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Celiac Test Done: High IGA and IGM Levels: Is This Precursor to ...

Messages
41
Last year I went to a Doctor for Low Testosterone. Only because I thought I had low testosterone. I told him that I was not feeling on top of my game and that my dad had celiac.

Well he order a complete panel of like everything. The lab bill was like 1500.00 dollars. Covered by insurance thankfully.

Everything turned out fine and I did not have low testosterone.

Except I had an elevated IGA levels. He was perplexed by this and had me see a Hematologist immediately.

I did not know these Doctors usually work at the Cancer centers so when I called I kind of freaked out and started to think I had cancer.

In any rate the Hematologist looked at me after seeing my results and just look at me like I was dumb and why am I not all enjoying my life and why are you acting like all Hypochondriac like. I was kind of offended but I did not say anything.

So far I have had like 5 complete blood work tests done. I did not feel comfortable with this Doctor entirely so I went back to my primary doctor which I have two of them and they both ran complete tests.

All test come back fine except that I have elevated IGA mainly and a little elevated IGM.

I even went to an allergist certified doctor which told me that clinically that elevated IGA means nothing.

My primary doctor says that is what just makes you, you. That these results are based on a bell curve and that sometimes people are outliers. Is this true in my case?

Questions:

What does elevated IGA mean exactly?

What does elevated IGM mean exactly?

What does “An apparent polyclonal gammopathy: IgA and IgM. Kappa and lambda

typing appear increased.” mean exactly?

What does “The SPE pattern appears essentially unremarkable. Evidence of

monoclonal protein is not apparent.” mean exactly?

Is this anything I should worry about or do I just simply ignore this and move on with my life?

Does this have anything to with allergies or chronic sinusitis possibly? Because I have read up on this and have found that it might be do to that and I do have bad sinuses.

If everything is fine now, can everything stay fine or does this mean I can develop “Multiple Myeloma” or some form of “cancer” in the future based on these results? I mean I know everyone has a chance of getting cancer I am just wondering if I have an increased chance or something based on these results.

I am asking this because it just doesn’t seem like any of my Doctors either are not really concerned by this or just don’t really know what to make of it. I wish they could just tell me exactly what it is and what I should either prepare for or not prepare for.

I have seen the following Doctors:

Two primary doctors

One hematologist

Allergist

Endocrinologist

And have also had an ultra sound and a CT scan of my pelvis and stomach because I believe I have IBS instead of Celiac Disease like my Father.

So please let me know what I should do or what I should know.

Results:

2014 – March



Immunoglobulin A, Qn, Serum 710 High mg/dL 91 − 414 01

Endomysial Antibody IgA Negative Negative 01


2014 – April

Beta Globulin 1.4 High g/dL 0.6 − 1.3 01

Immunoglobulin A, Qn, Serum 721 High mg/dL 91 − 414 01

Immunoglobulin M, Qn, Serum 271 High mg/dL 40 − 230 01

THE SPE PATTERN APPEARS ESSENTIALLY UNREMARKABLE.EVIDENCE OF MONOCLONAL PROTEIN IS NOT APPARENT.

2014 – October

Beta Globulin 1.4 High g/dL 0.6 - 1.3 01

Immunoglobulin A, Qn, Serum 753 High mg/dL 91 - 414 01

Immunoglobulin M, Qn, Serum 270 High mg/dL 40 - 230 01

P E Interpretation, S 01 The SPE pattern appears essentially unremarkable. Evidence of

monoclonal protein is not apparent.

I have the two from my primary doctor but they just say elevated IGA and they are not worried about it.

All of these blood tests have much more information and tests on them but they are all normal so I didn’t bother putting them up here.

I am just wondering is my Doctors not telling me something because they do not want to get me down or depressed. By telling me that this can turn into something or is it truly something not to worry about?

I have seen many Doctors. Do any of you know of anyone else that I can go to that can truly tell me what these results mean?

Also can you explain to me where I can post these results to where I can get some answers and also do you know anything about these results?

Thank you for your time and I greatly appreciate your feedback.
 
