Confused: Told I Have False Positive, No Celiac, And Severe Chronic Hayfever.

[KnightRobby]

tl;dr: I was wondering how likely it is I don't, in fact, have Celiac Disease and that this severe hayfever has caused the false positive?

 

I did the blood test (IGA, etc) for Celiac Disease and tested positive.  This was about a year ago.  I then did the endoscopy and colonoscopy with multiple biopsies which tested negative.  I then went on a Gluten-free diet and over the course of a year, actually got worse.  The doctors were baffled by this.  I've seen 2 different GI doctors who both did colonoscopies and endocoscopies with biopsies, each time showing negative results and absolutely no villi damage.

 

I kept getting worse and worse on the gluten free diet, which of course didn't make any sense.  I got rid of ALL gluten, dairy, etc - including cross contamination.  I went to an Allergist after doing research about Hayfever and cross-reactive foods (since I moved from Indiana to AZ only 2 years ago).  After doing Allergy tests, etc the Allergist has diagnosed me with a chronic and severe case of hayfever - one of the worst cases he has seen.  I am allergic to absolutely everything here in AZ it seems, so now I am starting allergy shots.

 

I then asked my GI doctor and Allergist about the negative biopsies with a positive blood test.  My GI doctor has told me it is likely a false positive, as it doesn't make any sense that I haven't improved.  I have eliminated all dairy, gluten, and allergens from my food sources.  I also asked my Allergist about it and he said the same thing - that it was a false positive.  The ER doctors agreed that it is a false positive (though this is an unreliable source of course).

 

I am on a gluten free diet and will be for the rest of my life even without a celiac diagnosis.  But I was wondering how likely it is I don't, in fact, have Celiac Disease and that this severe hayfever has caused the false positive?

 

Any opinions?

[Mum in Norway]

Do you have your actual testresults? It depends on what antibodys were positive, and 'how' positive they were

[Imac]

I am on a gluten free diet and will be for the rest of my life even without a celiac diagnosis.  But I was wondering how likely it is I don't, in fact, have Celiac Disease and that this severe hayfever has caused the false positive?

 

Any opinions?

 

I am in a similar boat. It was my allergist that discovered through blood tests that I am allergic to wheat, rye, barley, oats and even rice! This is after almost 3 years of immunotherapy for also very very bad pollen allergy. I was so bad, for decades I stopped eating peaches, apples, most fruits with pits, as I had a tingling throat reaction which was very similar to an anaphylaxis reaction. Well after immunotherapy, turns out it was just the extreme sensitivity to pollen - I can now eat all that stuff again after 3 years of allergy shots. In that light, it changed my life.

 

Back to the matter at hand, in July I got the wheat/rye/barley/oats/rice results and my allergist wants me to cut this out for 4 months. Before, though, I decided to investigate with a GI doc, as I have been having lots of GI issues (constipation, pain, bouts of D, cramps, burning) Now after an endoscopy that only revealed stomach irritation (gerd?) but negative biopsies, as well as a Prometheus test saying I am at moderate risk for developing (I have DQ8 heterozygous) but my igG and igA are normal, It seems clear I do not have Celiac. 

 

Now that I am done testing, I am starting my elimination diet (all the gluten stuff + rice) on Monday and see what my body does. I am very curious to see if it's the pollen rearing it's head again, or if I am indeed non celiac gluten intolerant. At this point, getting some relief for my symptoms would be good so I'm actually looking forward to the elimination diet.

Curious to see if you discover anything else...good luck to you!

[nvsmom]

It is extremely rae to have a false positive. Extremely... My guess would be that you do have celiac disease but you also have very bad hay fever too... Lucky you.  

 

Celiac testing tests for antibodies that will wipe out your intestines or mucosal tissue as an over reaction to a gliadin (gluten) intolerance. The tests are tisuue transglutaminase, deaminated gliadin peptides, endomysial antiabodies and sometimes the older anti-gliadin antibodies tests. The reactions usually involve immunoglobulin A or G (IgA, IgG), unlike allergies which involves IgE. It is a very separate set of reactions.

 

Occassionally some celiac tests (like tTG IgA) can indicate other hea;lth problems like diabetes, liver disease, crohn's, colitis or thyroiditis, but those cases usually involve a blood test that was barely positive and only occurs about 5% of the time a positive test happens. I have never heard of a positive celiac test being caused by an allergy... I'm not saying it couldn't happen but I've never noticed anything about that.

