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

New Diagnosis


Chrissie32

Recommended Posts

Chrissie32 Newbie

Greetings from the U.K. Liking this forum a lot - seems very supportive and informative.

 

I have been given a positive blood test result today and am currently awaiting a biopsy date. Am just curious about eating gluten until then...I understand I will need to have some in my system when the biopsy done but am keen to start the diet as soon as I can because I think I will struggle with it and I'll have to be disciplined!

 

I should also mention I have also been diagnosed with gallstones and a possible bile duct blockage so I don't know if this will complicate things?

 

Any feedback would be appreciated.


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



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

Hi Chrissie and Welcome to the Forum.

 

You should keep eating gluten until all testing is complete.  If you have already had the endoscopy procedure and are ONLY waiting for the results then you should be fine to stop eating gluten now, however if you still have to have the procedure then wait until it is finished.

 

Good Luck.

 

Colleen

cyclinglady Grand Master

Follow Colleen's advice which is standard Celiac protocol per the University of Chicago's Celiac website (they are one of the leading experts in the field of Celiac Disease).  

 

Do not do what I did!  Anemia was my only symptom (I attributed my craziness to perimenopause) and I was in shock about my positive celiac blood test.  "Really my husband has this and now me?  What are the odds?"  I know exactly what being gluten free was all about having dealt with it for 13 years, so I went on a binge.  I ate at every restaurant and bakery that I adored for the next seven weeks.  I ate, literally, a loaf of sourdough bread (not within my husband's sight) a day.  I ate every brand of my favorite cookies and goodies.  By the end of seven weeks, I had stomach pain (lump in stomach).  

 

My advice is to eat normal amounts of gluten until all testing is complete!  By the way, it's been a year and I feel pretty good!  No more anemia!  Back to being physically strong!  

 

 

 

Good luck!

Chrissie32 Newbie

 Thank you both for your replies. I was interested to read about the lump in your stomach cycling lady, I often have bloating in my stomach (left side) and I never thought before today that it could be celiac related! I do plan on enjoying as many foods as I can before going gluten free that's for sure!

IrishHeart Veteran

 Thank you both for your replies. I was interested to read about the lump in your stomach cycling lady, I often have bloating in my stomach (left side) and I never thought before today that it could be celiac related! I do plan on enjoying as many foods as I can before going gluten free that's for sure!

 You will still enjoy many foods if you have to go gluten-free too!

I promise! 

nvsmom Community Regular

 Thank you both for your replies. I was interested to read about the lump in your stomach cycling lady, I often have bloating in my stomach (left side) and I never thought before today that it could be celiac related! I do plan on enjoying as many foods as I can before going gluten free that's for sure!

Enjoy a cinnamon bun for me.  ;)  

 

All you need is the equivalent of 1-2 slices of bread per day, so you don't need to be excessive and make yourself too sick before getting tested.  If I was you, I would pick my favourites and eat those items until the biopsy... and enjoy the eating out without worrying about being glutened.  ;)

 

Welcome to the board.  :)

LauraTX Rising Star

If you see a probable diagnosis coming, just take this time to do your research and look up the foods you already use, what your favorite store carries, etc.  Welcome to the forum, and let us know how everything turns out! :)


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



Celiac.com Sponsor (A8-M):



Chrissie32 Newbie

I did nip into Sainsburys on my way home last night and stocked up on some of their gluten free products. Will try them out over the weekend :)

Maggie07 Newbie

Great to hear about those of you who were diagnosed, gone gluten free and now feeling better! I am struggling keeping a positive outlook while testing...it's encouraging to read about the light at the end of the cannoli (tunnel). Lol

IrishHeart Veteran

Great to hear about those of you who were diagnosed, gone gluten free and now feeling better! I am struggling keeping a positive outlook while testing...it's encouraging to read about the light at the end of the cannoli (tunnel). Lol

 

:D well, keeping a sense of humor will help tons while healing!

Hi Maggie and welcome to the forum!

Archived

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

  • 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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.