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Likelihood of Celiacs


ZenGrowing

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ZenGrowing Rookie

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
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

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

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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      @Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.
    • trents
      @NoriTori, "gluten intolerance" is a general term that can refer to either celiac disease or NCGS. NCGS is often referred to as "gluten sensitivity" for short. Though, admittedly, there is still a great deal of inconsistency in the use of terms by the general public.
    • NoriTori
      @trents A gluten intolerance is a real possibility! I never ruled it out, but am keen on finding out the EXACT cause. I'd want testing done again to be sure it's not celiac, or SIBO (which I've considered) or other digestive disorder. Celiac seems the most pertinent considering its implications.
    • sillyac58
      Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support! 
    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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