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

Misdiagnosed?

AshleyRenae
 Share

Recommended Posts

AshleyRenae Newbie
AshleyRenae
Posted
(edited)

Can someone please tell me if they have been misdiagnosed or thought they might be? what could it be if not Celiac?

I was diagnosed 10 years ago (age 18) after started to have some major stomach issues (constant diarrhea, bloating, etc) and I went strictly gluten free, we're talking full on anxiety ridden to even eat out.  I make all of my food, at first I lost a bunch of weight but have always been overweight, so I thought maybe it was doing some good, yet I still was having the issues.  Fast forward to 2016 (6 years in) and I am strictly gluten free still, dairy free, have been diagnosed with endometriosis and interstitial cystitis with a case of chronic hives (came out of nowhere no understanding of cause)....the endo was removed, I went to therapy (and still attend) based off them saying my issues were probably brought on more by anxiety....I have done everything on my part and here I am at 28 almost 29...10 years later with the same issues, same debilitating stomach problems that have stolen my 20's and Im thinking what else could it be?  I have given this disease a decade, stuck so true to it, so strict....theres got to be other options?  

Celiac does not run in my family from what we know. Any suggestions on what to ask for testing wise? or if I am just going to be this way forever with a diagnosis thats untamed.

Edited by AshleyRenae
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

Get the full celiac panel done to see if you have been completely gluten free. For some less than 20ppm gluten isn't good enough. All of the celiac numbers should be at normal levels.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

Has your gastroenterologist done an endoscopy lately to see if you are all healed?

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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. Jmartes71
      - Jmartes71 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      4

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Thankyou I did reach out to a dietitian from this website and since popular there's a bit of a wait at first, My appointment I believe is in June on zoom.Going in to see pcp about medication im having a reaction from, told neurologist and she said its a common affect so need to ck and see if thsts through case this afternoon. This nightmare could easily been...
    2. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Is it gluten?

      Thanks for the reply.
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Product Labeling Regulations
      2

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      You’re raising a very real and very well-documented problem, and you’re absolutely right to be frustrated. Medication labeling is a major blind spot for people with celiac disease, because unlike food, drug manufacturers are not required to clearly disclose the source of binders, fillers, or excipients—even when they may be derived from wheat. That puts ...
    4. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      nothing has changed

      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 c...
    5. Scott Adams
      - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Is it gluten?

      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.
  • 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
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      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
      Is it gluten?

      By Scott Adams · Posted

      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
      Trip to Anaheim/Disney

      By Seaperky · Posted

      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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      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.