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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

How To Trust Doctors Again?
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Lots of people on this forum have had bad luck with doctors, and I'd like to know how you ever managed to trust another doctor again after years of misdiagnosis and hurtful comments from supposedly educated professionals. It wasn't until I gave up on doctors altogether that I tried elimination diets (on the advice of a co-worker), and found the gluten link. Over a dozen doctors, and not a single one of them even suggested a food-related cause.

After that kind of experience, how on earth am I supposed to trust them for even a simple checkup?

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Lots of people on this forum have had bad luck with doctors, and I'd like to know how you ever managed to trust another doctor again after years of misdiagnosis and hurtful comments from supposedly educated professionals. It wasn't until I gave up on doctors altogether that I tried elimination diets (on the advice of a co-worker), and found the gluten link. Over a dozen doctors, and not a single one of them even suggested a food-related cause.

After that kind of experience, how on earth am I supposed to trust them for even a simple checkup?

I can really relate to this, Kitty. I stopped going to doctors completely at the age of 38, and I wasn't exactly a regular visitor before then either.

I stopped after the last GI I saw for my excruciating stomach pain told me to seek psychiatric help because there was nothing wrong with me. He was gentle with his delivery but I was BS none the less. I was a poster child for Celiac and everyone told me I was fine.

I went to the age of 46 before I sought out another PCP. As you age, you have to have a doctor for emergencies but I do not go to the doctors every year.

The guidelines state every 1-3 years for a check-up and I go every 3 years....I mean, not one day before that 3 years is up! ;)

She is pretty good but we do butt heads on testing and screenings. I feel it is up to a patient, ultimately, to decide what is best for them, even if the doctor does not agree. I no longer will let a doctor call the shots. If I have symptoms of something, then they get to judge what I need but I am feeling pretty good overall so take charge of what I do or don't do. Sorry but after years of misdiagnosis and mistakes, I have to be in charge. So far, it has worked and she doesn't get too pissy about it so for now, it's working. But do I trust doctors again? No, I don't, but my doctor is about as good as it gets for now.

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I can totally relate. My last doctor prescribed me two medications and did not check for interactions. I ended up going to the hospital one night after they 'interacted'. Not fun. Lets just say myself and a lot of people on here could write a book about bad doctors. I think after they get out of med school they either stop learning or stop caring, or maybe a little of both, I'm not sure.

For the most part I don't really trust doctors any more. If they ever prescribe me anything now I triple check online (or with another doctor if I'm really paranoid) that it is safe to take for me. In terms of tests, I'm the one usually suggesting things to test for after doctors fail to come up with any answers (which is how I learnt I was super super low in vitamin D). Whenever a doctor gives me trouble over my eating habits and why I'm not eating certain food groups (because of intolerances that they don't believe in) I just sort of shrug it off now. After being burnt so much over the years I'm tired of leaving my life in the hands of someone else who doesn't know my body like I do.

That being said I DO trust them with annual checkups, blood pressure, general bloodwork. It's hard to mess up on stuff like that, and routine work still needs to be done to make sure something isn't obviously out of whack.

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Lots of people on this forum have had bad luck with doctors, and I'd like to know how you ever managed to trust another doctor again after years of misdiagnosis and hurtful comments from supposedly educated professionals.

I haven't managed to trust another one yet. Doubt I ever will. Fortunately except for the residual damage I have from being undiagnosed for so long my health is pretty good. I think I have had maybe one virus since I was diagnosed and do my best not to get hurt. (knock wood) I do know one thing I will NOT let any ambulance take me to my local hospital if I am consious. They couldn't even figure out my ankle was broken when even I can see the break in the x-ray to say nothing of the hell I went through with them labeling me a hypocondriac who needed psych care instead of diagnosing me before I ended up a middle aged woman in an 80 year old's body. I hope to move far enough away from here sometime soon so I don't have to worry about going there at all. Anybody want to buy a 3 bedroom house in a college city - cheap :D (well compared to the rest of the country anyway)

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I use the MD to diagnose. I find out what is wrong, if it is really extreme. I go home and find a natural way to deal with it or wait.

Seriously, five years ago I almost died, but was still unwilling to see an MD. If they can't help me when I know something is wrong, how can they help me when I don't. Natural means has brought me a long way, but I did need the help of my chiropractor immensly. I was dying inspite of everything I could do with my diet and herbs.