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halcyon

Senior Member
Messages
2,482
I'm sure there are a whole host of things that can cause elevated IgA and IgM. One of the things, which you can see they ruled out, is monoclonal gammopathy. The reason they were eager to rule this out is because it can be caused by a blood cancer.

What does “An apparent polyclonal gammopathy: IgA and IgM. Kappa and lambda typing appear increased.” mean exactly?
It means you had an increase in two different classes of antibodies. Again they are looking for evidence of blood cancer, where only one class would have been elevated.

What does “The SPE pattern appears essentially unremarkable. Evidence of monoclonal protein is not apparent.” mean exactly?
It means they did an electrophoresis test to look for an excess of a single type of protein which could be associated with cancer. They did not find anything abnormal.

Is this anything I should worry about or do I just simply ignore this and move on with my life?
I think you're the only one that can answer this question. Having ruled out the really nasty stuff, if you're still not satisfied with the answers you're getting (or not getting) then you should press on. You mentioned celiac but have you had the tests done to confirm or rule this out? My understanding is that IgA is associated with food allergies. You may want to look into food allergy testing.
 
Messages
41
I'm sure there are a whole host of things that can cause elevated IgA and IgM. One of the things, which you can see they ruled out, is monoclonal gammopathy. The reason they were eager to rule this out is because it can be caused by a blood cancer.


It means you had an increase in two different classes of antibodies. Again they are looking for evidence of blood cancer, where only one class would have been elevated.


It means they did an electrophoresis test to look for an excess of a single type of protein which could be associated with cancer. They did not find anything abnormal.


I think you're the only one that can answer this question. Having ruled out the really nasty stuff, if you're still not satisfied with the answers you're getting (or not getting) then you should press on. You mentioned celiac but have you had the tests done to confirm or rule this out? My understanding is that IgA is associated with food allergies. You may want to look into food allergy testing.

Thank you so much for helping me with this. This really helps when someone breaks it down like that.

I appreciate you.

My Father has Celiac so I could to have a sensitivity to it.

I have had the tests for Celiac and all the Doctors says that I do not have "Celiac Disease".

Some people have said that it can be linked to Allergies or like Dog's and Cat's like Dander, Sinusitis, and like you said Gluten.

I just find it so strange that one cannot simply look up "Elevated IGA" and pop here are the reasons why if you do not have anything else serious going on.

Seems like every answer to medical problems is that you either have something really bad or ... We have no idea what to tell you.

I wish we had more precise information where we could hone in on certain things.

What would you do if you were in my shoes?
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
Hi @Astrongtower

I had food allergy testing done and have eliminated a number of problem foods including foods containing gluten. My IBS has settled down and I am feeling a bit better overall. I have the genetic potential for a number of gut disorders, including celiac.

You might want to consider allergy testing or perhaps just eliminate gluten and see how you feel.

Best wishes

Andy
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I think maybe it is good to remember that if you get 100 tests done then one of them will show up a result which makes you in the top (or bottom) 1% for that test. Just as if someone were to ask you 100 questions about your appearance you would come out the only person with one particular feature (very big hands or very pale eyes or a very long neck). From what you say this IgA level is likely just to be the thing that is unusual about you, by chance. Unless it makes some sense in terms of some symptoms you have it probably means nothing at all. It certainly does not point to myeloma because it is a general rise, not just one protein. It does not point to allergy, which relates to IgE mostly.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Labtestsonline.org is a wealth of information. Here is what they write about elevated IgA levels:

http://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/

As you can see, there are many reasons (including infection and autoimmune diseases) that IgA can be elevated and that result is generally looked at in relation to the IgA and IgM levels.

I agree with @halcyon that they have ruled out the monoclonal gammopathy which is good news in terms of cancers.

