tests and thus they were not authorized by our insurance to perform them. <_< After that my next bad experience was with a dentist who despite my 15 minute speech on how jittery I am about dental work and how I don't want any unnecessary procedures done, despite the fact that my front tooth is broken in half and I have an enormous and painful cavity in my molar which I requested be worked on, ended up telling me that the first thing he wanted to do was an expensive and extremely painful "root planing" procedure where they would literally scrape the roots of all my teeth, not because (according to them) I really needed it, but because it would prevent me from developing the need to have it done later. I walked out and never went back! Why don't these people listen to us? They are our bodies after all! Now I look at doctors like I look at any other person selling their wares. If they aren't selling what I need, I find someone else who is or I find a way to get it myself! And even though my current GI doctor is a really great guy, very intelligent and caring and even a family friend I still feel that I need to be the one in the driver's seat because I am only one of many patients he sees, whereas I need to live with my condition every single day of my life.

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I don't know if it's from my own personal experiences, but I too agree that a person should never take the advice of their doctors on blind faith. Yes, they are the ones trained to medicine, but we are the ones living in our body. Yes, they are the ones intimately familiar with a greater store of medical knowledge, be we are far more familiar with our own personal medical knowledge. It essentially means that we need to train ourselves in the medical knowledge that relates to our body (because we don't have the time to train ourselves in all the medical knowledge), but being knowledgeable about things that affect your body and life only makes sense.

I look to doctors as guides - tour guides who can point out various bits, but if we want to know the full story, we have to go find it for ourselves. In their position, they have a unique opportunity to know more facts than we do (if they choose to, of course ;-) ), but we have the unique opportunity to best apply those facts to our own bodies. And I think there are doctors who recognize this, and work with this, though from the stories I hear, I may be relatively lucky on that front.

We always have the power to tell our doctors NO. Quite frankly, I take the belief that they must convince me that a particular course of action is the correct one. Usually, for me, the case is simple enough, I know the likely course of action going in to the office (sick for five days so I have a lung infection and need antibiotics ;-) ), but if it's not, it's up to them to explain to me why they feel that's the best course of action.

By being on boards like this, and learning the stuff we've been learning, we put ourselves in a place to do that effectively, and maybe, the more we do it, the more doctors will learn that they are not the end-all-be-all of medicine, but the patient who puts the appropriate advice into practice is.

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My doctor didn't do much for me. He just kept treating the symptoms. My Aunt told me about her Homeopathic Physician. I went to him and he did some simple blood test for food allergies. It came back negative, but, he put me on a gluten free, wheat free diet for a couple of month and I felt much better. He then told me to go back to my old eating habits and the symptoms returned. He is certain that I have Celiac Disease and said that I could have the other test if I wanted to, but I opted not to. I am just sticking to my gluten free, wheat free diet and I feel fine.

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I agree with all of you. 20 years ago I gave up on doctors and took things into my own hands. I've learned alot over those years that I wouldn't have learned otherwise. I do have to give my current doctor a gold medal though for suggesting celiac to me. I never would have thought of it on my own.

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