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

Bloodwork Back, Inconclusive - Now The Biopsy.

MrsC

Recommended Posts

MrsC Rookie
MrsC
Posted

So, my results from the celiac panel came back "inconclusive" and my primary care doc is sending me to the specialist. FINALLY!

But, the specialist called and said that I should not have been put on gluten free until I saw him, so I have to go back to a regular diet.

It's only been 1 day, and I already feel terrible again.

Anyone else go thru something similar?

My appointment is on June 13th, and I am a little scared about the procedure.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Yep, same for me. Inconclusive bloodwork, six weeks gluten challenge, inconclusive biopsy, probably due to so long off gluten and not enough of a challenge.

Ended up getting tested by Enterolab.

No reason to be afraid, I can't remember a thing about the procedure, except that I had a good excuse to sleep a lot for an afternoon!

If you were off gluten for a long time, your gluten challenge may be too short.

MrsC Rookie
MrsC
Posted
  • Author

Thanks. I love this website :)

I had only been off gluten for 1 week and 6 days. And back on with a vengance (sp?) Started out with pizza for dinner weds nite, bagels for breakfast yesterday, stuffed bread for dinner tonight.

I am paying for it though - stomach pain, bloating, poopin problems galore, etc. etc.

Any advice for what I should do until June 13th? Eat more than I normally would? I mean I don't want to make myself sick, but I do, you know? I want that biopsy to be for real.

CarlaB Enthusiast
CarlaB
Posted

If you were only off it for two weeks, then you should still have plenty of damage ... so I'd keep eating it, you should still get an accurate biopsy. Make an easy schedule for yourself, 'cause you'll be tired! Eat a Big Mac for me! Someday I am going to Findland for a gluten-free Big Mac! :D Be sure they take enough biopsies ... I don't know how many is enough, maybe someone else will chime in, and be sure the lab knows what they are doing ... again, maybe someone else can chime in.

penguin Community Regular
penguin
Posted

Me too! Your gastro appointment is 2 days before mine!

I've been gluten-free for 4 months, back on gluten a week. I feel like crap, but at least it tastes good! Remember that you have to keep up eating like, 4 slices of bread or the equivalent a day.

KaitiUSA Enthusiast
KaitiUSA
Posted

Remember a biopsy will rule celiac in but not out. If there is sporadic damage then they can miss it. Please keep this in mind. You should also not be gluten free until after testing.

MrsC Rookie
MrsC
Posted
  • Author

Ok CarlaB - Big Mac today just for you!!!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

regardless of the results of the biopsy, PLEASE try the diet after the testing is complete. And while you are pigging out on gluten, have a Krispy Kreme donut (or two) for me and let me live vicariously through you!!!

CarlaB Enthusiast
CarlaB
Posted
:D Thank you for the Big Mac; I will enjoy even the thought that someone is eating one for me :D
nursestherapies Rookie
nursestherapies
Posted

Pizza for me please!! Karen

Guhlia Rising Star
Guhlia
Posted
If you were only off it for two weeks, then you should still have plenty of damage ... so I'd keep eating it, you should still get an accurate biopsy. Make an easy schedule for yourself, 'cause you'll be tired! Eat a Big Mac for me! Someday I am going to Findland for a gluten-free Big Mac! :D Be sure they take enough biopsies ... I don't know how many is enough, maybe someone else will chime in, and be sure the lab knows what they are doing ... again, maybe someone else can chime in.

Wait a second... Are you saying that somewhere has a gluten free Big Mac or are you saying that you're going to find one someday??? Cuz if there's a gluten free Big Mac somewhere, then I want to know about it before planning this years vacation!!! :)

slpinsd Contributor
slpinsd
Posted

ChelsE- you are going back on gluten? what happened? I thought they gave you a Celiac diagnosis. Doctor wants me to go on a gluten challenge and redo my biopsy--but I don't want to. How long will your challenge be?

CarlaB Enthusiast
CarlaB
Posted

Helsinki, Finland is the place to go for a gluten-free Big Mac according to Dr. Greene.