I don't see your full celiac testing though. The most sensitive celiac testing is the tTG-IgA

Again, from labtestsonline.org:
  • Tissue transglutaminase antibody (tTG), IgA class — the primary test ordered to screen for celiac disease. It is the mostsensitive and specific blood test for celiac disease and is the single test preferred by the American College of Gastroenterology, according to its 2013 guidelines, as well as the American Gastroenterology Association for the detection of celiac disease in those over the age of 2 years. The IgG class of anti-tTG may be ordered as an alternative in those who have a deficiency of IgA. If the anti-tTG, IgA or IgG test is positive, then the test can also be used to monitor a person with celiac disease and to help evaluate the effectiveness of treatment; antibody levels should fall when gluten is removed from the diet. Although "tissue" is in the name of these tests, they are measured in the blood.
http://labtestsonline.org/understanding/analytes/celiac-disease/tab/test/

So you can see that the reason they ran the IgA in the first place was to make sure that you did not get a false negative due to lack of IgA.

There's a difference between a true IgE mediated wheat allergy and a wheat sensitivity. Wheat sensitivity is increasingly common and most experts suggest that those with autoimmune disorders (or suspected autoimmune disorders) or other inflammatory conditions should avoid gluten containing products.

So my suggestion would be to get the full celiac panel done...if you like...but then just consider doing a trial of gluten free. I've found it to be very helpful for my digestion overall (and I tested negative for traditional celiac disease - though traditional testing only looks at a very few of the possible problems and false negatives are extremely common).

For further reading see:

Wheat Belly, written by cardiologist Dr William Davis

http://www.wheatbellyblog.com

Podcast:

Gluten Sensitivity and Celiac Disease with Dr. Thomas O'Bryan

http://www.blogtalkradio.com/underg...n-sensitivity-and-celiac-disease-with-dr-thom
 
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halcyon

Senior Member
Messages
2,482
Sorry, I mixed up IgA and IgE. IgA is probably only related to food allergy when it comes to things like celiac and gluten.
 
Messages
41
Hi @Astrongtower

I had food allergy testing done and have eliminated a number of problem foods including foods containing gluten. My IBS has settled down and I am feeling a bit better overall. I have the genetic potential for a number of gut disorders, including celiac.

You might want to consider allergy testing or perhaps just eliminate gluten and see how you feel.

Best wishes

Andy

I see. Yes my Father has Celiac so I think I have a genetic chance of getting it as well.

I did get skin allergy testing but I have not done food allergy testing because I think they told me insurance companies do not cover food allergy testing and it is very expensive.

I wonder if I should do the Gluten DNA Blood Test because that might work. I think you can get it done for around 525.00 dollars.

I think maybe it is good to remember that if you get 100 tests done then one of them will show up a result which makes you in the top (or bottom) 1% for that test. Just as if someone were to ask you 100 questions about your appearance you would come out the only person with one particular feature (very big hands or very pale eyes or a very long neck). From what you say this IgA level is likely just to be the thing that is unusual about you, by chance. Unless it makes some sense in terms of some symptoms you have it probably means nothing at all. It certainly does not point to myeloma because it is a general rise, not just one protein. It does not point to allergy, which relates to IgE mostly.

I do not currently have any symptoms so yes I cannot match the IGA with anything at the moment. I was just wondering if something was brewing that will reveal itself later.

When you say general rise, what do you mean? I have notice that my IGA was like 670 then 710 and then 757 or something like that. So whatever it is it is rising and not stabilizing or going back down to normal levels.

I think a nurse on the internet told me sometime it might be a gluten intolerance and that it will rise and then one day just crash when the system can’t handle it anymore.

When she told me that I was thinking I wonder if I would get celiac at that point. Or maybe I could prevent me from ever having that problem if I remove gluten from my diet now ahead of time.

So you do not think it’s an allergy to dog or cat or outside allergens?

Because I have sinus problems and extremely allergic to certain grasses and weeds. So I was just wondering if that was effecting my immune system because I do inch and break out with small bumps that go away when I get in contact with dogs cats or certain grasses outside.

I wonder if any of this has to do with my IGA or IGM.

Labtestsonline.org is a wealth of information. Here is what they write about elevated IgA levels:

http://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/

As you can see, there are many reasons (including infection and autoimmune diseases) that IgA can be elevated and that result is generally looked at in relation to the IgA and IgM levels.

