Positive gliadin is now normal

[Runningmomma]

Hello! This is my first post.

My big question is about Gliadin IgG. I was tested in 2004 and had a high positive at 64 (24 being positive). My Dr at the time told me I should cut back on gluten and diagnosed me with Sjogrens Syndrome (even though I was B12 deficient, anemic, and having such bad acid reflux that I would get sores all over the back of my throat).

Recently I was diagnosed with Lupus (SLE) and asked to be tested for Celiacs. My Gliadin tests came back negative, but TtG IgG was 6 (6-9 weak positive). TtG IgA was 1.4. Tomorrow I get the endoscopy and biopsy.

I'm so confused as to why I tested so high for Gliadin IgG and now it is negative. I am not gluten free. The Dr said she has no idea and they are just trying to figure it out. Ive read Celiacs does not go into remission unless you are gluten free. 

Does anyone know how I could have been positive 12 yrs ago and now be negative?

[Runningmomma]

Also, I only mentioned Sjogrens and Lupus to point out that I have two autoimmunes now, and Was told you could test weak positive for other a.i.s when you have Lupus.

[ironictruth]

Had you cut back or cut out gluten prior to the test? 

Any test can produce a false positive on that test, but if you cut back on gluten then you are not making those antibodies to it either which could result in a false negative.

[cyclinglady]

I think your doctor was wise to order an endoscopy.  My antibody result (only the DGP) was elevated at the time of my diagnosis with a Marsh Stage IIIB (biopsy moderate to severe).  I have had two good glutenings (unknown source) since then and my antibodies have gone off the chart.  So, I am assuming antibodies, like my symptoms,  can vary).  This is a perplexing disease!  

Please let us know how you are doing.  

[Runningmomma]

17 hours ago, ironictruth said:

Had you cut back or cut out gluten prior to the test? 

Any test can produce a false positive on that test, but if you cut back on gluten then you are not making those antibodies to it either which could result in a false negative.

I've definitely cut back but I probably have something with gluten in it just about everyday. 

[plumbago]

You are correct in that celiac does not go into remission unless you are gluten-free. The only thing I could think of to explain the negative IgG gliadin now (and I may well be wrong) is if you are taking anything for the lupus (ie steroids)? In other words, could your immune suppressing medication, if you are taking any, be affecting your blood test results?

Plumbago

[RMJ]

Were they exactly the same tests? Could the older one be gliadin and the newer one deamidated gliadin peptides?

[ironictruth]

2 hours ago, RMJ said:

Were they exactly the same tests? Could the older one be gliadin and the newer one deamidated gliadin peptides?

I think you hit the jackpot. In 2004 DGP was hardly used in  non research settings. Now you would be hard-pressed to find a non research lab that would run the old Gliadin tests.  I was actually told this by a researcher. 

The old gliadin tests  can be positive in A number of autoimmune conditions, and healthy controls as well. It also shows up positive in about 50% of folks with non-celiac gluten sensitivity.

 

[Runningmomma]

15 hours ago, RMJ said:

Were they exactly the same tests? Could the older one be gliadin and the newer one deamidated gliadin peptides?

I was wondering about that. The new test didn't specify deamidated Gliadin peptides but I'm assuming it is.  How do I know? Also, I'm assuming the 2004 test was just the Gliadin test. I'm waiting on biopsy results now. My TtG IgG was weak positive which was my only positive this go around. Feeling kind of down because they found stomach ulcers and biopsied for h. pylori as well.  I'm still nursing my baby and concerned about breastfeeding through treatment, but I'll have to wait and see if that's even the cause. I was looking for info on stomach ulcers and celiac or gluten sensitivity. Now I'm wondering after all these years if I don't have celiacs or gluten sensitivity and maybe it's just the  autoimmune diseases and that's what the original Gliadin test picked up on. 

[ironictruth]

DGP  was not really used in traditional labs in 2004. On the flip side, gliadin is no longer really used in traditional Labs now.  I would be shocked if you went to a lab that was still using it. If you get your test results from the lab, like an actual print out that maybe they send to the doctor, he could scan a copy to you, it may say the test was run using Inova Gliadin Lite II. That "II"  Is the indication they are using the DGP test. You could also always just call the lab and ask them But you may want to speak with a supervisor.

