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Help with test results, negative and weak positives

Sanders

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Sanders Rookie
Sanders
Posted

I just got my blood test results back and my doctor said that it's indicative of Celiac, wants me to try gluten-free for 2 months, if my symptoms disappear, the diagnosis is basically confirmed. I did Whole30 diet a few months back and my symptoms disappeared (abdominal pain, bloat, hives, rash on back, foggy brain, etc), so I'm assuming they will after 2 months of no gluten. Here are my questions:

I have an "above high normal" Endomysial IgA, Gliadin AB Deamind. IgG and IgA (these both say "weak positive"), but negative TTG IgG and IgA. I know that I've read the TTG is not necessarily as strong of a test, so it might have missed it. Is it safe to say I have Celiac, even with the negative TTG and the "weak positive"?  Here are my results.

ENDOMYSIAL IgA RESULT: 1:40 REFERENCE: <1:10 Titer
Above high normal

GLIADIN AB, DEAMID. IgG  RESULT: 25.6    REFERENCE:                                                                                                                                                                     NEGATIVE U/ML <20
WEAK POSITIVE U/ML 20-30
POSITIVE U/ML >30

GLIADIN AB, DEAMID. IgA RESULT: 24.9 REFERENCE:                                                                                                                                                                     NEGATIVE U/ML <20
WEAK POSITIVE U/ML 20-30
POSITIVE U/ML >30

TTG IgG  RESULT: 2.8 REFERENCE:                                                                                                                                                                                                    NEGATIVE U/ML <6
WEAK POSITIVE U/ML 6-9
POSITIVE U/ML >9

TTG IgA RESULT: 2.5 REFERENCE:                                                                                                                                                                                                    NEGATIVE U/ML <4
WEAK POSITIVE U/ML 4-10
POSITIVE U/ML >10

 

Thanks for the help, I feel pretty lost reading any lab results. 

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CherylS Apprentice
CherylS
Posted

Hi,

I'm no expert, but I would say that a weak positive is still a positive.  How long have you had gluten back in your diet? How much gluten did you eat in the weeks leading up to your blood test?  I hope someone with more knowledge comes along soon.

nvsmom Community Regular
nvsmom
Posted

Yes.  :(  That's celiac. You have three positive tests. Many people only have one positive test, or just a positive endoscopy.  Even though they are not sky high results, they are still positive.

I like to compare a positive celiac test to a positive pregnancy test.  A positive is a positive even if it is a bit weak.

The EMA IgA is about 98% specific to celiac disease, so you have a 2% chance of that test being a fasle positive It generally indicates pretty advanced disease too.  The DG IgA is about the same; again highly specific to celiac disease.  The DGP IgA is a slightly weaker tests with about a 5% chance of getting a false positive.  BUT when you look at them all together, I would say your chances are slim to none of the three positive tests being wrong.  :(

I don't like how your doctor said to try the diet for only 2 months though.  Some people go through a withdrawal when the go gluten-free so they feels worse at first.  Plus, some symptoms can take a good 6 months before they even START to improve (usually ataxia, neuropathies, arthritis, osteoporosis and nutritional deficiencies).  Give the diet a good 6 months before judging it's effectiveness. 

And to be honest, even if you do not notice a great improvement, with three positive tests you should probably stay gluten-free for life.

So... settle in to the gluten-free diet, give yourself time to adjust, and welcome to the boards.  :)

Sanders Rookie
Sanders
Posted
  • Author

Hi,

I'm no expert, but I would say that a weak positive is still a positive.  How long have you had gluten back in your diet? How much gluten did you eat in the weeks leading up to your blood test?  I hope someone with more knowledge comes along soon.

Thanks, CherylS. I finished the elimination diet at the end of July and then kind of gradually started eating it again. The past month or so it's kind of been a free for all. 

cyclinglady Grand Master
cyclinglady
Posted

Is there a reason why your doctor did not order an endoscopy to obtain biopsies?  It usually is the final step.  Some people skip this step because of cost (lack of insurance) or long wait times in some countries.  

Sanders Rookie
Sanders
Posted
  • Author

Yes.  :(  That's celiac. You have three positive tests. Many people only have one positive test, or just a positive endoscopy.  Even though they are not sky high results, they are still positive.

I like to compare a positive celiac test to a positive pregnancy test.  A positive is a positive even if it is a bit weak.