I agree with @halcyon that they have ruled out the monoclonal gammopathy which is good news in terms of cancers.

I don't see your full celiac testing though. The most sensitive celiac testing is the tTG-IgA

Again, from labtestsonline.org:

http://labtestsonline.org/understanding/analytes/celiac-disease/tab/test/

So you can see that the reason they ran the IgA in the first place was to make sure that you did not get a false negative due to lack of IgA.

There's a difference between a true IgE mediated wheat allergy and a wheat sensitivity. Wheat sensitivity is increasingly common and most experts suggest that those with autoimmune disorders (or suspected autoimmune disorders) or other inflammatory conditions should avoid gluten containing products.


So my suggestion would be to get the full celiac panel done...if you like...but then just consider doing a trial of gluten free. I've found it to be very helpful for my digestion overall (and I tested negative for traditional celiac disease - though traditional testing only looks at a very few of the possible problems and false negatives are extremely common).

For further reading see:

Wheat Belly, written by cardiologist Dr William Davis

http://www.wheatbellyblog.com

Podcast:

Gluten Sensitivity and Celiac Disease with Dr. Thomas O'Bryan

http://www.blogtalkradio.com/undergroundwellness/2010/07/08/gluten-sensitivity-and-celiac-disease-with-dr-thom

I think I have stumbled on those two first links and they are informative but don’t really shed a whole lot of light on if your IGA is high. Except listing what you could have. I think the Doctors have checked for all of those others things as well because I have a lot of blood tests that cover many of those things and I do not have any of those symptoms.

The closest thing I have found is something to the tune of:

Elevated iga with no reason or something like that and there is very little information on that.

So yes that is the information I need is elevated iga with no symptoms of anything else.

I did go to a GI Doctor and have had a complete Celiac panel that I can post but everything showed everything as fine and that I do not have Celiac. The GI Doctor and my Primary Doctor both say elevated IGA is nothing to think about.

One time I got a blood check by my primary Doctor and my IGA was elevated and he didn’t even tell me about it. He thought nothing of it.

I see where you are saying that I could have a gluten sensitivity and maybe that is exactly what it is. I mean like maybe I have a wheat sensitivity but not a complete gluten sensitivity.

I wonder if I go on a gluten free strict diet in 2015 and get a blood test done at the end of the year I wonder if my IGA or IGM levels would stabilize or go back to normal. Do you think this is possible or do IGA and IGM levels always stay at the point they are presently at?

I have no idea why my levels have slowly been rising though.

I will definitely check out those last two links as well. Thank you very much.

Sorry, I mixed up IgA and IgE. IgA is probably only related to food allergy when it comes to things like celiac and gluten.

So are you saying that my IGA or IGM has nothing to do with food possibly or just IGA and IGE does that?

Here is an extremely helpful primer on differentiating between celiac disease and non-celiac gluten intolerance:

https://www.gluten.net/wp-content/uploads/2013/09/allergies-and-intol-06-2011.pdf

I will definitely check out that pdf thank you.

Do you think it’s possible that I have a non-celiac gluten intolerance that could be possibly increasing my IgA and IgM levels?

Also …

Thank you everyone for all of your help this is extremely helpful and making me feel a lot better and helping me with my stress.
 
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Messages
41
Also …

Do you think I have this:

MGUS: Monoclonal Gammopahty of Unknown Significance (MGSU)

http://www.webmd.com/hw-popup/monoclonal-gammopathy-of-unknown-significance-mgus

Or has this been ruled out by my blood tests?

Or

Bacteria Sinusitis or some kind of infection or allergy that my body has been trying to fight off for over a year?

Here are a couple of links to where people having elevated IGA and the Doctors really have no idea what to make of it when no others symptoms are present.

http://www.aaaai.org/ask-the-expert/levated-IgA-with-no-explanation.aspx

http://www.aaaai.org/ask-the-expert/recurrent-respiratory-infection.aspx

Any other ideas or ways to go? I have a feeling when I see my Hematologist next week they are just going to say, looks like your results are fine, good luck be safe out there, will run a follow up next year.