 You certainly have a tough case. Because that Weak positive TTG could also point to Celiac and/or other autoimmune as well.

 Have you had the genetic test yet? With a positive on the older gliadin tests and a positive on TTG it may be worth having the gene test done.  You also may want to give the gluten-free diet a really good shot regardless of what the results of the endoscopy are.

 Keep us posted!

[Runningmomma]

On 7/1/2017 at 2:23 AM, plumbago said:

You are correct in that celiac does not go into remission unless you are gluten-free. The only thing I could think of to explain the negative IgG gliadin now (and I may well be wrong) is if you are taking anything for the lupus (ie steroids)? In other words, could your immune suppressing medication, if you are taking any, be affecting your blood test results?

Plumbago

I have mild Lupus and am trying to stay off meds as long as possible. The only thing I take now is a multi vitamin and a fish pill.  

[Runningmomma]

13 hours ago, ironictruth said:

DGP  was not really used in traditional labs in 2004. On the flip side, gliadin is no longer really used in traditional Labs now.  I would be shocked if you went to a lab that was still using it. If you get your test results from the lab, like an actual print out that maybe they send to the doctor, he could scan a copy to you, it may say the test was run using Inova Gliadin Lite II. That "II"  Is the indication they are using the DGP test. You could also always just call the lab and ask them But you may want to speak with a supervisor.

 You certainly have a tough case. Because that Weak positive TTG could also point to Celiac and/or other autoimmune as well.

 Have you had the genetic test yet? With a positive on the older gliadin tests and a positive on TTG it may be worth having the gene test done.  You also may want to give the gluten-free diet a really good shot regardless of what the results of the endoscopy are.

 Keep us posted!

I have not had the genetic test done. I don't know if they would run that on me because I have insurance through the state. I was shocked they rushed me in for having an endoscopy and colonoscopy. 

[Runningmomma]

Has anyone else had nausea and stomach pain after biopsy?

[ironictruth]

45 minutes ago, Runningmomma said:

Has anyone else had nausea and stomach pain after biopsy?

Yes! I will spare you the long boring backround details but it turns out those drugs they use to knock you out can wreak havoc on your gut. A nurse helped me put 2 and 2 together after a procedure. I had a few over several months and kept getting worse. It became frustrating because it became a "symptom" that we could not figure out so it was steering us in the wrong direction. Last scope they did, we changed the meds, no issues. 

1) make sure your doc knows so s/he can monitor

2) skip coffee, hot and acidic stuff, high fat foods, alcohol, uncooked veggies, sugar for a couple of weeks

3) dgl licorice. 

4) geez, I thought i edited this, apologize if it went elsewhere on the boards. Running can cause intestinal bleeds too. And advil or aspirin can increase this. Go figure. So take it easy on yourself the next few weeks. 

5) i have good health insurance and still had to pay bucks for the gene test but my sibling paid nothing. Worth a phone call.

[plumbago]

43 minutes ago, Runningmomma said:

I have mild Lupus and am trying to stay off meds as long as possible. The only thing I take now is a multi vitamin and a fish pill.  

Ah ok, then. It may be because you took two different gliadin tests, as others have said. You asked how you could know upthread. Take a look at the printout of your lab results, and it should say. You can ask for them if you don't already have them.

[Gemini]

On 7/1/2017 at 10:10 AM, ironictruth said:

I think you hit the jackpot. In 2004 DGP was hardly used in  non research settings. Now you would be hard-pressed to find a non research lab that would run the old Gliadin tests.  I was actually told this by a researcher. 

The old gliadin tests  can be positive in A number of autoimmune conditions, and healthy controls as well. It also shows up positive in about 50% of folks with non-celiac gluten sensitivity.

 

If you are referring to the AGA/IgA and IgG testing, those tests are still used in repeat antibody testing for dietary compliance, along with the newer DGP. The lab I use always runs both. Neither test will show positive unless you are reacting to the gluten in your diet that you are consuming.  Other AI issues will not show up on Gliadin testing but will sometimes elevate tTg slightly. Celiac Disease will elevate tTg by large numbers, though........much higher than other AI issues.