The EMA IgA is about 98% specific to celiac disease, so you have a 2% chance of that test being a fasle positive It generally indicates pretty advanced disease too.  The DG IgA is about the same; again highly specific to celiac disease.  The DGP IgA is a slightly weaker tests with about a 5% chance of getting a false positive.  BUT when you look at them all together, I would say your chances are slim to none of the three positive tests being wrong.  :(

I don't like how your doctor said to try the diet for only 2 months though.  Some people go through a withdrawal when the go gluten-free so they feels worse at first.  Plus, some symptoms can take a good 6 months before they even START to improve (usually ataxia, neuropathies, arthritis, osteoporosis and nutritional deficiencies).  Give the diet a good 6 months before judging it's effectiveness. 

And to be honest, even if you do not notice a great improvement, with three positive tests you should probably stay gluten-free for life.

So... settle in to the gluten-free diet, give yourself time to adjust, and welcome to the boards.  :)

Thanks for the response, nvsmom. I was thinking 2 months didn't sound like a long enough time either. When i did the month long elimination, some of my symptoms disappeared (my rash, etc) but I felt like I still should have kept at it. I'm actually looking forward to having a solid diagnosis and knowing that there's a fix!

With the EMA IgA, what do you mean "It generally indicates a pretty advanced disease"? Would it not show up normally at an early stage? I'm kind of trying to pinpoint when my symptoms would have started, i had my 2nd child 18 months ago and I feel like things have been downhill since then for sure, but I can definitely think of other symptoms I have had before that as well. Thanks for your help, I really appreciate it. 

Sanders Rookie
Sanders
Posted
  • Author

Is there a reason why your doctor did not order an endoscopy to obtain biopsies?  It usually is the final step.  Some people skip this step because of cost (lack of insurance) or long wait times in some countries.  

Not a reason that I know of. I was kind of expecting that to be the next step, but he said that since I've had luck eliminating gluten from my diet before, and with the positive blood tests that it didn't seem necessary. So, I'm confused about if it is or isn't necessary. 

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nvsmom Community Regular
nvsmom
Posted

Thanks for the response, nvsmom. I was thinking 2 months didn't sound like a long enough time either. When i did the month long elimination, some of my symptoms disappeared (my rash, etc) but I felt like I still should have kept at it. I'm actually looking forward to having a solid diagnosis and knowing that there's a fix!

With the EMA IgA, what do you mean "It generally indicates a pretty advanced disease"? Would it not show up normally at an early stage? I'm kind of trying to pinpoint when my symptoms would have started, i had my 2nd child 18 months ago and I feel like things have been downhill since then for sure, but I can definitely think of other symptoms I have had before that as well. Thanks for your help, I really appreciate it. 

The EMA IgA is not an autoantibody response that first appears.  Usually the tTG IgA is positive first - it's unusual that yours wasn't.  

The tTG IgA starts attacking the villi in the intestines as an autoimmune response to ingested gluten.  With that damage, along with the gluten causing further autoimmune response, the EMA IgA attempts to wipe out the upper villi layer.  It's basically overkill.  Something is hurting the villi so it tries to wipe out that upper layer in an attempt to get an upper hand.... That's what it basically comes down to.

You've probably had celiac for a few years but your second child made symptoms more noticeable.  Even if it was just 18 months ago that you developed celiac disease, that's long enough for plenty of damage and symptoms to occur.  :(

Once a celiac goes gluten-free the EMA IgA will return to normal within a few weeks or months, whereas the tTG IgA may stay positive for many months.  The DGP tests generally return to normal within a few months too.

Sanders Rookie
Sanders
Posted
  • Author

The EMA IgA is not an autoantibody response that first appears.  Usually the tTG IgA is positive first - it's unusual that yours wasn't.  

The tTG IgA starts attacking the villi in the intestines as an autoimmune response to ingested gluten.  With that damage, along with the gluten causing further autoimmune response, the EMA IgA attempts to wipe out the upper villi layer.  It's basically overkill.  Something is hurting the villi so it tries to wipe out that upper layer in an attempt to get an upper hand.... That's what it basically comes down to.

You've probably had celiac for a few years but your second child made symptoms more noticeable.  Even if it was just 18 months ago that you developed celiac disease, that's long enough for plenty of damage and symptoms to occur.  :(

Once a celiac goes gluten-free the EMA IgA will return to normal within a few weeks or months, whereas the tTG IgA may stay positive for many months.  The DGP tests generally return to normal within a few months too.

