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

Doctor Visit, Finally A Good Doctor


JaneWhoLovesRain

Recommended Posts

JaneWhoLovesRain Enthusiast

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

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

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

mushroom Proficient

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

JaneWhoLovesRain Enthusiast

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

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.

  • 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. - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    2. - Theresa2407 replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

    3. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    4. - Scott Adams replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

    5. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

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

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

    • Total Members
      133,261
    • Most Online (within 30 mins)
      7,748

    Joanne Ham
    Newest Member
    Joanne Ham
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
×
×
  • 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.