Positive Blood work

[CMC74]

Hi, 

I am new here and I apologize if this has been answered before.  Over the past 4 years my doctor has tested me for the IGA antibiodies (I think that is it) during my annual physical and my blood work has come back positive 3 times out of 4.  I don't have any gastrointestinal symptoms but she has told me to stay off of gluten since I have headaches and some other minor issues.  When I recently looked at the patient portal my chart said "Celiac" on it. I know it can't be confirmed without a biopsy, but I am scared to death to do it and would rather just stay gluten free. 

I was just wondering if anyone else has had several positive blood results and ended up not having Celiac?  

Thank you!

 

 

[ravenwoodglass]

Welcome to the board. The celiac blood tests are pretty specific to celiac. Doctors are starting to acknowledge that positive blood work is diagnostic. While ideally you should have had an endoscopy after you had positive blood your doctor may have feared that you would show a false negative on the endo. You could go back on gluten for a couple months and get an endo done but you do risk that false negative and with repeat positive IGA tests it is pretty certain you are celiac. Celiac has a lot of different symptoms and there are people with celiac that never have tummy issues that they consider abnormal.  Those minor issues could become more major if you ignoser the postive blood work you have had. Do read the Newbie 101 thread at the top of the coping section as it has a lot of good info on what you need to do to keep safe and healthy.

[GFinDC]

Hi cmc74,

I wrote post to you earlier but it seems to have disappeared.

You can ask your doctor to do the full celiac disease test panel, including the DGP IgA and DGP IgG now.  They are very specific tests for gliaden antibodies.  Often a doctor will do just the ttg IgA screening test, but there are more tests.

[CMC74]

Thank you both.  The patient portal is down, but if I can access it I can see exactly what blood work has been done. I will also read the newbie section. 

[squirmingitch]

How long have you been gluten free? How many years ago did your doc tell you to stay off gluten? I'm just wondering because it's not clear in your original post. Have you been gluten-free for 4 years? You say for 3 out of 4 years the IgA has come back positive. Which year was it negative?

For an endoscopy you have to eat gluten every day for 2 weeks.

[CMC74]

2 hours ago, squirmingitch said:

How long have you been gluten free? How many years ago did your doc tell you to stay off gluten? I'm just wondering because it's not clear in your original post. Have you been gluten-free for 4 years? You say for 3 out of 4 years the IgA has come back positive. Which year was it negative?

For an endoscopy you have to eat gluten every day for 2 weeks.

Well, I have been on and off the gluten free diet over the past 4 years. I think I generally do 4-5 months then cave around the holidays and also in the summer when we travel overseas for a month I end up eating gluten then go back to gluten-free when I get home.  I  also lose weight on the gluten-free diet which I don't need to do and a reason why I start eating everything again.  After my yearly physicals when I get the reminder my blood work is still positive and I could get cancer if I continue to eat gluten I stop again. Since I don't react when I do eat gluten it makes it a bit harder.  The first year (4 years ago) my doctor did a test which was positive and she repeated it to make sure, the next year she checked again - still positive,  year after that it was negative then next time it was positive again.   

In the meantime, I had some other symptoms such as abnormal hearing loss, which led to blood work resulting in a positive ANA.  I followed up a few months later and had a positive (or maybe borderline) 6 result for Lupus.  Both should be positive at the same time I was told and mine were not. Either way, I go to the Rheumotologist on Dec. 16th for possible Lupus too.   I now plan to stay gluten free since there are too many indicators that I have Celiac.  I am 42 by the way and no family history that I know of. 

 

[zenjess1980]

I also have positive blood work, but ended up having negative biopsy. I literally had a doctor tell me "I don't quite understand your results. You'll probably be fine continuing to eat gluten."

... and so began a long journey. VERY long story short, I ended up getting duodenal non Hodgkin lymphoma (cancer) which is apparently related to untreated Celiac Disease! Imagine my shock, anger, disappointment, etc.!

