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

Doctor Visit, Finally A Good Doctor

JaneWhoLovesRain

Recommended Posts

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

I finally has my appt with the GI doctor this week. I made the appt in November right after I found I tested positive for the gene and this was the first available so it's been a wait!

He couldn't have been nicer, I don't think I have ever had a doctor who sat there and took the time to patiently listen and ask questions as if he had all the time in the world. He even looked with interest as the pictures of my rash, which is the total opposite of what my pcp did. I was impressed!!

He feels the likelihood of me having celiac is 80-85%, or maybe he said 90%, but it's up there. The only thing that didn't fit was the fact that the rash was BEHIND my knees, rather than in the FRONT, but all the other rash spots fit, elbows, shoulders, hips, neck, symmetrical, etc as did other gi symptoms and my vertigo/off balance issues. And thank God, he said the pictures do not look like scabies. He sent me for blood work - I'm not sure what, I assume the basic celiac stuff, but I trust him enough so that I did not have to write it down and come back google to be sure it is what it needs to be. He wanted to take it even though I have been gluten-free for some time, he said he has seen blood work come back positive when people have been gluten-free so maybe mine will. And I did do some gluten experimenting over the Christmas holidays so maybe the blood will show something. In any event, he told me no more experimenting, no more gluten, none. He also wants me to have an endoscopy and colonoscopy (been 7-8 years since the last). Not looking forward to either of these. Meanwhile, I have to have a breast biospy in the beginning of Feb and that is more or less taking front seat to the celiac stuff. He was even nice about that and told me that certainly takes precedence and the scopes can wait and to be sure and let him know what it shows, and good luck, etc. I was diagnosed with bc almost 10 years ago, very tiny and early, now something else has shown up and I am more than a little anxious about this.

All in all, it was an excellent appt and I am glad someone finally listened to me and believed me instead of blowing me off.

Jane

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

Celiac.com Sponsor (A8-M):


jlaw Apprentice
jlaw
Posted

That's great Jane. So nice to hear a positive report! Keep us updated, anxiety over up coming tests is really not my strong point, I can understand your nervousness. Best of luck.

IrishHeart Veteran
IrishHeart
Posted

That's great Jane. Did you go to Dr. Gusten as I suggested? just curious.

mushroom Proficient
mushroom
Posted

A doctor who listens :wub: How great to find someone like that. So glad for you.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted
  • Author

That's great Jane. Did you go to Dr. Gusten as I suggested? just curious.

Yes, IrishHeart, that is who I saw. Thank you for giving me his name. I can see why you like him so much. Too bad there aren't more doctors like him.

Jane

IrishHeart Veteran
IrishHeart
Posted

I told you! He's the man. :wub:

I have sent 8 people to him. & 6 were celiacs. One had ulcerative colitis, one "possible celiac" ---but certainly

NCGI.

I am so glad you finally decided to go. He is one of a kind.

He " gets it". They are very good about giving you the lab test results in that office. Ask Michelle to print them off and take them with you when you go back for your return visit.

You are in GREAT hands now.

Best wishes with your breast biopsy. I, too, have been down this road.

My thoughts are with you.

Archived

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

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


  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748
    melindakathleen
    Newest Member
    melindakathleen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...