I was wondering about the tTg IgA being negative. I thought that was weird. Would there be a reason it was negative? Like certain medications, etc.? I'm on Armour thyroid for hypothyroid, but my understanding (diagnosed 13 years ago) is that it's NOT Hashimoto's. But now that I'm dealing with the other stuff, I'm wondering if it is, and they just didn't know what they were doing when I was diagnosed? Anyway, that's beside the point. :) Would something like that affect the outcome of the results? I guess my question is, with a positive EMA, and positive Gliadin AB IgG and IgA, would a negative tTg discount the other results?

cyclinglady Grand Master
cyclinglady
Posted

To answer your latest question.....who knows?  I tested positive on just the DGP iga (I have Hashi's and take Armour).   My TTG tests were negative, yet biopsies revealed a Marsh Stage IIIIB ( moderate to severe damage).  When tested recently, i tested exactly the same way.  Just the DGP iga was positive.  I know the TTg tests are supposed to catch the majority of celiacs, but not in my case.  I have searched the Internet for an explanation.  It does happen but the studies I found say that toddlers test out this way.  Go figure!

I say that you most likely have celiac disease.   

Sanders Rookie
Sanders
Posted
  • Author

To answer your latest question.....who knows?  I tested positive on just the DGP iga (I have Hashi's and take Armour).   My TTG tests were negative, yet biopsies revealed a Marsh Stage IIIIB ( moderate to severe damage).  When tested recently, i tested exactly the same way.  Just the DGP iga was positive.  I know the TTg tests are supposed to catch the majority of celiacs, but not in my case.  I have searched the Internet for an explanation.  It does happen but the studies I found say that toddlers test out this way.  Go figure!

I say that you most likely have celiac disease.   

I was reading that too about toddlers! So strange that it's turning out the same for us. Thanks for your help.

Sanders Rookie
Sanders
Posted
  • Author

I decided to make an appointment with a Gastro, and after getting off the phone with them, I'm more frustrated. She asked what tests were run with my doctor and I told her which were positive, and she basically said that they would run an HLA blood test to see if I have the disease markers for Celiac, but that wouldn't necessarily confirm the diagnosis either, and that the endoscopy is the only way to do that. Which I understand, but she said "most scopes we do come back negative because the damage just hasn't gotten there yet". Then she said "If you've removed gluten from your diet and had your symptoms go away, i wouldn't worry about removing rye and barley". ?? I did a whole 30, so i removed everything, but isn't gluten definitely in rye and barley? I'm getting more confused and overwhelmed. Questions:

1. what's the point of doing the genetic marker testing if I have already done the above bloodwork? If these are showing as positive and my marker comes back negative, does that mean it's not Celiac? 

2. I would really like to know if i have Celiac, vs a sensitity, i guess that is much more difficult than I imagined. I'm wondering how careful I need to be with cross contamination, etc. But I guess at the end of the day, the official diagnosis doesn't do me much good?

squirmingitch Veteran
squirmingitch
Posted

Stay away! Stay FAR away from that Gastro!!!!!! Rye & barley ARE gluten!!:blink::blink::blink: They don't know that?????:o

Disregard everything they said because they don't know their head from their behind.

Sanders Rookie
Sanders
Posted
  • Author

Stay away! Stay FAR away from that Gastro!!!!!! Rye & barley ARE gluten!!:blink::blink::blink: They don't know that?????:o

Disregard everything they said because they don't know their head from their behind.

that's what I was thinking!! In the offices defense, I was just talking to the front desk. Not the actual Doctor. But still. 

bartfull Rising Star
bartfull
Posted

If it were me I would accept the original doctor's diagnosis. If he says you have celiac you have an official diagnosis. It will be in your health records so if you ever need to go to the hospital or whatever, they will have to give you gluten-free food. (Although I have heard from some folks here that they don't anyway. :angry:)

And even if it ISN'T celiac and is "just" NCGS, you still need to be just as strict. You can get neurological damage from NCGS if you continue to eat gluten.

And also, you should get your kids tested, and your parents and siblings. All first degree relatives of a celiac should be tested every two years because it runs in families.

Sanders Rookie
Sanders
Posted
  • Author

If it were me I would accept the original doctor's diagnosis. If he says you have celiac you have an official diagnosis. It will be in your health records so if you ever need to go to the hospital or whatever, they will have to give you gluten-free food. (Although I have heard from some folks here that they don't anyway. :angry:)

And even if it ISN'T celiac and is "just" NCGS, you still need to be just as strict. You can get neurological damage from NCGS if you continue to eat gluten.

And also, you should get your kids tested, and your parents and siblings. All first degree relatives of a celiac should be tested every two years because it runs in families.

Okay, thanks. That's what I'm thinking as well. I will get my kids tested. I'm adopted, so they're the only blood I know! :) I didn't know about the every 2 years thing, so thank you for that advice!!

