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

Mayo Clinic - Jacksonville


dionnek

Recommended Posts

dionnek Enthusiast

My dr. wants me to go to the mayo clinic, and I see that there is one in Jacksonville, FL. Since I live in Atlanta, I would prefer to go there, but was wondering if anyone had any insight into it (is it as good as the original?). I have confirmed celiac dx, hashimotos, raynauds, insulin resistance, and PCOS, but dr. thinks I have something else endocrynology wise going on since all my symptoms are still present after almost 2 years gluten-free (and my celiac blood tests are now normal, so I know I'm gluten free).


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



Celiac.com Sponsor (A8-M):



dionnek Enthusiast

Anyone? I don't need a celiac specialist - probably an endocrynologist. I just really don't want to go to MN!

MissCici Rookie

I don't have a recommendation, but wanted to let you know that the waiting list for Mayo in MN is very long. I've been on it for about 3 months already and they told me today it would be another 6.

Cici

dionnek Enthusiast

Thanks for the info. I talked to my dr. and when I mentioned the mayo in FL, he said "no way". He said he can get me into the MN one, but I'm not ready to bite that bullet yet (I have a new baby and a 3 year old, and live in the south, so it will be a difficult task to go up there!). I'm still thinking about it....

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,621
    • Most Online (within 30 mins)
      7,748

    kalderdice
    Newest Member
    kalderdice
    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

    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.