Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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. - CJF replied to CJF's topic in Traveling with Celiac Disease
      4

      European travel with Celiac Disease

    2. - Oldturdle replied to CeliacPI's topic in Related Issues & Disorders
      7

      Lymphocytic Colitis with Celiac

    3. - Scott Adams replied to maryannlove's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Yasso frozen yogurt bars - be careful

    4. - Scott Adams replied to cristiana's topic in Traveling with Celiac Disease
      1

      UK Visitors: Award Winning Flapjackery in the West Country (and Chichester, West Sussex)

    5. - Scott Adams replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Frustrated


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,415
    • Most Online (within 30 mins)
      7,748

    CoachJanice
    Newest Member
    CoachJanice
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CJF
      Safely home from my recent trip to the UK. I had zero gut issues while traveling around this pretty country. Our tour leader was very good at making sure the 2 of us with gluten issues on our tour were well taken care of.  We often got our meals before the rest of the group and adaptations to the menu for us were well thought out and very tasty. I just wish restaurants here in the USA took as much pride in making food that everyone can enjoy. Many of the hotels and pubs we ate at had numerous options that were safe for us with wheat/gluten restrictions to eat.  
    • Oldturdle
      I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago.  This past spring,  I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy.  I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis.  I was asked at that time if I was still experiencing the diarrhea, and when I said yes, I was prescribed an 8 week course of Budesonide, which included the weaning off phase.  Budesonide is a steroid, but it is allegedly specific for the bowel, and has very few systemic side effects.  I must say, I experienced no side effects, except a couple little spots of persistent psoriasis went away.  I have one week of treatment left, and other than one loose stool very early in treatment, I have had no further bowel issues.  I was told that 80 percent of people go into an extensive, or even permanent, remission after taking Budesonide.  During the colonoscopy, two polyps were removed, and one was precancerous.  I know that colon cancer risks are higher in people with Celiac disease, so it was recommended that I have another coloscopy in five years.      Like your husband, I probably had untreated Celiac disease for years.  It makes one wonder if the chronic irritation and inflammation could lead to the development of microscopic lymphocytic colitis.  This disease is usually diagnosed in people over 50 years old, and occurs approximately in one out of every 1,000 people.        Incidentally, If your husband is prescribed Budesonide, it can be purchased significantly cheaper by using GoodRX.
    • Scott Adams
      Thanks for sharing this! Talk about frustrating! It is complicated enough to try to keep track of which products are safe, but the concept of the same product sold at 2 different stores--one that is certified gluten-free and one that isn't--that is exactly why having celiac disease is still so difficult, and it is so easy to make mistakes!
    • Scott Adams
      It's great that this business has celiac disease awareness and uses gluten-free oats! I wish more restaurants would make such simple changes, for example if Asian restaurants switched to using gluten-free soy sauce, many (but not all!) risks would be eliminated for lots of their dishes. My daughter works at a Vietnamese restaurant where the owner is keenly aware of celiacs, and he has made the switch to gluten-free soy and fish sauces. 
    • Scott Adams
      It sounds like you’ve been doing everything right—strictly avoiding gluten, managing food allergies, and advocating for yourself—yet you’re still dealing with severe pain, exhaustion, and other debilitating symptoms. The fact that your colonoscopy came back clear after 31 years gluten-free is a testament to your diligence, but it doesn’t erase the very real struggles you’re facing daily. It’s concerning that previous doctors dismissed your celiac diagnosis, and now you’re left fighting for validation while dealing with unexplained symptoms like eye pressure, skin issues, and relentless pain. Menopause and long COVID may be complicating things further, making it even harder to pinpoint the root cause. Are you sure your diet is 100% gluten-free? Do you eat in restaurants...if so, this can be a source of contamination. Trace amounts of gluten over time could explain your symptoms. Many people with celiac disease have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...