 

A negative endoscopy with positive blood tests, or vice versa, does happen. There are a few board members that has happened to around here. It can happen. Don't discount celiac yet; it is possible that your allergy problems are masking any improvement going gluten-free provided.

 

Good luck. I hope you feel well soon.

[KnightRobby]

Okay, that makes sense.  Thanks for the reply.  Yeah, I'm honestly confused when I get so many different answers from doctors.  Even my GI doctor doesn't know what to think, but he is certain I have severe hayfever and allergies.

 

He also said that he has seen absolutely no changes in my villi.  Everything he has seen, from both times he's went in, all show that my intestines and villi are completely intact and normal.  He said usually with someone having as much problems as me he would've seen something by now...

 

And I am definitely not discounting Gluten.  I totally agree.  I just would rather know what is going on at this point.

 

I found my test results.  Here is a more detailed examination of them when I was eating gluten:

 

WITH GLUTEN:

tTG Antibiody, IgA Celiac Panel: 138.09/20

IGA: 119

 

2 MONTHS LATER, GLUTEN FREE:

tTG Antibiody, IgA Celiac Panel: 52.00/20

Gliadin Peptide IgA: 51.69/20

IGA: 95

[answerseeker]

It is extremely rae to have a false positive. Extremely... My guess would be that you do have celiac disease but you also have very bad hay fever too... Lucky you.  

 

Celiac testing tests for antibodies that will wipe out your intestines or mucosal tissue as an over reaction to a gliadin (gluten) intolerance. The tests are tisuue transglutaminase, deaminated gliadin peptides, endomysial antiabodies and sometimes the older anti-gliadin antibodies tests. The reactions usually involve immunoglobulin A or G (IgA, IgG), unlike allergies which involves IgE. It is a very separate set of reactions.

 

Occassionally some celiac tests (like tTG IgA) can indicate other hea;lth problems like diabetes, liver disease, crohn's, colitis or thyroiditis, but those cases usually involve a blood test that was barely positive and only occurs about 5% of the time a positive test happens. I have never heard of a positive celiac test being caused by an allergy... I'm not saying it couldn't happen but I've never noticed anything about that.

 

A negative endoscopy with positive blood tests, or vice versa, does happen. There are a few board members that has happened to around here. It can happen. Don't discount celiac yet; it is possible that your allergy problems are masking any improvement going gluten-free provided.

 

Good luck. I hope you feel well soon.

I agree, my allergist diagnosed me as chronic Atypical to many allergens. I've been gluten free since July and have little to no improvement in my fatigue, headaches, body aches, and asthma. My GI issues are completely resolved but I'm still battling inflammation and I belive it's due to chronic allergies. So yes I think it can mask improvement on a gluten-free diet

[answerseeker]

Okay, that makes sense. Thanks for the reply. Yeah, I'm honestly confused when I get so many different answers from doctors. Even my GI doctor doesn't know what to think, but he is certain I have severe hayfever and allergies.

He also said that he has seen absolutely no changes in my villi. Everything he has seen, from both times he's went in, all show that my intestines and villi are completely intact and normal. He said usually with someone having as much problems as me he would've seen something by now...

And I am definitely not discounting Gluten. I totally agree. I just would rather know what is going on at this point.

I found my test results. Here is a more detailed examination of them when I was eating gluten:

WITH GLUTEN:

tTG Antibiody, IgA Celiac Panel: 138.09/20

IGA: 119

2 MONTHS LATER, GLUTEN FREE:

tTG Antibiody, IgA Celiac Panel: 52.00/20

Gliadin Peptide IgA: 51.69/20

IGA: 95

Your antibodies did go down after 2 months gluten free, so that is a change. Have you been on prednisone for your allergies by any chance during any of your endoscopies?

[KnightRobby]

No, no predniisone.  I am seriously wondering about asking about it though.  I know there are a ton of side effects.  Do you think it would be worth checking into and how long should I be on something like prednisone?  It seems like my doctor should've mentioned this before, but right now I am anemic on top of everything and have low WBC's (I'm getting retested for CBC's and vitamins tomorrow). 

