Confused By Results?

[lalalove]

I'm a 23-year old female who has been experiencing brain fog, major fatigue and digestive issues for five or six years. I have also experienced weight gain and some stomach cramping. I recently got tested for celiac and had confusing results. The doctor told me that I came back "negative for a test that almost always comes back positive for people with celiac, but positive (very high levels) for an additional test that usually just confirms the first test". She said I had abnormal results and that none of her colleagues understood the results either. I am waiting to see a GI - but my appointment is not until mid-June! Based on my internet research, I'm wondering if I was tested for IGA (negative) and IGG (positive).

 

I was essentially diagnosed with "possible or probable celiac" for the time being. I'm really confused by these results and what I should be doing now. Should I be considering myself celiac at this point, and if so should I start cutting out gluten now? Is there any point cutting out gluten now if I have to re-introduce it two/three months before my appointment with the GI, and if I do will that effect my results on future tests? Are there any other diseases that could be causing my weird results and symptoms? My thyroid, sugar and iron blood levels were all normal. If anyone has any insight on what my doctor could have meant by my results I would love to hear your opinions. 

[LauraTX]

Did your doctor do an endoscopy with multiple biopsies to see if there is intestinal damage?  That will be a great tool in this case.  Also, if you have copies of the blood results, you can post them here and we can help you make sense of them.

 

Here is a list of testing that can be done for a Celiac diagnosis:

 

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA 

-total serum IgA and IgG (control test to ensure tests are not false negatives)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken as damage can be patchy

 

At this point, if an endoscopy hasn't been done, I would request that. (I assume that is why they referred you to the GI)  It can give information and complete the puzzle.  Also any tests on this list that have not been done, request those.  You do need to be eating gluten for testing to be accurate, so I would not go gluten-free just yet.  For the test that was negative, if it involved IgA or IgG, a total IgA/IgG needs to be done to make sure it is not a false negative result.  

 

With the appointment being in June, that is a long time to wait for sure.  If you go gluten-free for now, Open Original Shared Link for 12 weeks to have accurate bloodwork, and 2 weeks (or more depending on what research your doctor goes with) for an accurate biopsy.  So, you just have to make the call based on how important a diagnosis is to you.  Sometimes you can call and bug the scheduling people at a specialist's office, let them know you are acutely sick and see if you can be seen earlier, or put on a cancellation list.  Be super sweet and nice to them and see what they can do for you.  Also, if the GI doctor you were referred to is part of a large practice, you could ask if another doctor in the same practice has a sooner appointment.  You can also ask your regular doctor for other names of good GI's, and see if they have sooner appointments.  (Can you tell I have done this stuff too much in my life? lol)  Make sure whoever you go see is on your insurance's official list of being in network so there are no financial surprises.

 

The one test that you do not need to be eating gluten for it to be accurate, is the genetic test.  If that comes back positive, it can be a good tool in support of a borderline diagnosis.  If your wait is not able to be shortened, you can have your regular doctor order the missing tests and genetic test, just to see if more information is able to be obtained and speed things up with the GI doctor.

[lalalove]

 

Did your doctor do an endoscopy with multiple biopsies to see if there is intestinal damage?  That will be a great tool in this case.  Also, if you have copies of the blood results, you can post them here and we can help you make sense of them.

 

Here is a list of testing that can be done for a Celiac diagnosis:

 

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA 

-total serum IgA and IgG (control test to ensure tests are not false negatives)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken as damage can be patchy

 

At this point, if an endoscopy hasn't been done, I would request that. (I assume that is why they referred you to the GI)  It can give information and complete the puzzle.  Also any tests on this list that have not been done, request those.  You do need to be eating gluten for testing to be accurate, so I would not go gluten-free just yet.  For the test that was negative, if it involved IgA or IgG, a total IgA/IgG needs to be done to make sure it is not a false negative result.  

