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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    3. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,125
    • Most Online (within 30 mins)
      7,748

    AndreaY
    Newest Member
    AndreaY
    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

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.