 

 

squirmingitch Veteran
squirmingitch
Posted

Every 2 years or sooner if symptoms present and they will have to do a gluten challenge for the testing if they have been eating gluten free.

Sanders Rookie
Sanders
Posted
  • Author

Every 2 years or sooner if symptoms present and they will have to do a gluten challenge for the testing if they have been eating gluten free.

my daughter has hives on her back and has had them for several months. I'm thinking this is the answer. 

nvsmom Community Regular
nvsmom
Posted

I was wondering about the tTg IgA being negative. I thought that was weird. Would there be a reason it was negative? Like certain medications, etc.? I'm on Armour thyroid for hypothyroid, but my understanding (diagnosed 13 years ago) is that it's NOT Hashimoto's. But now that I'm dealing with the other stuff, I'm wondering if it is, and they just didn't know what they were doing when I was diagnosed? Anyway, that's beside the point. :) Would something like that affect the outcome of the results? I guess my question is, with a positive EMA, and positive Gliadin AB IgG and IgA, would a negative tTg discount the other results?

Steroids can cause a false negative test, but that is the only edication I know of that does. (I could be wrong on that.)  

Hashimoto's is more likely to cause a false positive tTG IgA is anything. It is one of those autoimmune issues (like T1D, liver disease, crohn's and colitis) which can give a weak false positive.

BTW, I have hypothyroidism that is technically not Hashi's either. My TPO Ab was not elevated when my hypothyroidism was discovered so I was told it isn't Hashi's. :rolleyes: Apparently my thyroid spontaneously stopped working and grew nodules, but it isn't due to my autoimmune issues. Uh-huh. Riiiiiight.  ;)

That Gastro sounds incredibly ignorant.  :(  Barley and rye are fine?? He's WAY off on that.

NCGS will NEVER cause a positive EMA IgA.  That's intestinal damage. being caused by those autoantibodies and those with NCGS do not have autoantibody reaction to gluten.

The genetic markers are the DQ2 and DQ8 genes. 97% of celiacs have at least one of those genes. It is possible to test positive for celiac disease but not have the genes, although it is very unusual.

I agree with Bartfull about testing the kids every couple of years.  They'll need to do that for their entire lives (or live gluten-free).

 

Sanders Rookie
Sanders
Posted
  • Author

Steroids can cause a false negative test, but that is the only edication I know of that does. (I could be wrong on that.)  

Hashimoto's is more likely to cause a false positive tTG IgA is anything. It is one of those autoimmune issues (like T1D, liver disease, crohn's and colitis) which can give a weak false positive.

BTW, I have hypothyroidism that is technically not Hashi's either. My TPO Ab was not elevated when my hypothyroidism was discovered so I was told it isn't Hashi's. :rolleyes: Apparently my thyroid spontaneously stopped working and grew nodules, but it isn't due to my autoimmune issues. Uh-huh. Riiiiiight.  ;)

That Gastro sounds incredibly ignorant.  :(  Barley and rye are fine?? He's WAY off on that.

NCGS will NEVER cause a positive EMA IgA.  That's intestinal damage. being caused by those autoantibodies and those with NCGS do not have autoantibody reaction to gluten.

The genetic markers are the DQ2 and DQ8 genes. 97% of celiacs have at least one of those genes. It is possible to test positive for celiac disease but not have the genes, although it is very unusual.

I agree with Bartfull about testing the kids every couple of years.  They'll need to do that for their entire lives (or live gluten-free).

 

thanks for all of your help! I'm thinking I should just cancel the Gastro appointment. I can't figure out what the point of testing me for the gene would be, if my blood work is showing positives for the other things. And I can't get in till mid November with him, so it'd prob be even later than that if I were to do an endoscopy. Seems like a Long time to go before I could cut gluten out. 

I'm going to make appointments for my kids to get them tested, my daughter has had hives on her back for months now, so I'm assuming she's at least sensitive to gluten. 

And yes, that makes total sense about your thyroid just giving up and growing nodules!! ?

nvsmom Community Regular
nvsmom
Posted

Are the hives super itchy? Celiac sometimes (unfortunately) manifests as dermatitis herpetiformis which is a maddening rash.  The area beside the rash can be biopsied for celiac disease autoantibodies.  I believe those with dh have a higher rate of false negative celiac disease blood tests too, so if it is dh it could be harder to diagnose.

Squirmingitch is our resident expert in this.  She can tell you MUCH more about it than I can.

Best wishes.

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