 

 

[ironictruth]

14 hours ago, Gemini said:

If you are referring to the AGA/IgA and IgG testing, those tests are still used in repeat antibody testing for dietary compliance, along with the newer DGP. The lab I use always runs both. Neither test will show positive unless you are reacting to the gluten in your diet that you are consuming.  Other AI issues will not show up on Gliadin testing but will sometimes elevate tTg slightly. Celiac Disease will elevate tTg by large numbers, though........much higher than other AI issues.

 

 

That amazes me that they are still in use at your lab. Is your lab associated with a research hospital? We could not find a lab anywhere within 2 hours of me that ran the AGA tests UNLESS they were part of a reflex cascade. If TTG and DGP were negative, it would automatically test for AGA, but ONLY if the prior were negative and they absolutely would NOT solely run the AGA as they would have to                           "re-caliber" (probably not the correct word) the machines to do it. I even got the same info from a celiac researcher in Italy, that it is very difficult there to find any place that is not a research lab which runs the AGA tests anymore.

 

With regard to AGA, even healthy controls can have positive AGA but curiously it does pop up in other autoimmune conditions and diseases as well.  A few examples:

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[Gemini]

The lab I used was Genova Labs and they are a pretty progressive lab, with regards to testing. They bill using a Pay Assure system, where you pay up front a certain amount set by the Lab and then they bill your insurance company. If the insurance company pays out, then you get a refund. If they refuse payment, then the amount you paid is what they accept for the testing.  They do a comprehensive full panel for diagnosis and use the DGP and AGA on repeat testing for dietary compliance, along with tTg.  

All the time on this forum, people complain about the lack of complete testing in their panels for diagnosis but that is the way things are going........it's the Walmart school of medicine. Do minimum and see what comes up. By going through Genova, you may pay some out of pocket but it is reasonable and my insurance picks up most of it.  They have been covering my repeat testing but I have no idea if other insurance plans cover everything. I feel these 2 tests provide valuable information because I was diagnosed using only the AGA as I was diagnosed 12 years ago. It is true that the DGP is more sensitive as on last testing, the AGA came in at a 1 but the DGP was a 4.  I thought the difference interesting. This lab does other mainstream testing and it is always more comprehensive than what you get at most doctor's offices. On the cardiac panel, they don't just do basic cholesterol but include homocysteine and other inflammatory markers for cardiac disease, which I really like. It's annoying that other labs don't do the same but it's all about money now. Research hospitals tend to be very mainstream and may only use certain tests and discard older ones they feel are outdated. I don't always agree with that.  I failed all tests on the diagnosis panel by large numbers so like to see all of these on retest, except for the EMA as that is really a diagnostic test and doesn't have to be repeated yearly.......it's too expensive anyway.

As far as the AGA being positive in people with other AI disease, I'm not sure I buy that.  It's a test to check for reaction to gluten in the diet and if it is positive, then you probably have Celiac Disease.  As most of the diseases mentioned also occur with Celiac Disease, I wonder if they missed the diagnosis in many? They also mentioned people who worked with large amounts of wheat as showing positive but if you don't have Celiac, why would you show positive? You wouldn't be producing antibodies. tTg I could see as that does elevate with other AI diseases but far less than full blown Celiac. Very weird!

[ironictruth]

On 7/3/2017 at 11:12 PM, Gemini said:

The lab I used was Genova Labs and they are a pretty progressive lab, with regards to testing. They bill using a Pay Assure system, where you pay up front a certain amount set by the Lab and then they bill your insurance company. If the insurance company pays out, then you get a refund. If they refuse payment, then the amount you paid is what they accept for the testing.  They do a comprehensive full panel for diagnosis and use the DGP and AGA on repeat testing for dietary compliance, along with tTg.  