That’s it with no explanation.

I just find it hard to believe that in 2014 that is the best we can do with Blood Tests.
 
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Messages
41
I apologize. I meant to also ask:

Do I have “polyclonal Gammopathy of Unknown Significance (MGUS)”? or is this even possible?

This is what my Blood Test says:

Immunofixation, Serum
01
Immunofixation Result, Serum
An apparent polyclonal gammopathy: IgA and IgM. Kappa and lambda typing appear increased.

Result:

P E Interpretation, S
01
The SPE pattern appears essentially unremarkable. Evidence of monoclonal protein is not apparent.

It doesn’t mention anything of “Monoclonal” just “Polyclonal”

That is why I was wondering if this possibly existed:

polyclonal Gammopathy of Unknown Significance (MGUS)

or when:

“The SPE pattern appears essentially unremarkable. Evidence of monoclonal protein is not apparent.”

Cancels all this out …

Do you understand what I am trying to say?
 
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Messages
41
Update ...

Hey Everyone ... I actually might have something to go on now. Someone posted some good information on another forum. I might actually think I have something like "connected tissue disease"

I do have hypo-tropic scar and small benign growths. I will try to talk to my Doctor about this.
Here is the post, tell me what you think ...

Post:

Once you get into discussions of polyclonal gammopathies, you're getting into areas that aren't really the expertise of people here. MGUS, smoldering myeloma, and multiple myeloma are monoclonal gammopathies most of the time. When it comes to figuring out what the cause of polyclonal gammopathies might be, I suspect you're going to have to get advice somewhere else.

This is a good initial source to start understanding differences between monoclonal and polyclonal gammopathies:

treatment O'Connell et al., "Understanding and Interpreting Serum Protein Electrophoresis," American Family Physician, Jan 1, 2005 (full text)

You'll see that it says the following:

It is extremely important to differentiate monoclonal from polyclonal gammopathies. Monoclonal gammopathies are associated with a clonal process that is malignant or potentially malignant. In contrast, polyclonal gammopathies may be caused by any reactive or inflammatory process, and they usually are associated with nonmalignant conditions."

This Mayo study discusses some of the usual diagnoses associated with polyclonal gammopathies:

A Dispenzieri et al., "Retrospective cohort study of 148 patients with polyclonal gammopathy," Mayo Clinic Proceedings, May 2001 (abstract)

You can find summaries of the study at these two links:

http://www.mayomedicallaboratories.com/media/articles/communique/mar2002.pdf
http://www.wikilite.com/wiki/index.php/Classification_of_diseases_with_increased_immunoglobulins

and it's also discussed (along with some other insights) by a physician here:

http://www.aaaai.org/ask-the-expert/asymptomatic.aspx

In general, these sources suggest that either liver disease or a group of conditions known as "connective tissue diseases" seem like the most likely candidates. If the source of a problem is an infection, then it could resolve itself with time.

My sense is that you should discuss your blood test results some more with your primary care physician first, perhaps sharing with them some of the results of your research (in a way that is going to be easy for them to digest quickly). Since you don't seem to be showing symptoms that are sending up major warning flags, both of you may decide to wait 6 months and then run some blood tests again. That would seem a reasonable plan to me.

If you happen to track down the source of the polyclonal gammopathy at some point, I'd certain be interested to know what it is and how it was determined.

Good luck!
 
Last edited by a moderator:
Messages
41
Hello Everyone!


I’m back and I’m still here. However, I have some questions.


My Doctor said I was on the borderline now. So I pressed him harder and asked him what did he mean and he said since I am on the max level of 20 on my Gliadin Peptide Ab, IgA that I should go Gluten Free now. As all of you know this is a big life changing thing. No more bread, pizza, sub way sandwiches, pasty, Italian food, etc. etc. The list goes on forever. I know I can make adjustments and I am prepared to, however I want to make sure I am reading all this correctly.


