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

Must I Have The Biopsy?


CindyK

Recommended Posts

CindyK Rookie

Hi There! I am new to the world of gluten intolerence and to message boards. I am 35yo and have just had the gluten intolerence blood work. My results were psoitive for gluten intolerence and I have been gluten-free for two weeks. I feel so much better. I could go on and on about that but I'd be preaching to the choir! I am wondering if I really must have the biopsy? My PCP who did the blood work has not even mentioned it. She simply told me to avoid gluten. I have to say I have had symptoms for as long as I can remember. I have had an IBS diagnosis since I was a teen. I was diagnosed with Hypothyroid this year. I bring that up because I was suprised to learn there is a relationship between thyroid idease and Celiac. Anyhow, I really don't want to have the biopsy. I had a colonoscopy 6 years ago and don't want to do anything like that agian unless I really, really have to. Any suggestions?


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



Celiac.com Sponsor (A8-M):



catfish Apprentice

Wow, your situation sounds exactly like mine two moths ago except for the thyroid and the fact that your PCP hasn't mentioned the biopsy yet.

The first thing my doc mentioned was the biopsy. I beat him to the punch by going gluten-free for the weeks prior to my next visit. Like you, I will avoid invasive procedures at almost any cost. The way I figure, if not eating gluten makes me feel better, then who really gives a fig what the biopsy says? The biopsy is, literally, the "gold standard," and that is even the term my doctor used while trying to persuade me to get it done, but the fact is that it is not definitive, and as with all procedures there is always some risk associated with it. For one thing, if you want to have the biopsy done then you will need to eat gluten for several weeks prior to the procedure. I already know that you won't want to do that since you are feeling so much better. What I decided to do was to continue the diet to see whether I continued to improve or not- I'm not 100% better yet you see, but I am getting better every week so far. I have a follow up visit in a few months to see how I am progressing. This wasn't my doctor's first choice, but it isn't my doctor who is suffering. Remember that it is YOUR body and only YOU can decide whether to have any procedure done. I think the biopsy is going to need some serious re-examinations in the near future because it seems to me that it is something of a dinosaur. I feel that we should be able to do without it in most cases.

CindyK Rookie

Hi Catfish! Thank you for the reply. You helped validate my thoughts and feelings about the biopsy. I do not want to add gluten back in my diet just to have an uncomfortable medical procedure. I was not even aware of that part of it! We do sound very similar. Especiallly regarding the biopsy issue! I hope you continue to feel better.

tarnalberry Community Regular

I opted to go only on inconclusive test results followed by a dietary challenge, and don't plan on getting a biopsy.

flagbabyds Collaborator

Dietary improvements are a test in itself, also bcause you hve beeen gluten-free you would have to go back on gluten before you have tohe biopsy which is probably something you never want to to again, it is your body and you make the ddecesions whatever you feel is right is what you should do.

eternity Explorer

I have three sons that tested positive. I opted not to do the biopsy for them since they tested positive for the endomysial antibody which is 98% accurate for celiac. I didn't want them to have to wait to feel better or go through the risks associated with biopsy.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    2. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    3. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    4. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    5. - trents replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Finding gluten free ingredients


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
×
×
  • 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.