Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Any Good Doctors Left ? - Just Horrible


motif

Recommended Posts

motif Contributor

Just came back from the doctor totally frustrated - how they're getting their diploma? :o

I told him all my symptoms and he said it's not possible that I had symptoms all over body,

that I read too much internet and impose on myself sickness...

Then I have to suggest him maybe I have spine problem or celiac, so he gave me referral for blood test,

then I ask does it test also for B12 level? He said no, if you want I can add this too to the test...

can you believe this? I have to tell him what possible test to do! And he still gets irritated that I read internet and know something about my symptoms.

Anyway, it's horrible they know nothing, they don't listen to me when I describing my symptoms, they don't try

even to figure out from it what is the cause, all they know is writing drugs prescription which will kill you anyway sooner or later from side effects...No doctor helped me ever to be honest.

I just want to thanks for forums like these, because I can get more information and support here then from so called doctors...


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



Celiac.com Sponsor (A8-M):



tom Contributor

I feel for ya motif. Went through some of the same myself.

It could be laughable if it weren't so terrible & potentially harmful.

There seem to be several horrible Dr posts EVERY week here.

I told him all my symptoms and he said it's not possible that I had symptoms all over body, that I read too much internet and impose on myself sickness...

The nerve!!

Then I have to suggest him maybe I have spine problem or celiac,

I meant to say earlier - nerve issues, like peripheral neuropathy are awfully common in advanced celiac cases.

Besides tingling & numbness, I had a long stretch where, even tho lying down, I'd suddenly feel like I stepped on a tack, for instance.

Mine went away w/ gluten-free, tho slower than the intestinal problems.

I keep wondering what country you're in. (Hope I'm not guessing wrong) France? Europe anyway?

MDRB Explorer

Yep, I feel for you.

I think this is a really common experience for a lot of people on this forum. I went through 8 years (still a lot shorter than some people) of doctors telling me that I had some unknown virus, or was depressed, or there was nothing wrong with me.

I diagnosed myself with a little research (being a nurse helped) before going to my doctor and demanding blood tests and an endoscopy.

There is a solution to your problem: FIND A NEW DOCTOR!!!!

Take your health in your own hands and demand nothing less than their full attention.

Good luck :)

motif Contributor
I keep wondering what country you're in. (Hope I'm not guessing wrong) France? Europe anyway?

Tom,

I live in US 10 years already, but originally from Europe.

I had same bad experiences in both places though.

Because of that I ended up studying myself alternative medicine and only go to doctor for e.g. X ray referral etc.

In my opinions and many others 90% of physicians are useless and even dangerous.

4 years ago I thought I was almost dying and nobody knows why (now I know it could be because celiac disease), even they did catscan they have no clue what is wrong. Then I started googling internet for alternative cures, first what I found was the oldest and the best method for everything which is enema. After a month of treatment I was like newborn, fresh and young...Why any of the so called doctors couldn't suggest that to me?

motif Contributor
There is a solution to your problem: FIND A NEW DOCTOR!!!!

thanks, but I don't need other doctor, have tried too many. I need them only for lab tests anyway...

Even interpretation I do myself.

MelliDuff Rookie
thanks, but I don't need other doctor, have tried too many. I need them only for lab tests anyway...

Even interpretation I do myself.

rofl that is exactly how I feel! :lol:

Archived

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

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

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.