All the time on this forum, people complain about the lack of complete testing in their panels for diagnosis but that is the way things are going........it's the Walmart school of medicine. Do minimum and see what comes up. By going through Genova, you may pay some out of pocket but it is reasonable and my insurance picks up most of it.  They have been covering my repeat testing but I have no idea if other insurance plans cover everything. I feel these 2 tests provide valuable information because I was diagnosed using only the AGA as I was diagnosed 12 years ago. It is true that the DGP is more sensitive as on last testing, the AGA came in at a 1 but the DGP was a 4.  I thought the difference interesting. This lab does other mainstream testing and it is always more comprehensive than what you get at most doctor's offices. On the cardiac panel, they don't just do basic cholesterol but include homocysteine and other inflammatory markers for cardiac disease, which I really like. It's annoying that other labs don't do the same but it's all about money now. Research hospitals tend to be very mainstream and may only use certain tests and discard older ones they feel are outdated. I don't always agree with that.  I failed all tests on the diagnosis panel by large numbers so like to see all of these on retest, except for the EMA as that is really a diagnostic test and doesn't have to be repeated yearly.......it's too expensive anyway.

As far as the AGA being positive in people with other AI disease, I'm not sure I buy that.  It's a test to check for reaction to gluten in the diet and if it is positive, then you probably have Celiac Disease.  As most of the diseases mentioned also occur with Celiac Disease, I wonder if they missed the diagnosis in many? They also mentioned people who worked with large amounts of wheat as showing positive but if you don't have Celiac, why would you show positive? You wouldn't be producing antibodies. tTg I could see as that does elevate with other AI diseases but far less than full blown Celiac. Very weird!

That is awesome that you have access to the lab. AGA testing comes back positive in about half of folks with ncgs too so I think it is beneficial to have labs continue to offer it. 

Testing is crazy. I am positive on one type of DGP test (combined assay) but negative on the separated assay (1 point weak positive on the IGA twice). This can happen to celiacs on a gluten free diet or first degree relatives (which i am). When my biopsy showed a          Marsh 1 I searched for a lab that offered the AGA to no avail. Did you have a doc's script? My state will not allow the type of lab where you go to without a doc's order.

As per the AI/other disease connections I agree with you that they often accompany celiac.

[Gemini]

5 hours ago, ironictruth said:

That is awesome that you have access to the lab. AGA testing comes back positive in about half of folks with ncgs too so I think it is beneficial to have labs continue to offer it. 

Testing is crazy. I am positive on one type of DGP test (combined assay) but negative on the separated assay (1 point weak positive on the IGA twice). This can happen to celiacs on a gluten free diet or first degree relatives (which i am). When my biopsy showed a          Marsh 1 I searched for a lab that offered the AGA to no avail. Did you have a doc's script? My state will not allow the type of lab where you go to without a doc's order.

As per the AI/other disease connections I agree with you that they often accompany celiac.

Just to clarify what you are saying  to make sure I have it right.......do you mean that someone with Celiac following a gluten free diet can test for a weak positive on the DGP or, on re-test, it is not zero but registers low normal?  If someone has a weak positive on re-test, then they are ingesting small enough amounts that it is pushing their blood work up over the normal range. If you are a first degree relative with symptoms and a weak positive on the DGP, then you really might have Celiac also.  Were you diagnosed based on Marsh 1 damage because I know how difficult some docs can be on that one. Damage is damage and you were lucky that it was caught early, is my response!

If you go on Genova's website, I am pretty sure they have a listing for doctor's who do the Genova kits.  You do need a doctor's order for their testing because most of their testing, if not all, are comprehensive medical tests and not the "out in left field" kind of testing.  I just find they are more comprehensive and include more tests in each panel to give a better picture of what's going on.  I can ask my doc at the end of the month at my appointment if they still do the AGA in their panels as it's been 2 years since I had my antibodies done. That's an eternity in medical time.    But check the site out.....you may be able to find someone in your area that can help.

It really shouldn't be this hard to get a simple blood test done........

[Runningmomma]

This is all really interesting. Thank you everyone for your input and responses! I found a relative study to Lupus and Sjogrens and weak positive IgG! 

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How did you guys receive your biopsy results? The surgery center I went to said they mail them snail mail in 7-14 days. This sounds crazy! Shouldn't a dr go over the results with me? And it seems like they would also add the results to my online patient portal. This has been a strange experience! The office also changed my apt. time and didn't inform me until the day before the procedure when I was doing prep! They told me they sent me a letter in the mail to tell the apt. time was changed. I'm still waiting on that letter via snail mail...it's Wednesday and my procedure was last Friday!