I am just still unsure if I will have celiac or have it now just the precursor, or do I just have an insensitivity to gluten. Keep it light but I can manage it.


I am little confused.


Do I go gluten free because I will get Celiac Disease if I don’t?


Questions…


1-Do I have Celiac Disease or not?

2-If I don’t, does it looking like I am getting it?

3-What should I do?

4-Can you be in between it? Meaning can I be sensitive to gluten but yet eat it a little bit in moderation?

5-If I went 1 year off gluten, repaired my bloodwork numbers, and had little bits of bread here and there with gluten would I be okay?

6-My dad had celiac or thinks that he does, he never officially did the biopsy, however, he had lying on the floor pain to where he wanted to kill himself. Now that he is gluten free he never has that pain again. I have never experienced anything close to this. Will I?

7-Am I missing anything else from these results, does high iga or Ab, iga mean anything else with no other symptoms?


Note:


I have ibs out bursts, low intestine problems for sure off and on. Headaches sometimes. I am thinking that if I go off gluten anyway I am probably going to feel 1000 percent better. So I am thinking about trying it anyway, however its not the end of the world and I could keep eating loads of gluten, if everything stayed the same. However, if this blood work looks like I am heading for a on the floor screaming in pain session later in life, I mine as well take care of it now.


All my other full comp labs came back normal besides my slightly high bad cholesterol.


PLEASE HELP ME BECAUSE I AM SO CONFUSED. ANYTHING YOU CAN DO WOULD BE GREATLY APPRECIATED. PLEASE SEE ALL MY RESULTS BELOW RELATING TO CELIAC.


History of results:


2011


HDL Cholesterol = 32 L


Should be >39


2013


IgA = 682 H / Should be 68 - 379


Endo = Negative


tTg Ab, IgA = 8.3 / Should be <20


Gliadin Peptide Ab, IgG = 9.2 / should be <20


Gliadin Peptide Ab, IgA = 10.0 / should be <20


tTG Ab, IgG = 6.5 / Should be <20


2014


IgA = 608 / Should be 68 - 379


Endo = Negative


tTg Ab, IgA = 11.9 / Should be <20


Gliadin Peptide Ab, IgG = 9.7 / should be <20


Gliadin Peptide Ab, IgA = 12.1 / should be <20


tTG Ab, IgG = 10.1 / Should be <20


2014 – Different Test


CCP Antibodies IgG/IgA = 12 / should be 0 – 19


2014 – Different Test


Immunoglobulin A, Qn, Serum = 710 / should be 91 – 414


2014 – Different Test


Immunoglobulin A, Qn, Serum = 721 / should be 91 – 414


Immunoglobulin M, Qn, Serum = 271 / should be 40 - 230


2014 – Different Test [Later in the year]


Immunoglobulin A, Qn, Serum = 753 / should be 91 – 441


Immunoglobulin M, Qn, Serum = 270 / should be 40 – 230


2017


Immunoglobulin A = 690 / should be 68 – 379


Endomysial Screen = Negative


tTG Ab, IgA = 2 / should be <4


Gliadin Peptide Ab, IgG = 2 / should be <20


Gliadin Peptide Ab, IgA = 20 / should be <20


tTG Ab, IgG = 1 / should be <6


Cholesterol = 123 / should be 125 – 200


HDL Cholesterol = 29 / should be >40
 

Kati

Patient in training
Messages
5,497
Hi @Astrongtower, regarding going gluten free, there are gluten free products out there that you can use unstead of gluten.

You could do a trial by going gluten free for 3 months and find out whether your symptoms are getting better. Then you decide whether you keep on going or whether there is no difference in which case you return to a normal diet.

Or you can decide it's not worth the effort. It's entirely up to you
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Hello Everyone!


I’m back and I’m still here. However, I have some questions.


My Doctor said I was on the borderline now. So I pressed him harder and asked him what did he mean and he said since I am on the max level of 20 on my Gliadin Peptide Ab, IgA that I should go Gluten Free now. As all of you know this is a big life changing thing. No more bread, pizza, sub way sandwiches, pasty, Italian food, etc. etc. The list goes on forever. I know I can make adjustments and I am prepared to, however I want to make sure I am reading all this correctly.