 

With the appointment being in June, that is a long time to wait for sure.  If you go gluten-free for now, Open Original Shared Link for 12 weeks to have accurate bloodwork, and 2 weeks (or more depending on what research your doctor goes with) for an accurate biopsy.  So, you just have to make the call based on how important a diagnosis is to you.  Sometimes you can call and bug the scheduling people at a specialist's office, let them know you are acutely sick and see if you can be seen earlier, or put on a cancellation list.  Be super sweet and nice to them and see what they can do for you.  Also, if the GI doctor you were referred to is part of a large practice, you could ask if another doctor in the same practice has a sooner appointment.  You can also ask your regular doctor for other names of good GI's, and see if they have sooner appointments.  (Can you tell I have done this stuff too much in my life? lol)  Make sure whoever you go see is on your insurance's official list of being in network so there are no financial surprises.

 

The one test that you do not need to be eating gluten for it to be accurate, is the genetic test.  If that comes back positive, it can be a good tool in support of a borderline diagnosis.  If your wait is not able to be shortened, you can have your regular doctor order the missing tests and genetic test, just to see if more information is able to be obtained and speed things up with the GI doctor.

 

 

Thank you so much for the response! I have not had the endoscopy done yet. I am going to request it from the GI, as well as the remaining blood tests. I did only have two blood tests results from my celiac testing, so it appears that there are others I can have done. The GI appointment is at a hospital because I do not have health insurance outside of OHIP (the general Ontario health insurance) which is likely why the wait is so long. I will give them a call and ask if there's any cancellations for a sooner appointment, because it's driving me crazy to not know what's going on. I'm too obsessive and impatient for this lol

 

I will also bring up the genetic test. I have been trying to convince my mom to get her blood work done because she has a lot of celiac symptoms. She just loops her symptoms into her anemia and my dad does the same with his diabetes. If they had it done and if either of them were positive, it would be likely that my results were meant to be positive, too? 

 

I guess for now I will not cut out gluten because I don't want to tamper with results. I've also read a few posts on here with people saying that it is harder to get back on the gluten after cutting it out, as the symptoms are worse.

[nvsmom]

Welcome to the board. 

 

Laura gave you great advice so I have nothing more to add to that.  I agree it might be nice to see if you can move things up so you can just stay on gluten, especially if they are planning on doing more blood tests.  Some celiacs find the 2-4 week gluten challenge needed for the biopsy to be more doable than the 3 months needed for blood tests.

 

For your blood tests, I have a few guesses:

1. You were positive in the tTG IgG and negative in the tTG IgA.  It is not the most common scenario because the IgA part of the immune system deals with the mucosal linings like those in our mouths and intestines, where as the IgG is a body wide defense.    There are quite a few board members around here who were positive in only IgG based tests; in fact, there have been a few recent posts on it.  If you look around you'll see more. Anyway,  if that is the case, you probably have celiac disease.  The tTG IgG is over 95% specific to celiac disease.  The ttG IgA has a sensitivity as low as 75%, so perhaps you were one of the 25% of celiacs who was missed.
2. My second guess was that you had a positive EMA iGA but a negative tTG IgA.  The EMA IgA is 98-100% specific to celiac disease but is rarely positive if the ttG IgA (most common celiac disease test) is negative.
3. The last possibility is that you had a negative tTG test but a positive DGP IgA or DGP IgG.  Again, those are very specific for celiac disease so you probably have celiac disease.

I guess my main point would be that it is not unusual for a celiac to have some negative tests.  I would even guess that it is the norm.  Even the endoscopic biopsy misses up to 1 in 5 celiacs.  I would advise you not to let the doctors dismiss a positive tests just because there was a negative one.

 

Best wishes to you.  Good luck with the gastro!

[lalalove]

Welcome to the board. 

 

Laura gave you great advice so I have nothing more to add to that.  I agree it might be nice to see if you can move things up so you can just stay on gluten, especially if they are planning on doing more blood tests.  Some celiacs find the 2-4 week gluten challenge needed for the biopsy to be more doable than the 3 months needed for blood tests.

 

For your blood tests, I have a few guesses:

1. You were positive in the tTG IgG and negative in the tTG IgA.  It is not the most common scenario because the IgA part of the immune system deals with the mucosal linings like those in our mouths and intestines, where as the IgG is a body wide defense.    There are quite a few board members around here who were positive in only IgG based tests; in fact, there have been a few recent posts on it.  If you look around you'll see more. Anyway,  if that is the case, you probably have celiac disease.  The tTG IgG is over 95% specific to celiac disease.  The ttG IgA has a sensitivity as low as 75%, so perhaps you were one of the 25% of celiacs who was missed.
2. My second guess was that you had a positive EMA iGA but a negative tTG IgA.  The EMA IgA is 98-100% specific to celiac disease but is rarely positive if the ttG IgA (most common celiac disease test) is negative.
3. The last possibility is that you had a negative tTG test but a positive DGP IgA or DGP IgG.  Again, those are very specific for celiac disease so you probably have celiac disease.

