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

Biopsy was positive, blood work negative...

ChooseJoy

Recommended Posts

ChooseJoy Newbie
ChooseJoy
Posted

I need help! I have been struggling for three years with various symptoms: extreme bloating, hours in the bathroom, headaches, fatigue, skin problems, stomach pain,  joint pain, etc... My doctor wanted to do a scope to see what was going on (before any blood work, weird). I was so fed up with feeling sick I agreed. Biopsy confirmed bad acid reflux, hiatal hernia and celiac disease. After these results the doctor wanted to do the celiac panel blood work to confirm. The blood work came back negative, but my genetic testing was positive. The doctor said I do not have celiac disease because the blood work was negative. I am confused though because I have friends with celiac disease and I have heard that biopsies are the "gold standard" for diagnoses. I have started a gluten free diet, but just wondering if the doctor got the wrong diagnosis? I am not being strict with cross contamination and still am having issues, just not as extreme as before. 

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted

Hi Joy,

Welcome!

In a nutshell: your doctor is wrong, you you right. Biopsy is the gold standard, and the biopsy showed you have celiac.

You need to take your diagnosis seriously and work to avoid cross-contamination.  You also need to advise your family of your diagnosis because celiac is hereditary. Also, you might want to look into getting a new doctor.

squirmingitch Veteran
squirmingitch
Posted

And get your records!!! 

cyclinglady Grand Master
cyclinglady
Posted

Other things can cause villi damage:

Open Original Shared Link

Were you gluten free at the time of your blood draw for a celiac blood panel?  Exactly what tests were given?  You might not have had the entire panel.  The TTG test is good, but does not catch al celiacs.  What does your doctor say?   Consider a second opinion.  

If you wish to be gluten free...it is all or nothing.  So, watching for cross contamination is critical.  

ChooseJoy Newbie
ChooseJoy
Posted
  • Author
19 hours ago, SLLRunner said:

Hi Joy,

Welcome!

In a nutshell: your doctor is wrong, you you right. Biopsy is the gold standard, and the biopsy showed you have celiac.

You need to take your diagnosis seriously and work to avoid cross-contamination.  You also need to advise your family of your diagnosis because celiac is hereditary. Also, you might want to look into getting a new doctor.

Thank you. I asked him about the cross-contamination and he said "it's not that big of a deal". I am looking for a new doctor!

 

ChooseJoy Newbie
ChooseJoy
Posted
  • Author
15 hours ago, cyclinglady said:

Other things can cause villi damage:

Open Original Shared Link

Were you gluten free at the time of your blood draw for a celiac blood panel?  Exactly what tests were given?  You might not have had the entire panel.  The TTG test is good, but does not catch al celiacs.  What does your doctor say?   Consider a second opinion.  

If you wish to be gluten free...it is all or nothing.  So, watching for cross contamination is critical.  

This is good info. They at first thought I had Chron's but that all tested negative. I was not gluten free at the time of the blood panel. I called to see exactly what was tested in the blood draw, but still have not heard back. I had an endoscopy, colonoscopy and the "celiac panel" blood draw plus the genetic testing.

It's all confusing because for two weeks before the blood draw, going off of the positive biopsy results they kept saying I have Celiac Disease. After the blood draw results came back negative they said you do not have it, you are probably non-celiac gluten intolerant you can go gluten free but do not worry about cross-contamination. My genetic testing was positive, but I know that can be positive without the disease being active.

I might just need a new doctor and a second opinion. :(

cyclinglady Grand Master
cyclinglady
Posted

Get your celiac blood panel results from your doctor and make sure you had the entire panel.  This is the entire panel list:

Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
Why do do I push for the entire panel?  If my doctor did not order the entire panel, my diagnosis would have been missed.  I test negative to the TTG tests even on follow-up testing (post severe glutening).  
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      132,532
    • Most Online (within 30 mins)
      7,748
    jimploszay
    Newest Member
    jimploszay
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scatterbrain
      Supplements for those Diagnosed with Celiac Disease

      By Scatterbrain · Posted

      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
    • Jmartes71
      Shingles - Could It Be Related to Gluten/ Celiac

      By Jmartes71 · Posted

      Yarrow Pom works really well with the skin issues I found out.I had to stop so my doterra because dealing with medical celiac circus. I had shingles in Feb 2023. Prayers for healing 
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      More great tips, and a good excuse to shop at M&S and also buy more iced buns!   I wish we had an ASDA near us, as the few times we've been to one their gluten-free pasta range seemed very reasonably priced compared to other shops.  Thanks so much, @Russ H.
    • Russ H
      Shingles - Could It Be Related to Gluten/ Celiac

      By Russ H · Posted

      I hope you are on the mend soon. About 1 in 5 people who contracted chicken pox as a child go on to develop shingles in later life - it is not uncommon. There are 5 known members of the herpes virus family including chicken pox that commonly infect humans, and they all cause lifelong infections. The exact cause of viral reactivation as in the case of shingles or cold sores is not well understood, but stress, sunburn and radiotherapy treatment are known triggers. Some of the herpes viruses are implicated in triggering autoimmune diseases: Epstein-Barr virus is suspected of triggering multiple sclerosis and lupus, and there is a case where it is suspected of triggering coeliac disease. As to whether coeliac disease can increase the likelihood of viral reactivation, there have been several cohort studies including a large one in Sweden suggesting that coeliac disease is associated with a moderate increase in the likelihood of developing shingles in people over the age of 50. US 2024 - Increased Risk of Herpes Zoster Infection in Patients with Celiac Disease 50 Years Old and Older Sweden 2018 - Increased risk of herpes zoster in patients with coeliac disease - nationwide cohort study
    • Russ H
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Russ H · Posted

      BFree bread is fortified with vitamins and minerals as is ASDA own-brand gluten-free bread. All the M&S bread seems to be fortified also.
×
×
  • 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.