I am just still unsure if I will have celiac or have it now just the precursor, or do I just have an insensitivity to gluten. Keep it light but I can manage it.


I am little confused.

I have never heard of antibody tests to gliadin being diagnostic of coeliac. As I understand it in coeliac there is a T cell response to gliadin and an antibody response to tissue transglutaminase - which is a self protein unrelated structurally to gliadin. My main question would be what sort of doctor is getting these tests done. Is this a gastroenterologist in a main university centre following the accepted diagnostic route or an independent practitioner doing all sorts of dubious tests to make money? In the UK it is fairly easy to distinguish the two but I realise in the USA it may be less clear.

Whether or not you have coeliac is not going to be based primarily on antibody tests anyway and I don't think you should try to get advice from here on your diagnosis. You need to get it from a reliable physician. The tricky part is judging who is a reliable physician. The only thing I recognise in your tests is the antiendomysial antibody test (for tissue transglutaminase antibody) which seems to be negative - so that would not support coeliac disease. If you do have coeliac disease eating gluten will give you malabsorption but eating gluten will not in itself give you coeliac disease.
 
Messages
41
I have never heard of antibody tests to gliadin being diagnostic of coeliac. As I understand it in coeliac there is a T cell response to gliadin and an antibody response to tissue transglutaminase - which is a self protein unrelated structurally to gliadin. My main question would be what sort of doctor is getting these tests done. Is this a gastroenterologist in a main university centre following the accepted diagnostic route or an independent practitioner doing all sorts of dubious tests to make money? In the UK it is fairly easy to distinguish the two but I realise in the USA it may be less clear.

Whether or not you have coeliac is not going to be based primarily on antibody tests anyway and I don't think you should try to get advice from here on your diagnosis. You need to get it from a reliable physician. The tricky part is judging who is a reliable physician. The only thing I recognise in your tests is the antiendomysial antibody test (for tissue transglutaminase antibody) which seems to be negative - so that would not support coeliac disease. If you do have coeliac disease eating gluten will give you malabsorption but eating gluten will not in itself give you coeliac disease.

Exactly, maybe my Doctor doesn't know what tests to run, or he is just ordering a celiac test and just being done with it. See that is the reason I just don't want to get off gluten entirely if I do not have to.

Exactly right again, I have seen two Doctors at the same office, one is internal and one is a GI. Both to me have not really helped in this matter. My dad had to force his Doctor to figure out his issue because it seemed the Doctor doesn't even really know about it. He is in the Military.

So even if I have weak positives in my tests, doesn't mean I have celiac? I mean it does seems like the numbers are going up every time I take the test except for IGA seems like that finally went back down.

One thing to note though is I eat like trash. Burgers, fried food, I drive a lot and am on the road. For having a very sensitive system with ibs and this, i sure do not take care of it. I never eat vegetables either and barely take vitamins. I bet you anything that if I went gluten free just because, eat vegetables, work back out which I have taken a break because I got hurt, I would be on point.

To know for sure what do you think about these two tests instead of doing the nasty biopsy thing?

Like a genetic test or something:

https://enterolab.com/StaticPages/TestInfo.aspx#gene

or

https://enterolab.com/StaticPages/TestInfo.aspx#stool_gluten_sensitivity
 

Jonathan Edwards

"Gibberish"
Messages
5,256
You need to find a competent specialist who knows the diagnostic pathway for coeliac disease. As far as I know it is pretty straightforward and has nothing to do with antibody or IgA tests. The genetic test simply indicates how much you might be at risk, not whether you have the disease.
 

Kyla

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You need to find a competent specialist who knows the diagnostic pathway for coeliac disease. As far as I know it is pretty straightforward and has nothing to do with antibody or IgA tests. The genetic test simply indicates how much you might be at risk, not whether you have the disease.

uh...actually the standard screening test is an IGA antibody test (unless you have an iga deficiency).
https://celiac.org/celiac-disease/u...isease-2/diagnosing-celiac-disease/screening/
If that is positive you still need a biopsy to confirm.