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i was a hypo for years and years then i found a doctor... resident who was determined to figure out what was wrong with me.. i told him that others had just left me with a i dont know, or a its in your head. if anyone lives near canton ny.. look up ryan garfield. he has changed my life, and gave me the diagnostics i needed

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I am sorry you are also having this problem. I am married to a physician and he is the most knowledgeable one I know. He has lived the life with me. I have suffered at the hands of many; and have been told I needed a psychiatrist many times when they didn't know what was wrong with me. I have been accused by one of diagnosing myself at a major health center. This was 25 years after being diagnosed by a gastroenterologist. I have learned that we can complain forever or be angry and the only one it hurts is ourselves. We need to be proactive and google whatever we need. Check out information on medical libraries. Physicians are humans with egos. Some keep updated on knowledge and some coast on what they learned in medical school. Unfortunately for me and others the studies have been done in the past twenty years, and are still ongoing. If you go to see a physician and you are angry , combative or accusatory they won't be as helpful. Do your research; ask how many celiacs they have treated. Do they refer to specialists that are experts in their fields? I hope I will be forgiven for telling one specialist (a personal friend of my husband) that if he sent me to anyone, in this case a dietician; who had to go in the back to read one paragraph about celiac disease I wouldn't go. Unfortunately we must be proactive and do a lot of research ourselves and yes you can do it. What other alternative do we have.

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I'm totally right there with everyone that's posted. Here is my two cents ;) WE are the customers, doctors are providing the service, therefore we are indeed responsible for our choices of their suggestions and our choice to ask for alternative tests/opinions/etc.

Growing up, my family thought of me as being such a hard nose for bossing the doctors around with what I wanted for my body. I had no other way to guarantee things would be done safley for me. Now I see I'm not the only one, nice to know there are others who are responsible and do their own research as well.

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Ditto all the above comments AND...

We try to find the most INTELLECTUALLY CURIOUS doctors we can find for our family. The doctors who don't pretend to know everything, the ones who are still interested in learning and who really listen. This has meant a lot of travel for our family. Our two Celiac doctors (one pediatric for our kids-Dr. Pietzak and my GI at UCLA-Dr. Harmon) are currently the only doctors we trust and deeply respect. We are generally finding that the doctors who are best matched for us are also active researchers in their fields.

We have a doctor who "does what we want" most of the time who we keep in the mix. He is good at requesting diagnostics I want. (He is, however, rarely right...which means I have to decode everything in my diagnostics). He is also good at writing referrals I want. And, he has answered my call from a remote part of Alaska and coached me through a really bad infection. No doubt we keep him on board--we just know exactly how to employ him and what to expect.

All that said, no, we don't trust the doctors that much. I've been more right than the doctors have been...it's often been a matter of time until I've found the right doctors to agree with my diagnoses.

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Ditto all the above comments AND...

We try to find the most INTELLECTUALLY CURIOUS doctors we can find for our family. The doctors who don't pretend to know everything, the ones who are still interested in learning and who really listen. This has meant a lot of travel for our family. Our two Celiac doctors (one pediatric for our kids-Dr. Pietzak and my GI at UCLA-Dr. Harmon) are currently the only doctors we trust and deeply respect. We are generally finding that the doctors who are best matched for us are also active researchers in their fields.

I miss Dr. Harmon - he was at UCSD before he moved to UCLA - I like his replacement, but he remains the best Celiac Doctor (IMHO). You are lucky to have him!

Dr. Harmon is the doctor that restored my faith in physicians. He takes his time and considers everything his patient says - and is extremely knowledgeable and curious to boot -- a welcome relief to those of us that went undiagnosed for decades while being dismissed as stressed, hormonal, overworked, depressed, etc.

About a year after diagnosis I had a small bowel obstruction - nothing to do with Celiac - scare tissue from hysterectomy wrapped around my small intestine and strangled it :blink: -- never thought there was a pain worse than child birth - I was wrong. At any rate had to have surgery to correct / was in the hospital for 8 days and learned that we definitely need doctors and are lucky to have them - for structural issues our western medicine is fantastic - with non-specific and nutrition issues the system is HORRIBLE -- so I research absolutely everything and consider doctors as assisting, not responsible for my health. I'll never again simply trust doctors to decide what is wrong with me, but I will trust them to help me when needed.

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It's a matter of trying to not stereotype. There's lots of bad doctors out there just like there are lots of bad contractors and bad fast food workers. But there can be really good ones too. Each person is an individual, doctors too.

It can also be a relationship with a doctor that's bad too. Like pretend you go to a new one, and you're snarky and already not trusting them on your first visit, it seems likely, unfortunately, that it will affect their diagnosis of you. Like at every point a doctor is thinking 'what could cause that', and instead of having thoughts like 'it could be them making it all up and if they just stopped worrying about it' flit into their heads and then leave, they might latch onto it.

It just can become a real problem I think because as soon as you're diagnosed as 'fine' or 'hypochondriac', then that info can get passed along in records, which can just conflate the problem. But again, if a doctor is doing their job right, they'll know that something like a diagnosis of hypochondriac is highly subjective, like so many other mental health issues.

Even though I've had my share of bad doctors, I still trust that they know more about the vast possibilities of problems I might have than I do. I might miss something, and they do often test me for things that I wouldn't really think of for myself. And I also know that I'm not subjective either. At the very least it's mindshare and a different viewpoint.

It's also easy to think that all the doctors we've seen aren't good when they fail to make correct diagnoses, but it helps me when I think that medicine isn't exact. It's people trying to figure out what's wrong with this amazingly complex human body of mine. It's not the same as someone trying to debug a computer program or something. Like that sherlock holmes thing about humans being able to solve any puzzle a human designed, but we didn't design our bodies and minds.

I suppose I also just had what I considered a really good GI visit. First time talking to him. I even learned some things from him, granted I was fishing for info. I had a ton of questions and concerns. And I suppose he said something that could be construed as hurtful, he made a comment along the lines of 'you're acting like you're worried you're dying', but it didn't bother me because he DID still answer all my questions and after that he said 'lots of people even with undiagnosed celiac disease live for many, many years in fairly good health' which is true, and let's face it and I do worry that I'm not going to heal and I'll die from celiac related complications long before I reach old age sometimes. We even had some back and forth about my questions regarding casein, but I was prepared for him to say it's not a thing, and I pulled out my reference sheet when he said 'There's some case studies but...' and I answered 'I've got at least one reference to regular studies with samples and controls', and he grabbed it and looked at it and didn't dismiss it and when I mentioned that it seems there's the possibility that I don't actually have a gluten problem but in fact it's a casein problem because the tests I got didn't differentiate between them, he then agreed with me, and told me if I really wanted to know I'd have to wait until a clean biopsy and then eat gluten again and then have another biopsy, to which I said 'no way!'. I mean, it sucked that he wasn't up on his research fully, but I just don't expect them to be up on research that's less than, oh, 5-10 years old. And he did know of the possibility, just not that it had been scrutinized as much as it had been already.

We had conversations. I LIKE that he had counters and was forthright and explanatory with his knowledge to my concerns instead of 'oh you don't have to worry about that'. He doesn't have to like me, and he can think I'm worried way too much, but as long as he can inform me and not brush me off and as long as he listens to my concerns and believes me, he's A+ in my book.

Going to a doctor, for me, like so many others, is often stressful and I've often avoided going because I was so upset when they did basically nothing and they treat the symptom not the cause or they ignore things you tell them. But at the same time, it feels amazing when you finally do find one that does a good job. I feel like someone besides me is finally looking out for my health.

I haven't cried in a doctor's office yet, but I have cried in waiting rooms and cried after seeing them. But I've had some pretty bad signs from my new family doctor, so I can forsee it happening in the future still.

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Lots of people on this forum have had bad luck with doctors, and I'd like to know how you ever managed to trust another doctor again after years of misdiagnosis and hurtful comments from supposedly educated professionals.

While my faith in doctors in general has not been fully restored, I have been able to trust another doctor. How did I do it? I found a good one. At the time, the new (third) doc was a "necessary evil" in order to get tests to try my new theory about why I was sick. Then he turned out to be committed to helping me. Where he lacked knowledge, he did research and consulted with a doctor who had more experience in order to give me good medical advice.

It also helped that I have brothers-in-law who are doctors. Knowledgeable men who are willing to admit their own limitations. And we were out to lunch with one of them when someone at a neighboring table had an emergency and my brother-in-law humbly, but confidently, "saved the day".

After that kind of experience, how on earth am I supposed to trust them for even a simple checkup?

Honestly, I'm a little grateful for my newfound disillusionment with doctors. I think I trusted them too blindly before. I was so eager to have answers that I would believe anything my doctor said. If I need to see a doctor now, I will. But I will do it with caution, knowing they aren't infallible.

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