Weak Positive

[Lee Nass]

Just got a series of blood work done and now waiting on results of endoscopy. Dr. said damage not visible during biopsy. What are the chances this is not celiac? My Immunoglobulin A was negative, but IGA is "weak positive," (what does that even mean) and DGA is positive. Is one test more reliable than the next? This seems like a mixed bag or results. I do feel better without gluten. It was hard to keep it up while going through testing. Thanks for any feedback. 

 

Component	Your Value		Standard Range
DEAMIDATED GLIADIN ANTIBODY		33 INDEX		INDEX
NEGATIVE: <20 WEAK POSITIVE: 20-30 MOD/STRONG POSITIVE: >30
TISSUE TRANSGLUTAMINASE,IGA			20 U/mL	U/mL
NEGATIVE: <20 WEAK POSITIVE: 20 TO 30 POSITIVE: >30
IMMUNOGLOBULIN A	256 mg/dL		70 - 400 mg/dL

[cyclinglady]

You are not IgA deficient (256), so that means the other celiac IgA tests will be valid.  You got a firm positive on the DGP (like me which was my ONLY positive in the celiac panel).  Ha!  My lab results said "mildly positive".  Your visual on the endoscopy was normal (like me), yet my biopsies revealed moderate to severe (Marsh Stage IIIB) patches of villi damage which can only be seen by a microscope.  So, you just need to wait for the lab report.  Hard to do, I know.

Welcome and keep us posted!   

[ironictruth]

5 hours ago, Lee Nass said:

Just got a series of blood work done and now waiting on results of endoscopy. Dr. said damage not visible during biopsy. What are the chances this is not celiac? My Immunoglobulin A was negative, but IGA is "weak positive," (what does that even mean) and DGA is positive. Is one test more reliable than the next? This seems like a mixed bag or results. I do feel better without gluten. It was hard to keep it up while going through testing. Thanks for any feedback. 

 

Component	Your Value		Standard Range
DEAMIDATED GLIADIN ANTIBODY		33 INDEX		INDEX
NEGATIVE: <20 WEAK POSITIVE: 20-30 MOD/STRONG POSITIVE: >30
TISSUE TRANSGLUTAMINASE,IGA			20 U/mL	U/mL
NEGATIVE: <20 WEAK POSITIVE: 20 TO 30 POSITIVE: >30
IMMUNOGLOBULIN A	256 mg/dL		70 - 400 mg/dL

So...looks like that the deamidated test is Inova's dgp screen. That specific test combines the dgp iga and igg antibodies. Inova also makes dgp tests that separate the antibodies  so that you would get one reading for the IGA and one reading for the IGG separately. 

I have tested positive 4 times to the test you test positive for roughly between 28 and 32 as values.  Once I was on a gluten-free diet and the other time I was on three months of eating gluten. The values hardly changed.  interestingly enough, twice during this time I also had the separated test drawn and they came back negative. 

 This discrepancy coupled with not feeling well for over a year drove me nuts.  I have researched the living hell out of this. the dgp Test is very helpful but it is not as accurate as the internet will lead you to believe.  I am currently trying to rule out or in thIs disease with a major Celiac research center and they also told me that they ended up doing endoscopies on a bunch of kids with positive Dgp's and there was absolutely no sign of celiac. Some Studies have even had people with positive DGP Not even have genetic the makeup for celiac. There was even a study that just came out last month on the dgp  not being as accurate out of a celiac research center in NYC.

 Inova had done a study when the test first came out and there were a few individuals who tested positive to the combined screen and negative on the separated Screen, as I did.  two or three were celiacs on a gluten-free diet and one was a first degree relative.  Since Initially I was on a gluten-free diet that is why I resumed eating gluten but the number did not change. I also happen to be a first degree relative Of someone with celiac.

 I did have a couple of extremely weak separated DGP IGA tests over a year ago and was told by another Celiac Disease Center in Chicago that those also were not particularly reliable.

 so, all I am saying is to take the results with a grain of salt. Especially if you do not feel well.  because you may find yourself hoping or wishing that your illness is due to something when really you have something else going on and you're not exploring that.  that being said, You're positive result certainly could point to celiac disease. you're going to want to stay on gluten, get an endoscopy/biopsy, and probably a gene test.  choose a doctor that has an understanding of celiac.  you want to do everything in your power to rule it in or out. 

 I seem to get some folks upset on the boards when I talk about DGP not being as accurate as we once thought it was. And I am by no means saying that you should ignore it. What I'm saying is is I've had this test on  numerous occasions and have tried the gluten-free diet,  even stuck to Whole Foods for a few months this summer, still felt unwell. Then came to the realization after doing the research that it probably is not gluten but something else. However, I am still going through the process of trying to rule it out.

 I hope you feel better!  I will certainly be interested in finding out whether or not  your biopsy shows any damage So keep me posted!

[cyclinglady]

@ironictruth -- in your research, have you ever come across studies about an elevated DGP but consistently negative TTGs?  I first thought it was a lab error when I was diagnosed, but even in follow-up testing, my TTG tests are always negative.  Only the DGP has been positive (measured twice after two different accidental/cross contamination glutenings).  My new GI does not have a clue.  

As a result, I have been encouraging members to ask for a full panel  (if my old GI had not ordered the entire panel my diagnosis would have been missed -- anemia was my only symptom).  But that still misses the 10% or so of celiac patients who have negative blood tests, positive biopsies,  and symptom resolution on a gluten free diet.  

Did you ever get a pill camera?  My niece was diagnosed with Crohn's with that device.  

[ironictruth]

1 hour ago, cyclinglady said:

@ironictruth -- in your research, have you ever come across studies about an elevated DGP but consistently negative TTGs?  I first thought it was a lab error when I was diagnosed, but even in follow-up testing, my TTG tests are always negative.  Only the DGP has been positive (measured twice after two different accidental/cross contamination glutenings).  My new GI does not have a clue.  

As a result, I have been encouraging members to ask for a full panel  (if my old GI had not ordered the entire panel my diagnosis would have been missed -- anemia was my only symptom).  But that still misses the 10% or so of celiac patients who have negative blood tests, positive biopsies,  and symptom resolution on a gluten free diet.  

Did you ever get a pill camera?  My niece was diagnosed with Crohn's with that device.  

 Good Lord I just had a really long response to you and my phone crashed.

 The study done last month out of Columbia was for TTG negative DGP positive.  What they found was DGP Is not as accurate as Thought and gives false positives.  interestingly, in this particular study the most accurate of the DGP tests happened to be the iNova combined screen, the one mentioned in this thread.  however a study done previously utilizing the DGP screen actually showed it to be lower  in accuracy then thIs study did. The Columbia study certainly caught a number of celiacs who were solely DGP positive As well! the authorS pointed out a couple of limitations, one being that they did not consider Marsh one or Marsh tWo as a positive biopsy.  the other limitation was that they did not do follow-up testing down the road on these folks who are negative on the biopsy.  but this is not the only stUdy I have a few other studies wHere DGP has been positive and people even lack the gene in addition to having a negative biopsy.  One study finds DGP IGA elevated in folks with liver disorders and some of them were Gene negative and biopsy negative as well.

 You know me by now Cycling lady, if it was a definite I would have clung to it! You could tell me I have Wallakazamitis  at this point and I would just be happy to know there was a cause for all this! I will hopefully hear next week whether or not I will be going back for another endoscopy.  I know you had mentioned the pill caMera before and one of the radiologists who did my barium X-ray also mentioned it as an option. But I figured I'd at least try to rule this out with the Celiac specialist first. It is Fasano, so I feel like  I will be confident in the answer.

 it is amazing to me really, even if I don't have Celiac I still have a sibling with it, and I have learned so much.  a local doctor lectured me over the summer When I was desperately trying to find answers by telling me there was no such thing as Seronegative celiac.  I had told him my brother it was found sEronegative.  i Ended up emailing him a study that had been published a month before out of Italy On seronegative celiac.  I'm pretty passionate about that because my brother was very sick and the doctor had refused to send him  to A GI because his blood work was negative. then he started dropping weight after months of weird symptoms.  so they finally sent him to the GI.  Biopsy was positive, gluten free diet was positive, and he gets all sorts of messed up now if he gets exposed to even the tiniest bit.

 I think people forget that seronegative simply means we haven't identified and created tests yet.  most docs probably do not know about tissue transglutamate 6,  including the doctor that lectured me over the summer.  and there are studies in infancy of tg6 being related to ALS type symptoms which really were mimicking symptoms and a diagnosis of celiac was eventually given. To credit this particular doctor over the summer, he had co-authored a study on a pseudo brain tumor In somebody with celiac disease.

 Oh, and of course the folks in Boston, who are research specialistS, told me it's about 10 to 15% of celiacs that are negative.  but that makes me wonder, I should ask them if they're including the DGP Test in their statistics because I don't think they rely on it very heavily there. 

 

[Lee Nass]

Thank you all for your guidance. I sincerely appreciate it, while I try to make sense of this new diagnosis. I'll keep you posted. 

[Lee Nass]

On 3/31/2017 at 7:47 PM, cyclinglady said:

You are not IgA deficient (256), so that means the other celiac IgA tests will be valid.  You got a firm positive on the DGP (like me which was my ONLY positive in the celiac panel).  Ha!  My lab results said "mildly positive".  Your visual on the endoscopy was normal (like me), yet my biopsies revealed moderate to severe (Marsh Stage IIIB) patches of villi damage which can only be seen by a microscope.  So, you just need to wait for the lab report.  Hard to do, I know.

Welcome and keep us posted!   

The results of my endoscopy have me so confused now: 

This letter is to inform you of the results of your EGD.

• Findings/Observations: Gastritis.
• Pathology: Gastritis (inflammation in the stomach) without H. Pylori found. Biopsies of your duodenum were entirely normal.
• Recommendations: There is no endoscopic evidence of celiac disease, which is good news. Given your serology findings I recommend that you start a gluten free diet an see how you feel. You may also be a candidate for genetic testing for celiac disease which can rule it out. Please follow up in the office regarding this testing.

[Jmg]

13 minutes ago, Lee Nass said:

Recommendations: There is no endoscopic evidence of celiac disease, which is good news. Given your serology findings I recommend that you start a gluten free diet an see how you feel. You may also be a candidate for genetic testing for celiac disease which can rule it out. Please follow up in the office regarding this testing.

Your doctor now has the positive serology results but no validation via endoscopy. So he can't definitively say you have celiac right now, but the combination of positive bloodwork and your reaction to the gluten free diet is strongly suggestive that you're either: celiac but the damage to the intestine was not caught by the endoscopy or maybe developing celiac, so that if you continued eating gluten the next test would be positive, or you're one of those people that don't have the intestinal damage but do react to gluten, non celiac gluten sensitive (although with your blood tests it may be that the former options are more likely. As you can tell this is not an easy condition to diagnose!

The key point is, for now the diagnostic part is done and your dr is recommending you trial the gluten free diet and see how you go. If that resolves symptoms, it could be they will diagnose you as celiac despite the endo results. But whether they do or don't won't make too much difference in my view.  The main thing is getting better and from what you've written you already know that gluten free is the best path for you.

I know this is not as clear cut an answer as you would like, as I got a similar result. My gastro advised me to give up gluten nonetheless and I'd already decided as much based on how bad the challenge was for me. The good news is that the diet did the trick. You may want to consider keeping a food journal as you go back on gluten free to track any changes so that if you meet with the dr later you can give him that data. Personally I wouldnt bother with the genetic test as I dont think it contributes much, but others may differ. 

Welcome to club possibly not celiac but gluten's not our friend either

 

[cyclinglady]

58 minutes ago, Jmg said:

Your doctor now has the positive serology results but no validation via endoscopy. So he can't definitively say you have celiac right now, but the combination of positive bloodwork and your reaction to the gluten free diet is strongly suggestive that you're either: celiac but the damage to the intestine was not caught by the endoscopy or maybe developing celiac, so that if you continued eating gluten the next test would be positive, or you're one of those people that don't have the intestinal damage but do react to gluten, non celiac gluten sensitive (although with your blood tests it may be that the former options are more likely. As you can tell this is not an easy condition to diagnose!

The key point is, for now the diagnostic part is done and your dr is recommending you trial the gluten free diet and see how you go. If that resolves symptoms, it could be they will diagnose you as celiac despite the endo results. But whether they do or don't won't make too much difference in my view.  The main thing is getting better and from what you've written you already know that gluten free is the best path for you.

I know this is not as clear cut an answer as you would like, as I got a similar result. My gastro advised me to give up gluten nonetheless and I'd already decided as much based on how bad the challenge was for me. The good news is that the diet did the trick. You may want to consider keeping a food journal as you go back on gluten free to track any changes so that if you meet with the dr later you can give him that data. Personally I wouldnt bother with the genetic test as I dont think it contributes much, but others may differ. 

Welcome to club possibly not celiac but gluten's not our friend either

 

I could not have said it better!  

[RMJ]

If your antibodies go down on a gluten free diet that would be evidence that gluten is an issue for you.

[Gemini]

42 minutes ago, RMJ said:

If your antibodies go down on a gluten free diet that would be evidence that gluten is an issue for you.

Exactly!  I think the whole problem here is that the medical profession refuses to diagnose people unless they have Marsh III damage.  We all know that, unless you have severe patchy damage, it is very easy to miss. So, many have the beginnings of Celiac but have to wait, like I did, until they have maximum damage, even though they are popping the antibody testing. 

I am not partial to the DGP and have not read enough about the findings on why it seems to be somewhat unreliable.  But when someone pops with more than one positive, especially the tTg, it would seem unlikely that the DGP would be a false positive.  I think in this case it is likely Lee has Celiac but in the very early stages so finding it to the acceptable levels of the AMA is not happening right now.  The gluten-free diet should provide some answers and re-testing the antibodies down the road.

 

[Jmg]

7 hours ago, Gemini said:

I think in this case it is likely Lee has Celiac but in the very early stages so finding it to the acceptable levels of the AMA is not happening right now.  

I think Lee's doctor has the right approach. He can't diagnose celiac, but he's aware that he's not excluded it either and he already has his patient's testimony that the gluten free diet helped him. I know the diet can be restrictive but given the flaws in each of the sero tests and the chances the endo misses something I think far more doctors should be advising a thorough trial of the gluten free diet after testing is complete. 

I had way more than enough evidence after my challenge to make that decision for myself. But if I'd gone in for testing as a younger man, faced with the enormity of giving up so much of the things I enjoyed and without a definitive answer I may not have given gluten free another thought, happy to stick with the 'exclusion' from a negative scope. It worries me there will be many out there like that, condemned to a lifetime of unexplained ailments due to the reluctance of doctors to consider that current testing procedures aren't fully reliable. 

 

[ironictruth]

11 hours ago, Lee Nass said:

The results of my endoscopy have me so confused now: 

This letter is to inform you of the results of your EGD.

• Findings/Observations: Gastritis.
• Pathology: Gastritis (inflammation in the stomach) without H. Pylori found. Biopsies of your duodenum were entirely normal.
• Recommendations: There is no endoscopic evidence of celiac disease, which is good news. Given your serology findings I recommend that you start a gluten free diet an see how you feel. You may also be a candidate for genetic testing for celiac disease which can rule it out. Please follow up in the office regarding this testing.

Yeah, this is pretty much what happened to me. My first scope on gluten for 6 weeks was totally fine. My 2nd scope off of gluten several months later showed duodenitis ( no villi blunting) and the same test you test positive for which above, I explained the current research on.  Again, except for two very weak positives on the separated DGP IGA tests, I tested negative to the separated tests within days of testing positive to what you tested positive for, the DGP screen.

I continued to feel poorly on a gluten free diet but admit I was still eating out and was not careful until 5 months on the diet, right after the duodenitis was found. Now I am back on gluten because I want it ruled out/in by a celiac specialist. I had 2 docs say probable celiac and  a few said no. It is confusing!

It might be worth getting the gene test, asking for the separated DGP assays (perhaps a different lab in town) and see how they test. 

Do you know how many biopsies were taken? Any from the duodenal bulb? See if you can get a copy of the pathology report. Do you have celiac in the family? Would you be willing to eat it for awhile longer and see a celiac specialist to rule it out? Have you had gastritis before? 

A gluten free diet might be worth a shot. And people on the boards here will remind you that it takes time on the diet to feel better. BUT, there is a difference between time for healing a destroyed gut and time passing not feeling well with the wrong diagnosis.

We should keep in touch as our stories/results are very similar and I am working with a clinic in Boston. I am still waiting to hear if I will be going for another endoscopy based on the latest DGP screen.