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

Any Info For Doctors?

kareng

By kareng
in Doctors

Recommended Posts

kareng Grand Master
kareng
Posted

Does anyone know of someplace I can get some basic info for my PCP? He doesn't know much about Celiacs but seems to go along with the things I suggest. He wanted me to go back to the GI that did my endo (surprisingly correctly). The GI knows alot about Celiacs, unfortunately, it doesn't apppear to be up-to-date or accurate. He says its just an alllegy & intestines will heal in 7-10 days. Gave no guidance on diet. Said no need to take extra vitamins the PCP prescribed due to multiple defficiencies. It would need to be something like a brochure, not too big, because he doesn't have a lot of time.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Does anyone know of someplace I can get some basic info for my PCP? He doesn't know much about Celiacs but seems to go along with the things I suggest. He wanted me to go back to the GI that did my endo (surprisingly correctly). The GI knows alot about Celiacs, unfortunately, it doesn't apppear to be up-to-date or accurate. He says its just an alllegy & intestines will heal in 7-10 days. Gave no guidance on diet. Said no need to take extra vitamins the PCP prescribed due to multiple defficiencies. It would need to be something like a brochure, not too big, because he doesn't have a lot of time.

The Celiac Sprue Association might help you with that.

Open Original Shared Link

BTW, I would be in search of a new doctor who can support my diagnosis with knowledge and expertise. Unfortunately, your experience is not all that uncommon.

kareng Grand Master
kareng
Posted
  • Author

I have talked to the local chapter & no one really has a Primary Care type Dr that knows much. I can understand the medical info but I do feel bad for people that can't research stuff themselves. I know if it were my parents, they would not question what a doctor said or ask for any specific tests. Its frustrating & tiring to have to go it alone but I think we need to learn what we can about our health.

Wolicki Enthusiast
Wolicki
Posted

Here are some good resources:

Open Original Shared Link

Archived

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

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


  • Member Statistics

    • Total Members
      129,603
    • Most Online (within 30 mins)
      7,748
    Brian Long
    Newest Member
    Brian Long
    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

    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive.  I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms. Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either. I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac? I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.
    • trents
      Found coffee or coffee pods that contain gluten

      By trents · Posted

      Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing?
    • linnylou73
      Found coffee or coffee pods that contain gluten

      By linnylou73 · Posted

      Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten
    • KimMS
      Helping child go strict gluten-free and concerns about growth/height

      By KimMS · Posted

      Thank you! Very helpful.
    • Scott Adams
      Helping child go strict gluten-free and concerns about growth/height

      By Scott Adams · Posted

      This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
×
×
  • Create New...