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Bloodwork Back, Inconclusive - Now The Biopsy.

MrsC

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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.

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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!!!

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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:

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      High DGP-A with normal IGA

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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