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 Our Content
    eNewsletter
    Donate

Grrr

nikky

By nikky
in Doctors

Recommended Posts

nikky Contributor
nikky
Posted

ok thats it ive had enough, ive read to many accounts of shody patient care and a sheer inability to look at the facts. <_<

I was lucky enough to get a good peadi GI. who knows his stuff and didnt just go 'oh we'll monitor you'

But it infuriates me to see that others of you have been less fortunate. i mean how hard can it be to listen to what we have to say. If my doctor can diagnose me with no symptoms except anemia then others should be able to get it right when presented with a patient with all the symptoms.

And then when they do run the bloodtests they run the wrong ones or not enough of them, and according to them being gluten free doesnt effect the results.. i want to know how they managed to qualify without the basic knowladge that removing the cause of the reaction stops the damage. :blink:

grr i could go on all night :angry:

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

Celiac.com Sponsor (A8-M):


home-based-mom Contributor
home-based-mom
Posted
ok thats it ive had enough, ive read to many accounts of shody patient care and a sheer inability to look at the facts. <_<

I was lucky enough to get a good peadi GI. who knows his stuff and didnt just go 'oh we'll monitor you'

But it infuriates me to see that others of you have been less fortunate. i mean how hard can it be to listen to what we have to say. If my doctor can diagnose me with no symptoms except anemia then others should be able to get it right when presented with a patient with all the symptoms.

And then when they do run the bloodtests they run the wrong ones or not enough of them, and according to them being gluten free doesnt effect the results.. i want to know how they managed to qualify without the basic knowladge that removing the cause of the reaction stops the damage. :blink:

grr i could go on all night :angry:

I second your rant!

It seems like far too many doctors quit learning when they left med school, are totally burned out, and just want to get through the day by getting the patient out of the office in the allotted 15-20 minute time frame so the day is that much closer to being over.

Are they going into medicine for all the wrong reasons or what? It just seems like patient care and wellness isn't a goal, especially when it involves a bit of detective work.

:(:angry::ph34r:

nikky Contributor
nikky
Posted
  • Author

oh and another thing they seem to think that just because your under 16 they can talk to you like your three (i find GPs are the worst for this) ggrr just because im young doesnt mean im stupid.. or that they can talk to the wall

MELINE Enthusiast
MELINE
Posted
grr i could go on all night :angry:

ok nikky we can grr together all night!!! I am one of the unlucky....Lucky you with a good doc!

itchygirl Newbie
itchygirl
Posted

Adding my "amen".

And after the patient finally manages to get dx'd, after years or decades of agony....dufus doctors, don't just hand them a gluten free diet sheet, kick them out the door and then fail to follow up when the patient continues to suffer long term complications as a result of their delayed diagnosis. Understand that years of celiac disease can take a toll on the human body, and some things (autonomic and peripheral nerve damage, pancreas damage etc. etc) may not reverse and need further treatment.

curlyfries Contributor
curlyfries
Posted

When I started having GI problems, my first instinct was not to go to my doctor. I tried to figure it out on my own. So then at one of my annual check-ups I told him I thought I had a problem w/wheat. He said, "It's probably gluten". He didn't give me any advice. Didn't order any tests. I didn't know enough to think there were any questions to ask. Seemed easy enough to me. This is just another food allergy. All I have to do is look for gluten on the labels :P. When I FINALLY figured it out and had gradually eliminated gluten from my diet, I wasn't :o about to go back for tests. I was not going back on gluten for that. When my DD started to have her own issues she went to him and said her mom thinks she has celiac and she[my DD] wanted to be tested. He got bent out of shape saying her mother can't dx herself and he wouldn't test her unless her mom did first. :o:angry::wacko:

curlyfries Contributor
curlyfries
Posted

Let me clarify something I just said. When the dr said it might be gluten, I started looking for the WORD "gluten" on labels. :lol: I thought that's all I had to do!

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,739
    • Most Online (within 30 mins)
      7,748
    gexewib
    Newest Member
    gexewib
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Feeling of Phlegm and thickness in throat

      By nanny marley · Posted

      Has anyone had any feeling in the throat like Phlegm , thick throat feeling after eating gluten ? Just wondering if this could be a symptom ?
    • nanny marley
      Feeling of phlegm and thickness in throat

      By nanny marley · Posted

      Has anyone had any feeling in the throat like plemb, thick throat feeling after eating gluten ? Just wondering if this could be a symptom ?
    • knitty kitty
      Still unsure.....

