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

The Problem With Doctors
0

4 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

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
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,656
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined