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I Don't Understand My Test Results... Help!
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Hello,

I have been reading some of the posts here and think that I am one of those who is totally confused about what my celiac screening panel results actually mean. To start - I have a family history of celiac as my father was dx late in life but likely had symptoms for at least 20 years before. When my father was dx, I had the standard blood tests to check and all I can remember from that time (8 years ago) is that one, or possibly more, of the tests was positive enough for the doc to recommend that I see a specialist. The specialist said I didn't have the "classic" symptoms therefore a biopsy was not needed. At the time, I was young and thought "ok that's fine with me, I will keep eating gluten, yay".

 

Now, however, it's a different story. After spending most of my 20s with various GI issues and the IBS diagnosis, I decided to try gluten free and did start to feel better generally. I did that for about 2 years and then thought that I should probably get a real diagnosis. I started eating gluten again off and on for a year and then did the gluten challenge for 6 weeks and had a screen of tests done last month.

 

So...my results are that the DGP IgA was positive, but a weak positive, and the other tests were not above the normal range.  My current doc (not the one who did the tests 8 years ago) thinks that I should keep eating gluten and we will re-screen in 4-6 months. I am ok with that because I want to know for sure if I have it. But my question is does this DGP IgA test indicate that I am re-damaging my gut by eating gluten? I don't understand what it means, especially because the other tests were not really high. What do we know about the DGP IgA tests?

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I would, at this point, suggest doing the biopsy.

 

The thing about those blood tests is that one out of the panel can come back positive, and you can still have celiac. I'm suggesting the biopsy because of your family history plus the positive blood test.

 

I'm not very knowledgeable with the DGP IGA, but i do know that it is quite sensitive for celiac.

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You've tested positive now, and positive years ago, and you have it in the family... that is really pointing towards celiac disease. The DGP IgA is 93-96% specific to celiac disease according to the World Gastroenterology Organisation Global Guidelines. That is pretty specific, especially if you had another different type of positive test in the past.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

It is not uncommon to be positive in one test and not the other.  I think that's why they run so many different types of tests - so they catch most people. If you are still in doubt, get the endoscopic biopsy like Shadowicewolf suggested. Just remember that the damaged pateches can be missed and you can get a false negative... A false positive test is much much more rare than a false negative test when it comes to celiac testing.

 

Ideally, try not to wait half a year before going gluten-free. As a celiac, you could be doing continuing damage to your health if you continue to eat gluten.

 

Best wishes in whatever you decide.

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I'm a newbie here, but here's my two cents.  Perhaps, it will help you!  

 

I have had Hashimoto's thyroiditis and mild anemia on and off for years.  During a routine colonoscopy, my gastro wanted to test me for Celiac Disease.  My blood test showed "mildly abnormal celiac result".  My husband has been gluten-free for 12 years, so I baked cookies for myself, but always served a gluten free dinner, etc.  Prior to my endoscopy I went crazy eating wheat (a loaf of good bread a day, I kid you not!) By the time of the procedure, I developed abdominal problems (lead feeling in tummy, indigestion, etc.)  My biopsy showed moderate to severe damage to my villi! 

 

I'm feeling better finally after six weeks of a gluten-free diet, but I'm hoping I didn't do permanent damage.  I only did the endoscopy because 1) I have a daughter who has  two parents who can't eat gluten) and 2) I needed support and wanted to help extended family. 

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I'm a newbie here, but here's my two cents.  Perhaps, it will help you!  

 

I have had Hashimoto's thyroiditis and mild anemia on and off for years.  During a routine colonoscopy, my gastro wanted to test me for Celiac Disease.  My blood test showed "mildly abnormal celiac result".  My husband has been gluten-free for 12 years, so I baked cookies for myself, but always served a gluten free dinner, etc.  Prior to my endoscopy I went crazy eating wheat (a loaf of good bread a day, I kid you not!) By the time of the procedure, I developed abdominal problems (lead feeling in tummy, indigestion, etc.)  My biopsy showed moderate to severe damage to my villi! 

 

I'm feeling better finally after six weeks of a gluten-free diet, but I'm hoping I didn't do permanent damage.  I only did the endoscopy because 1) I have a daughter who has  two parents who can't eat gluten) and 2) I needed support and wanted to help extended family. 

 

You've tested positive now, and positive years ago, and you have it in the family... that is really pointing towards celiac disease. The DGP IgA is 93-96% specific to celiac disease according to the World Gastroenterology Organisation Global Guidelines. That is pretty specific, especially if you had another different type of positive test in the past.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

It is not uncommon to be positive in one test and not the other.  I think that's why they run so many different types of tests - so they catch most people. If you are still in doubt, get the endoscopic biopsy like Shadowicewolf suggested. Just remember that the damaged pateches can be missed and you can get a false negative... A false positive test is much much more rare than a false negative test when it comes to celiac testing.

 

Ideally, try not to wait half a year before going gluten-free. As a celiac, you could be doing continuing damage to your health if you continue to eat gluten.

 

Best wishes in whatever you decide.

Thank you so much for your replies! The thing is that I don't know which test I was positive for in the past or that it was even positive (but I think it was), because it was so long ago and I don't have the results, it's just that I remember being referred to a specialist who didn't think a biopsy was needed then.

 

And this most recent time, I am "just" over the normal range - I was a 10.8 when 9.9 is the max upper limit for normal.  As much as I would like to go back to gluten free and never look back, I'm not sure that result is enough to eliminate the little bit of doubt in my mind and it's not enough for my family doc to strongly recommend a biopsy (according to the doc). I have been having abdominal symptoms on and off this past year, but that started before I was eating gluten regularly, when I was having it once or twice a month. it's hard to connect the two, as much as I would like to, because I do believe that there is something going on with my diet, but the medical system requires more "proof". Because I already tried gluten free for a few years, but didn't have a diagnosis, I feel like I need to get some more confirmation before doing it again.  

 

The family history is also a big red flag, I agree. I don't want to end up like my dad who didn't "feel right" for DECADES but the doctors could never identify what was going on!!I am thinking of eating gluten for another 6 weeks, which would put me at just over 3 months of eating it and then get another batch of tests done. Waiting until I have been eating it for 6 months seems like wayyy too long but I have read that some recommendations for the "gluten challenge" are up to 3 months, and I definitely didn't wait that long before being tested recently.

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I understand wanting to be really sure - I was the same way.  :) Three months of gluten (1-4 slices of bread or equivalant per day) is very reasonable amount of time to get your antibodies back up. I hope you don't feel poorly over the next few weeks.  Good luck.

 

BTW, eating gluten every couple of weeks is enough to keep many celiacs feeling pretty ill. When a celiac consumes gluten, it causes autoantibodies to act up for a while - not just at that meal but for days or even weeks... and then it takes time for the intestinal wounds to heal. If you do end up gluten-free, try to get it as close to 100% gluten-free as possible or you may not actually reap any of the health benefits.  Best wishes.  :)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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