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

Went For My Follow Up Yesterday!


coffeetime

Recommended Posts

coffeetime Explorer

In Nov my brother was diagnosed with celiac and we were advised to be tested. My old Dr. refused since I "looked healthy" so I called my gyn and she ran the test for me. I posted my results on this board several in Dec and got wonderful feedback while I was waiting for my follow up with my new Dr. yesterday. She was wonderful. 2 days a month she accepts new patients and spends about an hour with each and had actually read over the paperwork I had filled out and sent in.

On to the important stuff--I am gluten intolerant and she actually said "Look the test is positive, we can do the biopsy if you want celiac as a diagnosis and it may or may not be positive depending on many factors. The treatment is the same--give up gluten!" No surprise after reading these boards for awhile.

The surprise however for me was the fact that the nurse in the gyn office had marked the wrong DNA test and the test used for lupus came back positive! She is running an ANA test to see where I am. The other surprise was when they ran the EKG and my resting heart rate was 45 bpm (and I'm definitely not a high performance athlete.)

I know from the boards that there is often a link between lupus and celiac-has anyone had experience with this and/or a very low resting heart rate? Since both are inflammatory conditions do you think the diet will help me from getting flare-ups? Thanks in advance for any help.


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



Celiac.com Sponsor (A8-M):



coffeetime Explorer

I also forgot to ask about vitamins--Does anyone have any recommendations? I figured from what I've read the B vit would be good, but I don't know what else.

Thanks.

In Nov my brother was diagnosed with celiac and we were advised to be tested. My old Dr. refused since I "looked healthy" so I called my gyn and she ran the test for me. I posted my results on this board several in Dec and got wonderful feedback while I was waiting for my follow up with my new Dr. yesterday. She was wonderful. 2 days a month she accepts new patients and spends about an hour with each and had actually read over the paperwork I had filled out and sent in.

On to the important stuff--I am gluten intolerant and she actually said "Look the test is positive, we can do the biopsy if you want celiac as a diagnosis and it may or may not be positive depending on many factors. The treatment is the same--give up gluten!" No surprise after reading these boards for awhile.

The surprise however for me was the fact that the nurse in the gyn office had marked the wrong DNA test and the test used for lupus came back positive! She is running an ANA test to see where I am. The other surprise was when they ran the EKG and my resting heart rate was 45 bpm (and I'm definitely not a high performance athlete.)

I know from the boards that there is often a link between lupus and celiac-has anyone had experience with this and/or a very low resting heart rate? Since both are inflammatory conditions do you think the diet will help me from getting flare-ups? Thanks in advance for any help.

nora-n Rookie

I just reat at the delphi celiac forum today that someone cited that her doctor said that about 40% or was it half of celiacs have postive ANA and that one needs more test to decide if it is lupus. The positive ANA is a celiac thing.

vitamins--get the D tested. Typically low in celiac. Vitamin D is important re. autoimmune diesases, it normalizes the immune system.

Archived

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

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

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.