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

A Good Way To Get A Good Doctor


mushroom

Recommended Posts

mushroom Proficient

:rolleyes:

:unsure:

Get yourself admitted to the hospital where they have to call in specialists for consultation. I just got home from doing this (well, actually I was admitted kicking and screaming :lol: ).

I had already decided this summer to seek out a cardiologist, and the condition I was admitted for (atrial fibrillation) required the services of such a person. I was lucky that the hospital uses an association of cardiac physicians who take it in turns to cover the hospital consults. So I got to see four cardiologists during the course of my stay. Three of them were absolutely worthless, whilst the fourth (a woman :D ) is an absolute gem. I was watching baseball on TV and she came in wearing a baseball cap, and I liked her style. I talked to her about lectins and cardiac problems, prefacing my comments/questions with "You'll probably think I'm nuts, most doctors do, but..." and she said "No, I think there's very possibly a link. I would like to talk to you more about it." :wub: at first sight :) They are out there, but very hard to find. This way I got to find out about four of them without the appointments and one-hour consultations.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Oh no, Shroomie! Glad your plan worked! :)

Hope you are doing better. Did you have to go "down the hill" or were you able to stay in the area?

jerseyangel Proficient

Sorry about the kicking and screaming part, but wow--that doctor sounds like a real peach! I hope she can help you sort this all out :)

Skylark Collaborator

Atrial fib? Wow, shroomie. I'm scared for you. :o I'm awfully glad you came out of the hospital OK. I hope you got onto some meds that have your heart rhythm under control.

mushroom Proficient

Well, it all turned out guys, that it was a lack of potassium after all, which is what I told them going in there. I told them about my prior a-fib and low potassium, and how I had been trying to penetrate the voice mail to get an "urgent" appointment with my PCP for an appt. and a prescription for potassium. Grrrrr -- I think I am going to tell my PCP that as much as I love her I am going to change physicians if she doesn't fire her P.A. This is the fourth time she has screwed me over, and she even did it again after I left the hospital, but that's another story. I was eating bunches of bananas through Tuesday on the advice of local pharmacist, trying to keep up my potassium levels, but when I went for the appointment that I finally got scheduled, she did an immediate EKG after listening to my heart and said I was in a-fib (I had been feeling lousy that morning) and was admitted through ER to ICU for three nights :o so they could monitor me. They tried all the standard heart drugs to bring me back to normal sinus rhythm, but none of them worked. I kept telling them I neeeded potassium but they said my potassium was normal on admission. I said it was just all the bunches of bananas I had been eating and I needed supplements. (May not ever eat another banana.)

Well, waddya know, they started me on IV potassium, and normal sinus rhythm returned within four hours :P . Then we had this big hassle over gluten free potassium supplements, no one could guarantee that there was no gluten in their product. So I set Dh to work on the computer and phone, and finally to our local compounding pharmacy. The pharmacist said, Forevvins sake, why don't they give her the elixir. That's how we always used to do it. So that's what got me out of there and back home. So yes, I am back at the lake, with the use of an overnight oxygenation machine for the rest of my stay, duly delivered at 7:00 p.m. (after the P.A. had failed to place the order :blink: even though she called me in the hospital and said she was doing it.) I had to call the company at 4:45 p.m. and they said they had no order. I hate that incompetent beotch. Four days of hospitalization, a cellulitis infection at an IV site (that's another story altogether), a take-home presriprtion of Keflex and probiotics plus the potassium and another heart med, which the pharmacy called and said said they can't fill untl tomorrow because it has to come from Sacto (along wth my potasium) Grrrr x 10 Stupid pharmacy clerk could not say they didn't have the stuff in stock when we dropped off the prescriptions. So will stuff down another banana tonight :rolleyes: And here I thought New Zealand medicine sucked :ph34r:

Anyway, all's well that ends well, I guess, and I have found my cardiologist :D Pity it took four days of my life :unsure: and I sure hope my insurance covers the ICU bill.:ph34r:

Skylark Collaborator

That's a hair-raising story. I'd be mad as hell at that P.A., and you might have the makings of a lawsuit for the amount of money your insurance doesn't cover from the ICU bills. If you had gotten through to your Dr. you could have avoided the hospitalization.

