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

Need Advice On What To Ask A Potential New Pcp


Roda

Recommended Posts

Roda Rising Star

I have been wanting to change my PCP and just now got around to calling and setting up an "appointment" (more like a visit to feel the potential new doctor out) with a different family practice physician. I'm not sick and everthing is going well, but I need a good pcp that I can feel confident with. My current PCP I am not satisfied with and have not been since my symptoms started over 3 1/2 years ago. I know the obvious things like sick visits, rx, lab results, etc. but need advice on what to actually ask the doctor.

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Well, I just winged it and went for an appointment this morning. I really liked this new doctor and her personality made me feel at ease. She was easy to talk to. I knew that she "got" celiac by a comment she made. She said something to the fact that I was lucky my blood work was positive and went on to say that there can be alot of false negatives, even in biopsy. I was impressed with that. I told her that I thought a good doctor was one who was humble enough to say they don't know everything and be willing and listen to their patients to help them figure it out. After alot more discussion, I feel like she is a good fit for me. I am going to try to get my husband to switch to her also. It will be nice to have a pcp that takes the time with you and listen, not just herd you in and out like cattle.

Wolicki Enthusiast

Roda, that's great! I had a similiar experience with a new PCP last week, an Osteopath. I simply asked how familiar he was with Celiac, and he only stopped citing examples when I told him "he passed." :D It is so comforting that my doc knows more about it than me! Yippeeee!

breavenewworld Apprentice

hi Wolicki

who is your doc

what did you go in for??

i've been going it alone for the past year besides an endoscopy (obviously couldn't do that myself) and a visit or two to some non-helpful GI's

thanks!

Wolicki Enthusiast

His name is Andrew Mielnek. He's a D.O. in Huntington Beach, with Beach Family Doctors.

Open Original Shared Link

I went in for my first patient visit. He looked at all my labs, was able to determine several issues and gave some good, no nonsense advice. My next visit I am going to ask about food intolerances. Haven't found a GI I like, but I think all they care about is endos, etc. The doctor I truly have faith in, who is very thorough and very caring is a Rheumatologist Kathy Karamalou in Newport Beach. She is amazing. Actuallu will say "I don't know" and then call one of her colleagues for an answer.

Janie

breavenewworld Apprentice

janie-

thanks!! i'm an hour north but sounds like it might be worth the drive as i can't find anyone in my area. part of me is so resistant to going to more doctor visits. it's so draining to have to explain everything and catch someone up, plus it adds to my schedule which i'm trying to clear out so i can HEAL. plus, i've gotten so much conflicting info on supplements and herbal remedies that i don't even know where to start. anyway :) have you found it necessary/helpful to visit them? what kind of tests have been helpful for you- did you get a full metabolic? have you found deficiencies in certain vitamins? other issues?

i'm so curious about everything and i've been on this site for WAY too long today :)

thanks again

Wolicki Enthusiast

I've been tested for almost everything. Vitamins, electrolytes, metabolic, kidney, heart and liver funciton. Having some kidney issues, so everything has been checked. They found the following deficiencies/issues:

secondary hyperparathryoid caused by D deficiency

hypothyroid

iron deficient anemia

b12 deficiency

Most of it has been addressed. i take Caltrate + D and 50,000 IU (presciption) Vitamin D, got 6 b12 shots along with 8000 mcg sublingual daily, took Ferrex but it upset my stomach, so I had an iron infusion.

I also take Fish Oil, B complex, multi daily.

I was sick for 10 years before diagnosis. I have an appointment with a new nephrologist tomorrow. I've had terrible edema since going gluten-free. I also developed neuropathy and restless legs AFTER going gluten-free. But, no neuropathy in 3 days! yippee!! Getting better slowly but surely!


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



Celiac.com Sponsor (A8-M):



breavenewworld Apprentice

wow that's a lot to deal with! i admire you you for being diligent with all the right tests.

sometimes reading people's health struggles on here it seems like it goes from one thing to another. i'm not sure why the body does other things after going gluten-free?? do you think a lot of us are still getting microglutened? or does our immune system switch to doing other weird stuff? or maybe it's all just issues that were created when we were on gluten.

Wolicki Enthusiast

This is just my theory: I think that our bodies are so overloaded with fighting off the gluten that the other things lurk there until your body has time to deal with it. In other words, these issues were there all along, bod was just choosing its battles.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    2. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    3. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    4. - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

    5. - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,808
    • Most Online (within 30 mins)
      7,748

    mhendy123
    Newest Member
    mhendy123
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.