      By knitty kitty · Posted

      If you're more comfortable starting slow, that's fine, but do increase your dose to 500 mg per day as quickly as possible.  The World Health Organization recommends 500 mg thiamine HCl per day when deficiency is suspected.  Dr. Lonsdale had researched high dose thiamine for decades, and he has used higher doses, 1 to 3 grams in some cases.   Like I explained above, it's at that 500 mg level or higher that passive diffusion happens and thiamine can get into cells.  Inside the cells, thiamine turns the mitochondria back on.  Mitochondria produce energy the cells use to function.  I had been taking a multivitamin containing thiamine HCl regularly and still had become deficient.  Malabsorption of celiac disease really affects vitamin absorption.  I bought a bottle of thiamine HCl.  I was skeptical, too. I thought it couldn't be that easy.  I took 500 mg all at once.  I had improvement within minutes.  I couldn't believe the sensation of energy spreading to all parts of my body.  My brain felt like it was lifted out of a sub-sub-basement by an elevator and lights were coming on, floor by floor, of a skyscraper.  It was mental improvement, mental clarity.  Thiamine is needed for nerves to transmit electrical impulses, so the more nerves transmitting electrical impulses, the more my brain started working better.  The better my brain started working, the better I felt physically.  My muscles had more energy.  I wanted to get up and do stuff.   P.S. Questions are welcome.  "there's no poverty like ignorance, no wealth like knowledge". Keep learning!
    • badastronaut
      Still unsure.....

      By badastronaut · Posted

      Thanks! I think I'll start slow. See what happens. Should I notice the thiamine working almost straight away if I'm really deficient? What kinda of difference did you notice? More mental? Of also physical in the sense of more energy?    Sorry for all the questions! 
    • knitty kitty
      Still unsure.....

      By knitty kitty · Posted

      Absolutely no danger of overdosing on the stuff.  Thiamine is nontoxic, and safe.  I had gotten to 1000 mg of Thiamine HCl a day at one point.   Do continue taking the multivitamin with the other B vitamins.  You may want to add a magnesium supplement because magnesium and thiamine make enzymes together.  I like Magnesium l-Threonate (Neuro-Mag by life extension).  You may want to add a B Complex in addition to the multivitamin (take them at different times).  All the B vitamins are water soluble.   With Thiamine HCl, there's a "magic moment" about 500 mg, where sufficient thiamine can get into the cells by passive diffusion, and the difference is amazing.  In thiamine insufficiency, the thiamine transporters (special gates into the cell) shut down.  Thiamine cannot get into the cells until there's a higher concentration outside of the cell.  Once that happens, the  thiamine can get through and go to work inside the cells.   If you're brave, start with 300 mg at one meal and 200 mg at the next meal.  Increase as you feel comfortable.  You may want to stay at one amount for a few days before increasing again.  Just keep adding another 100 mg as long as you keep feeling improvement.  If you feel uncomfortable, skip the next dose.  Thiamine HCL is water soluble and excess is easily excreted.  Don't take thiamine close to bedtime because you may feel too energized to sleep.   Thiamine HCl may feel like riding in the back of a pick up truck on a gravel road.  Benfotiamine feels like you're in a chauffeur driven Rolls Royce.  TTFD feels like you're driving a Lamborghini.  You'll get there no matter what kind of thiamine is taking you there.  Just keep taking it.  The health improvements can be very subtle, but you'll notice in the long run.   I started with 500 mg of Thiamine HCl, to see what would happen and had amazing improvement within an hour.  I took 300 mg with each of two meals and 100 mg with snacks.  I eventually added in Benfotiamine (250 mg  a couple of times a day) and reduced the thiamine HCl.  Later I added in TTFD (50 mg) several times a day.  Just experiment and see what feels right for you. Everyone is different and has a different level of deficiency.   I kept having additional improvement with each type of thiamine.  I've taken thiamine for almost fifteen years now.  I still take all three kinds on maintenance doses.  You have to experiment and see which ones work best for you in which combination.   I'm right here if you need anything.   You'll be fine.
×
×
  • Create New...