From what I understand the blood work they do is very specific to diagnosing Celiac. I am not certain if you can get a false positive. Perhaps others can help you out and answer that for you.

In the end, I say better to be safe than sorry! *hugs* Best wishes!

[CMC74]

10 minutes ago, zenjess1980 said:

I also have positive blood work, but ended up having negative biopsy. I literally had a doctor tell me "I don't quite understand your results. You'll probably be fine continuing to eat gluten."

... and so began a long journey. VERY long story short, I ended up getting duodenal non Hodgkin lymphoma (cancer) which is apparently related to untreated Celiac Disease! Imagine my shock, anger, disappointment, etc.!

From what I understand the blood work they do is very specific to diagnosing Celiac. I am not certain if you can get a false positive. Perhaps others can help you out and answer that for you.

In the end, I say better to be safe than sorry! *hugs* Best wishes!

I'm sorry that happened. I hope you are in remission now and doing well. It is very confusing and doctors are often not clear enough. My doctor responded to me with this " I got your labs everything looks great except you are still gluten allergic. Thus I would highly recommend off all gluten as those people who are gluten allergic can actually develop a rare form of small intestine cancer with persistant use. So I would be careful. "  

She has never been clear that the blood work is very specific and says to "be careful."  She also told me the ONLY  way to confirm is with a biopsy.  I am grateful for this forum and the input I have been getting.  I am scared to death of cancer since my Dad died of esophageal cancer (who know if he has celiacs or not!?) and my aunt and uncle also from cancer within one year of each other.  I plan to now stay gluten-free for life and also get my 6 year old daughter tested - she throws up more than any child I have ever heard of and it all started when she began eating real food at 9 months old :-(

Thanks again!

 

[zenjess1980]

Thanks. And yes I am 2 years Cancer free -- on December 16th, and doing pretty well

 

Yea, it's a shame doctors aren't more clear on these things and do not have clear communication either! I have to say this forum has been a fantastic help. I'm glad you are staying gluten free!!!! Best wishes to you and your daughter!

[CMC74]

7 minutes ago, zenjess1980 said:

Thanks. And yes I am 2 years Cancer free -- on December 16th, and doing pretty well

 

Yea, it's a shame doctors aren't more clear on these things and do not have clear communication either! I have to say this forum has been a fantastic help. I'm glad you are staying gluten free!!!! Best wishes to you and your daughter!

That's fantastic. Congratulations! And, thank you very much :-) 

[cyclinglady]

16 minutes ago, CMC74 said:

I'm sorry that happened. I hope you are in remission now and doing well. It is very confusing and doctors are often not clear enough. My doctor responded to me with this " I got your labs everything looks great except you are still gluten allergic. Thus I would highly recommend off all gluten as those people who are gluten allergic can actually develop a rare form of small intestine cancer with persistant use. So I would be careful. "  

She has never been clear that the blood work is very specific and says to "be careful."  She also told me the ONLY  way to confirm is with a biopsy.  I am grateful for this forum and the input I have been getting.  I am scared to death of cancer since my Dad died of esophageal cancer (who know if he has celiacs or not!?) and my aunt and uncle also from cancer within one year of each other.  I plan to now stay gluten-free for life and also get my 6 year old daughter tested - she throws up more than any child I have ever heard of and it all started when she began eating real food at 9 months old :-(

Thanks again!

 

Just make  sure you daughter gets the complete panel.   Often  providers only allow first-line doctors (GP, PCP) to only order the TTG tests.  Kids often test better on the DGP.  That may mean insisting on a GI referral.  This should not be an issue since  you had positives.  You can see why now that an endoscopy can help in more ways than one (firm diagnosis and thrfore helping first degree relatives, etc).  

[CMC74]

Will do.  My Mom is overseas and has had issues all her life and is planning to get tested too. I thought she had been tested because she went in and had several scopes but no biopsy, just a "visual inspection! "  Kind of unbelievable!