If they found damage to your intestine the first time, personally I would not do a gluten-challenge for the doc to feel better about the diagnosis. If there was damage and a positive dietary response, I just wouldn't suffer through it.

penguin Community Regular
penguin
Posted
ChelsE- you are going back on gluten? what happened? I thought they gave you a Celiac diagnosis. Doctor wants me to go on a gluten challenge and redo my biopsy--but I don't want to. How long will your challenge be?

I had inconclusive bloodwork (only IgG was high) and an ok dietary response, and my PCP dx'ed me based on that. My mom's been harassing me about getting a colonoscopy done and full work up la-ti-da. I never got a biopsy, so I figure that as long as they're sticking tubes in places they don't belong, they may as well do a biopsy. Also, if I'm going to have celiac on my record forever and have trouble with insurance, I want to make sure that's what's wrong with me.

I'm eating all the gluten I can stand for 3 months. My first appt with the gi is June 15th. I'm stoned all the time, gained 8 lbs. in a week, and feel like the Stay-Puft man, so so far so good. :rolleyes:

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,310
    • Most Online (within 30 mins)
      7,748
    Scatterbrain
    Newest Member
    Scatterbrain
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • oyea
      Neuropathy still after 4 months gluten-free.. help

      By oyea · Posted

      I was not diagnosed with celiac disease, but am gluten-intolerant. I have been gluten free for almost 10 years. In April of this year (2025), I got a steroid shot. I have been able to eat sourdough bread before with no problems. After the steroid shot, I developed gluten-neuropathy, and I could no longer eat sourdough bread, and now the neuropathy returns with small amounts of gluten.  I also get POTS (Postural Orthostatic Tachycardia Syndrome) when I eat gluten. My heart beats so fast in the middle of the night I can't sleep. I'm usually up for hours. 
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      Anyone bothered  by chocolate and alcohol.  Found I cant drink  alcohol or eat chocolate  Anyone else
    • Jmartes71
      is my celiac disease gone?

      By Jmartes71 · Posted

      This is my current exhausting battle with the medical field. As Ive mentioned in past I was diagnosed in 1994 by colonoscopy and endoscopy and was told i was celiac and to stay away from wheat and Ill be just fine.NOPE not at all in fact im worse thanks to being disregarded and my new word that was given that fits perfectly medically gaslight for over 30 years.I was not informed by anyone about the condition other than its a food allergy. Long story short if it wasn't for this website.I would be so much worse. I have been glutenfree since 1994 and was diagnosed with many other foods in 2007. I have stayed away from those items, except dairy sometimes I'll cheat when I know I'll be home a few days.My work history is horrible thanks to my digestive issues. I had my past primary for 25 years and everything im going through, he danced around celiac disease. My last day of employment was March 08, 2023 I was a bus driver and took pride in that.I get sick easily and when covid hit me and I stopped taking tramadel to push to give my bloated body a break, I haven't " bounced " back.Though not that well before but worse now.I applied for disability because yet again I was fired solely on health, which by the way seems to be legal because no lawyer wants to help.I was denied and my primary stated let me fluff it up a bit.FLUFF IT UP A BIT?He has been my doctor for 25 years! All that Im going through was basically ignored and not put together. I switched primary doctor and seeing new gi and its EXTREMELY EXHAUSTING because they are staying all my test came back clean, good, its normal. Except THANKYOU LORD JESUS HLA DQ2 is positive that Itty bitty tiny little test of positive FINALLY VALIDATION RIGHT.No, Im still struggling and fighting its not fair
    • Joel K
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Joel K · Posted

      Since medical insurance is not affected directly by celiac disease on an ongoing basis (i.e. medication, medical devices, daily monitoring, home care nursing, etc), I rather doubt anyone would be denied a policy for having it as a pre-existing condition. I’ve certainly never been and I have two pre-existing conditions that are managed with diet alone and both are long-well-known by my doctors and via medical testing and procedures. Insurance is all about risk management, not health. 
    • Joel K
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Joel K · Posted

      Yes. And then it will become part of her medical record, which was my point.
×
×
  • Create New...