Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Doctors


Mateto

Recommended Posts

Mateto Enthusiast

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

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

Link to comment
Share on other sites
mushroom Proficient

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.

Link to comment
Share on other sites
MaryJones2 Enthusiast

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 :)

Link to comment
Share on other sites
Bubba's Mom Enthusiast

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.

Link to comment
Share on other sites
Mateto Enthusiast

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.

Link to comment
Share on other sites
codetalker Contributor

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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

Link to comment
Share on other sites
woodnewt Rookie

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.

Link to comment
Share on other sites
squirmingitch Veteran

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?

Link to comment
Share on other sites
  • 3 weeks later...
Lori2 Contributor

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.

Link to comment
Share on other sites
GladGirl Rookie

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. :)

Link to comment
Share on other sites
Stu Newbie

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.

Link to comment
Share on other sites
Gemini Experienced

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:

Link to comment
Share on other sites
Mateto Enthusiast

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!

Link to comment
Share on other sites
koz158 Apprentice

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.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,989
    • Most Online (within 30 mins)
      7,748

    DanielleMM
    Newest Member
    DanielleMM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...