Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How To Trust Doctors Again?
0

12 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,880
    • Total Posts
      919,453
  • Topics

  • Posts

    • Celiac - How many symptoms can there be?
      Do you take digestive enzymes and probiotics? That may help. Have you met with a dietician for help figuring out how you're getting glutened?
    • Depression / anxiety issues
      You should read the book' Jennifer's Way" you might find her story similar.  You will find better health- but be patient- it's an up and down road and takes a long time! For me it's been 7-8 months and I'm not well but slowly improving I hope
    • Celiac - How many symptoms can there be?
      Hi Everyone I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work.  Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms - Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest. I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination.  In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms: Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
      . I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms: Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side.  I will be seeing the GI doctor in August; but I am hoping to see him sooner Any input in reference to symptoms is appreciated.    
    • Depression / anxiety issues
      Hi all  10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   
    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,922
    • Most Online
      1,763

    Newest Member
    Barsch
    Joined