@Astrongtower You NEED to be still consuming gluten for both the antibody and endoscopic tests to be accurate (you have to be causing ongoing damage or you risk a false negative), so if your doctor told you to go off gluten they don't know what they are talking about. Get an appointment with a gastroenterologist.

As someone with a first degree relative with Celiac disease and a positive antibody test there is a good likelihood you have Celiac, and since it can cause pretty much all of the symptoms of ME it is important to get this tested.

If you need any info to bring to your doctor let me know, I have been through this process multiple times as someone with Celiac disease, which was originally presumed to be refractory and causing my ME symptoms - unfortunately for me, my ME symptoms didn't improve with treatment / when my antibody and repeat endoscopy results improved - so Celiac isn't the cause of (the rest of) my illness, but for many it brings complete resolution to their illness, and of course prevents ongoing damage such as osteoporosis, anemia, bowel cancer, vitamin deficincies, lymphoma etc etc.
 

Jonathan Edwards

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uh...actually the standard screening test is an IGA antibody test (unless you have an iga deficiency).
https://celiac.org/celiac-disease/u...isease-2/diagnosing-celiac-disease/screening/
If that is positive you still need a biopsy to confirm.

I may have been unclear. What I meant was that it has nothing to do with the sort of antibody tests to gliadin being mentioned or total IgA levels. The standard screening test is the anti-tissue transglutaminase test as I indicated before and indicated in that website. But even that is not worth doing unless the person actually has relevant symptoms. Coeliac disease can be diagnosed without it (as the site indicates) and I suspect the diagnosis should remain even if the test is negative if the classic features are present.
 
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uh...actually the standard screening test is an IGA antibody test (unless you have an iga deficiency).
https://celiac.org/celiac-disease/u...isease-2/diagnosing-celiac-disease/screening/
If that is positive you still need a biopsy to confirm.

@Astrongtower You NEED to be still consuming gluten for both the antibody and endoscopic tests to be accurate (you have to be causing ongoing damage or you risk a false negative), so if your doctor told you to go off gluten they don't know what they are talking about. Get an appointment with a gastroenterologist.

As someone with a first degree relative with Celiac disease and a positive antibody test there is a good likelihood you have Celiac, and since it can cause pretty much all of the symptoms of ME it is important to get this tested.

If you need any info to bring to your doctor let me know, I have been through this process multiple times as someone with Celiac disease, which was originally presumed to be refractory and causing my ME symptoms - unfortunately for me, my ME symptoms didn't improve with treatment / when my antibody and repeat endoscopy results improved - so Celiac isn't the cause of (the rest of) my illness, but for many it brings complete resolution to their illness, and of course prevents ongoing damage such as osteoporosis, anemia, bowel cancer, vitamin deficincies, lymphoma etc etc.

Yes please give me everything you have or help in any way you can. I guess my Doctor has no clue.

Here is my main question.

My dad never did a biopsy to actually confirm he has it 100%, however, he was on the floor screaming in pain in his gut, when he eliminated gluten, it was gone. He doesn't want to do the biopsy because it is to evasive.

I believe my levels are showing me that my body is sick and tired of gluten and it wants it out, I think a nurse on one of the forums told me that how gluten intolerance works is that your body, fights and fights it and one day finally gives up. If this is the case, why keep subjecting my body to this?

Here are my only two options.

1. Roll the dice and keep eating like i do, see if my levels break the barrier and and one day I have celiac, get confirmed that I do and then go 100% gluten free. However, from what I am hearing this could not be a good idea.

1. Option two, get off gluten right now, regardless of weather I have celiac right now or not, have better bowel movements, lose weight, get my cholesterol under control, feel better, and not worry about whether I will get it or not because I wont for sure because I will have eliminated the problem. I probably wont even order the genetic test, or do the biopsy because I pretty much know what the culprit is.

So ...

What do you think of these two options? I mean I probably still should bring my lab results to a specialist on use one of the website above for a consultation.