I'm so glad you got supplements sorted out. I'm really glad you found a good cardiologist in the process, even if it was under such terrible circumstances. I hope you recover from the cellulitis easily and your potassium stays good and steady now!

kareng Grand Master

Well, sorry to see that the practice of medicine at the lake has only gotten slightly better since I worked in P'ville. Do let the PCP know about his assistant.

For future reference, if you can take the sugar, apple juice and grape juice have lots of potassium. My oldest was haveing some problems last summer with 3 - 5 hour football workouts outside and then working at a fireworks tent. Gatorade doesn't have much Potassium.

Feel better so you can enjoy the beautiful location.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Well, sorry to see that the practice of medicine at the lake has only gotten slightly better since I worked in P'ville. Do let the PCP know about his assistant.

For future reference, if you can take the sugar, apple juice and grape juice have lots of potassium. My oldest was haveing some problems last summer with 3 - 5 hour football workouts outside and then working at a fireworks tent. Gatorade doesn't have much Potassium.

Feel better so you can enjoy the beautiful location.

Well, Kareng, don't be too quick to give the lake an undeserved bad rep - this was in Reno, at Renown Regional Medical Center where my doc practises :rolleyes: The docs at Incline Hospital gave me potassium on the first occasion and I converted quite quickly, so they got it right. :D

Interesting about the apple juice - will get some until the pharmacy gets their supplies from Sacto sometime today :ph34r:

Jestgar Rising Star

try here shroomie:

Open Original Shared Link

mushroom Proficient

try here shroomie:

Open Original Shared Link

Good link, Jess; thanks! It's a pity I can't eat a lot of those high potassium foods, but most of the high ones that are on the list that I don't have to avoid are in my diet. I have been on a different diuretic for about a year and that seems to have thrown the potassium out of whack, although I think??? they have been checking it pretty regularly. Don't have those records with me :(

Jestgar Rising Star

No chard or spinach? I thought those, at least, were on your 'ok' list. :(

mushroom Proficient

No chard or spinach? I thought those, at least, were on your 'ok' list. :(

Yeah, I eat lots of chard, but I think it is the oxalates in spinach that do a number on me :(

Skylark Collaborator

Good link, Jess; thanks! It's a pity I can't eat a lot of those high potassium foods, but most of the high ones that are on the list that I don't have to avoid are in my diet. I have been on a different diuretic for about a year and that seems to have thrown the potassium out of whack, although I think??? they have been checking it pretty regularly. Don't have those records with me :(

Diuretics can absolutely throw your potassium out of whack. Hypokalemia is a classic side effect of hydrochlorothiazide. There are combinations of diuretics designed to spare potassium. You might want to talk to your new cardiologist about changing the drugs you're on a little.

mushroom Proficient

Diuretics can absolutely throw your potassium out of whack. Hypokalemia is a classic side effect of hydrochlorothiazide. There are combinations of diuretics designed to spare potassium. You might want to talk to your new cardiologist about changing the drugs you're on a little.

Yeah, well that's what I did with a nephrologist when I was here last year and ended up in the ER with BP of 198/100 :unsure:

Had another nephrology consult in New Zealand and they concluded that what I was taking was probably the best way to go, but I am trying to think back about my potassium monitoring. Will have to send an email to my doc's nurse - those nurses in our clinic are great by the way, you can call them up and talk to them any day with no fricking voicemail and they will come in on the weekend to dress a wound or take care of cuts; they even make housecalls :wub:

P.S. I just got my prescriptions filled, and I am NOT going to take one of them - amiodarone. The contraindications for me are multiple and the side effects are horrendous, and it did not affect my arrhythmia when I was given it IV. :blink::wacko::o I will discuss it with the new heart doc as soon as I can get an appt. (she did not prescribe it).

Skylark Collaborator

I don't blame you for scrapping the Amiodarone if you're sure you have the potassium under control for the moment. I thought that stuff was a last-resort sort of medicine?

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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    3. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,251
    • Most Online (within 30 mins)
      7,748

    Kathlane
    Newest Member
    Kathlane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
×
×
  • 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.