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

Glutened Before Biopsy?


ana

Recommended Posts

ana Rookie

I was the one who asked if a biopsy was really necessary. I had made an appointment and was chickening out because of my fear of anesthetic etc. I have to wait a while before i see the doc again so i need help from people who know.

The other problem is i really want to try the gluten free diet, but do I have to continue to eat gluten until i have the biopsy? I have been so miserable for the past few weeks with stomach cramps and pain. my consultation with the gastroenterologist is not until the end of November! he couldnt' get me in any sooner.

I also have been reading the boards here and there and It almost brought me to tears thinking this might be the answer, i've felt like a freak all my life with my stomach issues. I can't go shopping or out for any length of time because if i eat there's the bathroom issue. I just want to feel better.

my doctor isn't convinced it's celiac because my blood work shows me to be healthy, excepting the positive Glidian panel tests. (I am a careful eater, try to eat nutritiously, excercise regularly.) She forgot or hasn't looked back at my chart over the years where i was anemic, my diagnosis of IBS, had excessive nose bleeds, my skin issues, the time i lost almost all my hair, the time i came to her because i bruised so easily, or the depression for all my life. then there's my teeth. how about the 6 root canals in the past 5 years, my gums were a mess and you'd think i wasn't capable of any dental hygiene (my husband accused me of that) I've struggled with excess weight and the is another thing in her mind, you would be underweight if you had celiac. what iv'e read here, that isn't necessarily true. I'm happy to have found you all.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Ana,

Welcome to the board! I am happy you have found us.

I just have a few minutes to write, so this will be short, but I wanted to get you some information.

I'm not sure what else your doctor is looking for....you had the positive gliadin test---that is a marker for Celiac!!! What else was he expecting? The Celiac panel is to test for Celiac...no other blood work "measures" Celiac. Ugh, unforunately you are learning that doctors know little to nothing about Celiac, and often, give out INCORRECT information. Obviously, not all doctors are like this...but many are. Your blood tests indicate you have a problem with gluten. Some choose to have the biopsy, others do not.

If you are going to do the biopsy, yes, you HAVE to keep eating gluten. Otherwise you will begin to heal (if you have Celiac) and the biopsy will be WORTHLESS. Trust me, I know. My doctor told me to go gluten free before the procedure....go figure. (He knew nothing about Celiac, obviously).

Celiac has a list of numerous symptoms...ranging from asymptomatic to completely debilitating, and many include contradictions: constipation/diarrhea, overweight/underweight, etc.

Please read the book "Celiac Disease: A hidden epidemic" by Dr. Peter Green, a leading Celiac researcher/physician at Columbia Univ. You can purchase it on amazon or get it at some bookstores. It has so much thorough information and will be a good guide to help you deal with doctors who don't know anything. I use it almost daily for reference and bring it with me to all app'ts.

Also, for typical endoscopies, you will be "heavily sedated" versus general anesthia. You will be "asleep" but not "out."....I've had three :)

I hope this is a start and can help you some. PM me if there is anything else I can do. We'll help you get through this--we promise! And, ask ANY questions...its a strange disease and we have ALL been there.

Laura

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.