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Likelihood of Celiacs

ZenGrowing

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ZenGrowing Rookie
ZenGrowing
Posted

Hello.  I'm new here.  I realize this is probably something that's asked way too often, but waiting is difficult.  For the past three months it has felt as though my IBS has gone insane, and I've had fatigue, confusion, and general inability to function for the pain.  On a hunch I started eating gluten free for two weeks before my doctor had a Celiac panel run. It came back positive with these results.

GLIADIN IGA AB (DEAMIDATED) 153.7 UNITS <20 UNITS H
STRONGLY POSITIVE
GLIADIN IGG AB (DEAMIDATED) 99.8 UNITS <20 UNITS H
STRONGLY POSITIVE
TISSUE TRANSGLUTAMINASE IGA AB 92.5 UNITS <20 UNITS H
MODERATE TO STRONG POSITIVE
IGA 195 mg/dL 70 - 400 mg/dL

 Now I'm back to eating gluten and awaiting biopsies next week.  It's been an interesting slog.  With these results, how likely is it that I have Celiac's?  At this point I'm almost hoping I do just so that I can do something to help myself.  Can I go gluten free immediately after the biopsies are over or must I await the results?  Any words of advice from those more experienced?  How much gluten should I be eating before the biopsies?

Thanks for your help!

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, ZenGrowing said:

Hello.  I'm new here.  I realize this is probably something that's asked way too often, but waiting is difficult.  For the past three months it has felt as though my IBS has gone insane, and I've had fatigue, confusion, and general inability to function for the pain.  On a hunch I started eating gluten free for two weeks before my doctor had a Celiac panel run. It came back positive with these results.

GLIADIN IGA AB (DEAMIDATED) 153.7 UNITS <20 UNITS H
STRONGLY POSITIVE
GLIADIN IGG AB (DEAMIDATED) 99.8 UNITS <20 UNITS H
STRONGLY POSITIVE
TISSUE TRANSGLUTAMINASE IGA AB 92.5 UNITS <20 UNITS H
MODERATE TO STRONG POSITIVE
IGA 195 mg/dL 70 - 400 mg/dL

 Now I'm back to eating gluten and awaiting biopsies next week.  It's been an interesting slog.  With these results, how likely is it that I have Celiac's?  At this point I'm almost hoping I do just so that I can do something to help myself.  Can I go gluten free immediately after the biopsies are over or must I await the results?  Any words of advice from those more experienced?  How much gluten should I be eating before the biopsies?

Thanks for your help!

I am NOT a doctor, but my input?  You have celiac disease!  A biopsy will confirm and establish a good baseline.  It will rule out other issues you might have in addition to celiac disease.  You can go gluten-free as soon as you get the biopsy results, but with antibodies so high, you could go gluten-free right after the procedure (usually until all testing is done in case your results were botched or misplaced, but talk to your GI).  Just keep eating a slice of bread or equivalent a day until the endoscopy.  

Now...you can start your research on going gluten free safely.   Read our Newbie 101 tips under the  "Coping" section.  Then encourage your first degree relatives to get tested.  celiac disease is genetic with gluten being the trigger for a flare-up.  

GFinDC Veteran
GFinDC
Posted

Hi ZenGrowing,

Your antibody test results are pretty high.  Even if they don't find the villi damage on the endoscopy I'd say you have celiac disease.  Being not a doctor in real life, I doubt your insurance company wilt take my word for it though.  But it's pretty hard to explain antibodies like the DGP IgG without celiac disease.

You should definitely keep eating some gluten each day until all testing is done.  You can check out the Newbie 101 thread in the Coping With section for some tips.   As far as how likely it is you have celiac, I'd guesstimate 100%.

Welcome to the forum! :)

ZenGrowing Rookie
ZenGrowing
Posted
  • Author

Thank you.  That's reassuring.  It isn't that I want to have Celiac's; I'm just so tired of having diagnoses and illness that don't respond to the medications offered.  I've had all these different things going on for years and regardless of how they're addressed, they persist or they're periodic. I actually saw some improvement in the two weeks I was gluten free, and to think that might finally be the correct answer is just huge.

I did read the Newbie 101 thread.  It was very helpful.  I've also begun all the other research.  One big bummer is that apparently most licorice contains gluten, but I will prevail! I found a gluten free option at Gimbal's.

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      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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