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

Negative Biopsy

Booghead

By Booghead
in Coping with Celiac Disease

Recommended Posts

Booghead Contributor
Booghead
Posted

I had a positive blood test and and EGD done. The results came back and the biopsy was negative. I feel I do have celiacs because I have been feeling much better after going gluten free. Help?

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

Celiac.com Sponsor (A8-M):


Monklady123 Collaborator
Monklady123
Posted

I had a positive blood test and and EGD done. The results came back and the biopsy was negative. I feel I do have celiacs because I have been feeling much better after going gluten free. Help?

My philosophy is that if you feel better not eating gluten then you shouldn't eat gluten. Who cares what the test says? There are all sorts of variables on that biopsy anyway. If you feel better then don't eat gluten.

Katrala Contributor
Katrala
Posted

Can you get ahold of the biopsy? Find out the doctor's standards for diagnosis? Or the pathologist's?

Lisa Mentor
Lisa
Posted

Positive blood panel in conjunction with positive dietary result can be diagnostic as well. Welcome to the Club! :D

Darn210 Enthusiast
Darn210
Posted

My daughter's doctor would have diagnosed you based on positive blood test alone . . .

Were you gluten free when you had the endoscopy done? That would affect the results. Regardless, I have yet to see a false positve on a blood test and I have seen boatloads of negative scopes where people do well on the diet (scoping can be tricky . . . not enough samples and/or damage is patchy).

Personally, I'd call yourself diagnosed and get on with and enjoy your gluten free life . . . :D

Marilyn R Community Regular
Marilyn R
Posted

:) I had negative blood tests and negative Upper GI. You'd have to tie me up and force feed me to stick gluten in my mouth. It makes me sick, and I don't need a diagnosis to tell me that.

My 11 year old great niece has a kidney condition and my niece took her to a locally respected urologist. When the Urologist read the radiology report, he told my niece that the results reported by the radiologist were medically impossible, and referred her to a pediatric urologist and nephrologist several miles away.

My first thought was I wondered if that was the same radiologist that read my biopsy results, but it doesn't matter. It may actually be better to be undiagnosed. A while ago someone posted that they were denied life insurance due to having celiac disease.

I was pretty sure I'd be negative on both tests because I wasn't willing to do a gluten challenge. I finally found out what was sucking the life out of me on my own, and having someone with the initals M.D, behind their name really didn't need to clarify it.

So what do you do now? Do what has been making you feel better!

sandsurfgirl Collaborator
sandsurfgirl
Posted

There are no false positives on the blood tests. If your blood test is positive you have celiac. Don't let an uninformed doctor tell you differently. There are many stories on this board of people who were told by ignorant doctors they could keep eating gluten even after a positive blood test and years later they were extremely ill when they finally went gluten free.

My son's pediatrician is somewhat of an expert in diagnosing celiac. She diagnoses primarily by blood tests alone. She doesn't believe in subjecting children to endoscopy unless it's absolutely warranted.

If I remember correctly you react pretty badly to getting glutened right? If you don't have a gluten problem then it's not going to give you a reaction.

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Positive blood test and positive results from a gluten free diet sure sounds like a DX to me.

There are many reasons why the biopsy results were negative (not enough samples, biopsy from the wrong area, pathologist error, villous atrophy is not extensive YET, etc.)

Stay the course, stay well! ;)

P,S. My blood panel was NEG and my former GI doc failed to biopsy me when he did the endoscopy back in 2009 (something never explained to me, BTW) and I went downhill for another year and a half. My new celiac-savvy GI said: Your positive response to the gluten-free diet and resolution of multiple vitamin deficiencies and anemia and your long history was plenty for me. You were essentially starving to death and you saved your own life. I would never ask you to resume a gluten-free diet for biopsy. That's just insane.

I love this guy!!! :)

Chad Sines Rising Star
Chad Sines
Posted

even a positive from gluten-free alone is enough for me and many docs.

Archived

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

Go to topic listing

  • 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
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.