[plumbago]

Doctors can take a while to get the correspondence out - sometimes I have to ask three times (tel/portal/fax - or some combination thereof) for results or a report, but it eventually gets sent. It's possible that the lab that received your sample is still processing it.

Also, what may happen is the GI doc (specialist) may send the report to your general practitioner who, ideally, will call you to go over the results. And / or the GI doc him or herself will go over the results with you. In my own case, the GI who did my scope strongly suspected celiac and told me so once I came to after the procedure, but said he would know once biopsy results came back, for sure. My regular doctor called me right away once he got the endoscope results and biopsy report.

Plumbago

[ironictruth]

17 hours ago, Gemini said:

Just to clarify what you are saying  to make sure I have it right.......do you mean that someone with Celiac following a gluten free diet can test for a weak positive on the DGP or, on re-test, it is not zero but registers low normal?  If someone has a weak positive on re-test, then they are ingesting small enough amounts that it is pushing their blood work up over the normal range. If you are a first degree relative with symptoms and a weak positive on the DGP, then you really might have Celiac also.  Were you diagnosed based on Marsh 1 damage because I know how difficult some docs can be on that one. Damage is damage and you were lucky that it was caught early, is my response!

If you go on Genova's website, I am pretty sure they have a listing for doctor's who do the Genova kits.  You do need a doctor's order for their testing because most of their testing, if not all, are comprehensive medical tests and not the "out in left field" kind of testing.  I just find they are more comprehensive and include more tests in each panel to give a better picture of what's going on.  I can ask my doc at the end of the month at my appointment if they still do the AGA in their panels as it's been 2 years since I had my antibodies done. That's an eternity in medical time.    But check the site out.....you may be able to find someone in your area that can help.

It really shouldn't be this hard to get a simple blood test done........

I know, confusing. INOVA has a few different types of assays which include DGP. One is your typical DGP IGA and IGG test and another is a combined assay which is the DGP screen (combines IGA and IGG in one test). On three occasions I  tested positive to the combined assay but negative on the separated IGA and IGG assays.  someone on the boards here pointed me to where you could access the FDA decision summaries on these types of tests. So I looked it up  and out of the several hundred people they studied only a few tested positive for the combined screen but negative on the separated screens.  they were celiacs on a gluten-free diet and one was a first-degree relative.  I was both on a gluten-free diet at the time and also Am A first Degree relative. So at this point I went and saw a Celiac specialist, resumed eating gluten, and re-did the testing at about 12 or 13 weeks and got the exact same result.  actually the result also came back in the same range too low thirties. The cutoff is 20.  waited another Two months  at my primary care ran the testing with a separated essays, and they came back negative. We Did the biopsy at 4 months and there was just an increase in IEL  which according to my specialist, they sometimes see in NCGS.

 So honestly, I have no freaking clue.

 At cycling lady's suggestion I asked my local GI, who is not my specialist, if we can do a pillcam. He's willing to see if the insurance will approve it.  I was told to go gluten-free by my specialist though.

[Gemini]

You know, they really ought to standardize testing protocol a bit better for some diseases like Celiac so we have some consistency here!  I have never seen the combined assay before and I am not really sure why they would combine antibody testing like that but hey, I am not wearing the white coat!

Increased IEL's also happen in the early stages of Celiac and we all know it can take YEARS for it to get bad enough for the blood screen to scream positive or show up as Marsh damage on biopsy. As a first degree relative, you know you probably have the ability to pop for it. Have you had the gene testing done? I think the pill cam is a good idea and it will be interesting to see what it shows when you have it done.....hopefully!  Are you gluten free now before any more testing?

[RMJ]

6 hours ago, Gemini said:

You know, they really ought to standardize testing protocol a bit better for some diseases like Celiac so we have some consistency here!  I have never seen the combined assay before and I am not really sure why they would combine antibody testing like that but hey, I am not wearing the white coat.    

I used to work in the diagnostics industry.  It is highly likely that it is the marketing department, not the white coat wearers, who like the combined testing, allowing their product to be different from the competition.