 

Today is the start of my allergy shots and we'll see how that goes, but that is more of a long-term treatment over a year.  I am wondering about a short-term treatment with prednisone.

[Celtic Queen]

Have you checked into Histamine Intolerance? Some of the other community members here can tell you more about it as they have more experience with it.  It is something I suspect I might have. 

 

I've always had bad allergies myself.  I have been gluten free for 2 years and felt a lot better at first, but now that the gluten is out of my system, other issues are coming to the forefront.  That's when I started suspecting issues with histamine.  It makes sense for me.  Hope you get it figured out.

[answerseeker]

No, no predniisone. I am seriously wondering about asking about it though. I know there are a ton of side effects. Do you think it would be worth checking into and how long should I be on something like prednisone? It seems like my doctor should've mentioned this before, but right now I am anemic on top of everything and have low WBC's (I'm getting retested for CBC's and vitamins tomorrow).

Today is the start of my allergy shots and we'll see how that goes, but that is more of a long-term treatment over a year. I am wondering about a short-term treatment with prednisone.

I was asking about the prednisone because it can heal the vili and give a negative biopsy. That's what happened to me, and I ended up being diagnosed 3 months later with celiac after negative results while on it.

I've been on it 4 times in the last year. I personally hate it, yes it gets the job done but the side effects are horrible. My moods changed and I felt out of sorts while on it. But the sides of my nose that are always swollen were normal and the dark circles under my eyes were gone. But after about 3 months it all comes back again so it seems it only really works best if on it low dose for a long time which I'm not willing to do. Mine was mainly for my asthma and it was bursts of 10 day rounds plus in my IV when I was hospitalized

[KnightRobby]

I've heard of Histamine Intolerance but am I correct in saying that it is such a new idea that many doctors don't support it?  I'd like to really look into Histamine Intolerance because I've read up on it and sounds like I have it.  I just don't know if doctors are up to date on the latest research.  What tests would I need done to find out about histamine intolerance? 

 

I started my allergy shots today.  No big deal thankfully.  I only had some minor swelling in my throat, which I've had before.  I just hope I can feel better.  I'm really curious about this histamine intolerance though as I have tried doing research on it in the past, but it sounds a bit hard to diagnose.

 

Yeah, the Prednisone sounds like a pain.  I've heard good and bad things about it, but it seems like it causes more problems than solutions.  Did you ever give allergy shots a try?

[answerseeker]

I just got off of allergy shots, I tried them for 6 months but didn't see much of a difference, plus because I'm celiac and have vitamin deficiencies I would just end up with huge bruises from the shots. Not pretty, they would just start to heal then it was time for the next week shot!

[Celtic Queen]

 

I've heard of Histamine Intolerance but am I correct in saying that it is such a new idea that many doctors don't support it? I'd like to really look into Histamine Intolerance because I've read up on it and sounds like I have it. I just don't know if doctors are up to date on the latest research. What tests would I need done to find out about histamine intolerance?

 

Yeah, I think it is a pretty new idea.  I'm not really sure how many doctors in the U.S. are aware of it yet.  Unfortunately I'm just getting into researching it myself, so I don't have a whole lot of answers yet about testing for it.  But I know there are several people on the boards who have it, so maybe they'll chime in soon.  I just bought "What HIT Me", which is a book that I think IrishHeart recommended.  It's written by a journalist who has histamine intolerance.  So far I can really relate to a lot of it. 

[GF Lover]

I've heard of Histamine Intolerance but am I correct in saying that it is such a new idea that many doctors don't support it?  I'd like to really look into Histamine Intolerance because I've read up on it and sounds like I have it.  I just don't know if doctors are up to date on the latest research.  What tests would I need done to find out about histamine intolerance? 

 

I started my allergy shots today.  No big deal thankfully.  I only had some minor swelling in my throat, which I've had before.  I just hope I can feel better.  I'm really curious about this histamine intolerance though as I have tried doing research on it in the past, but it sounds a bit hard to diagnose.

 

Yeah, the Prednisone sounds like a pain.  I've heard good and bad things about it, but it seems like it causes more problems than solutions.  Did you ever give allergy shots a try?

You may want to PM IrishHeart about Histamine Intolerance.  She is very well informed on the subject.  Also, this subject was just discussed recently.  Do a Forum search and you should be able to fine the resources she has already given.

 

Colleen