I guess my main point would be that it is not unusual for a celiac to have some negative tests.  I would even guess that it is the norm.  Even the endoscopic biopsy misses up to 1 in 5 celiacs.  I would advise you not to let the doctors dismiss a positive tests just because there was a negative one.

 

Best wishes to you.  Good luck with the gastro!

 

Thank you for your insight on my tests! It appears as though I most likely have celiac disease, which would explain a lot of the symptoms I have been experiencing for years. It's a scary thought though, so I'm definitely anxious to meet with the GI. I most definitely will not let them dismiss the positive results and I will ask for further testing so that I can get more solid answers. As I said in my other response above, I think I'll try to stay on gluten for now so that I don't tamper with my future results. In the meantime, I guess I'll read up on the gluten free diet and start trying recipes to make the transition a bit easier if it turns out that I have celiac. I'll also explore the forums a bit and see if I can find other users with similar results to mine as you suggested! Thanks

[nvsmom]

Happy to help.  

 

Thinking about having celiac disease is scary and overwhelming but in some ways it is one of the better health problems to have - at least we can be treated without drugs or invasive procedures.  Starting gluten-free diet is a tough time though.  I'm sure if you look around the boards, especially in the prediagnosis forum, you'll find many who are going through a very similar experience.

 

Hang in there.  

[lisamhanderson]

Welcome to the board. 

 

Laura gave you great advice so I have nothing more to add to that.  I agree it might be nice to see if you can move things up so you can just stay on gluten, especially if they are planning on doing more blood tests.  Some celiacs find the 2-4 week gluten challenge needed for the biopsy to be more doable than the 3 months needed for blood tests.

 

For your blood tests, I have a few guesses:

1. You were positive in the tTG IgG and negative in the tTG IgA.  It is not the most common scenario because the IgA part of the immune system deals with the mucosal linings like those in our mouths and intestines, where as the IgG is a body wide defense.    There are quite a few board members around here who were positive in only IgG based tests; in fact, there have been a few recent posts on it.  If you look around you'll see more. Anyway,  if that is the case, you probably have celiac disease.  The tTG IgG is over 95% specific to celiac disease.  The ttG IgA has a sensitivity as low as 75%, so perhaps you were one of the 25% of celiacs who was missed.
2. My second guess was that you had a positive EMA iGA but a negative tTG IgA.  The EMA IgA is 98-100% specific to celiac disease but is rarely positive if the ttG IgA (most common celiac disease test) is negative.
3. The last possibility is that you had a negative tTG test but a positive DGP IgA or DGP IgG.  Again, those are very specific for celiac disease so you probably have celiac disease.

I guess my main point would be that it is not unusual for a celiac to have some negative tests.  I would even guess that it is the norm.  Even the endoscopic biopsy misses up to 1 in 5 celiacs.  I would advise you not to let the doctors dismiss a positive tests just because there was a negative one.

 

Best wishes to you.  Good luck with the gastro!

 

 

Hi Nicole, 

 

I read your number 2 bullet point, and it seems that is my situation. I'm having a hard time finding any info on this, and my doctor wants to repeat the blood work because it doesn't add up. I appear to be negative on everything but EMA, which is a weak positive. My 3 year old daughter was just diagnosed celiac and I have hashimoto's. Any guesses? 

[kareng]

Hi Nicole, 

 

I read your number 2 bullet point, and it seems that is my situation. I'm having a hard time finding any info on this, and my doctor wants to repeat the blood work because it doesn't add up. I appear to be negative on everything but EMA, which is a weak positive. My 3 year old daughter was just diagnosed celiac and I have hashimoto's. Any guesses?

She has asked this question in her own topic here - https://www.celiac.com/forums/topic/110877-negative-on-everything-but-endomysial/#entry940407

Might be easiest to keep all the answers in one place?

[nvsmom]

I responded here:  http://www.celiac.co...al/#entry940407