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

Discussion in 'General Allergy Info' started by garbageman, Oct 17, 2014.

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    garbageman New Member

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    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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    AllergyGuy Administrator

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    That's a very detailed post.... I feel bad that I can't offer any information as I'm not a doctor and it seems you have seen many.

    The only thing I can suggest is to ask a rheumatologist that you trust. I think they are the docs to answer your questions.

    Personally, I don't think they would be hiding anything from you but you should make sure everything is fine. I do understand that the elevated IG levels could be explained by different issues. I think it's wise to rule them out.

    Good luck and wish I could help more.
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    garbageman New Member

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    Thank you for commenting ...


    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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    garbageman New Member

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    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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    AllergyGuy Administrator

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    Once again, I'm at a loss....

    I can understand how you would get these tests and Google search for answers. But, I think you need a doctor that's willing to sit down with you and review your tests and your research.

    I just don't have the experience that can help you.

    I will say that it's easy to panic after researching in the internet. I would relax and try to start ruling things out as you can.

    Good luck
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    garbageman New Member

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    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
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    AllergyGuy Administrator

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    Hi, glad you're back...

    Once again, I just can't answer the specific questions you have. But, I will give you my opinion on a few issues...

    I think the biopsy is the gold standard to determine if you have Celiac. The blood test, IMO, helps determine if you should have the biopsy done.

    I don't think staying off gluten will cure Celiac so you can start eating gluten again in a year.

    Yes, some people have different reactions to gluten so it's possible you can eat some in moderation. But, it's also likely that it will do damage even if you don't have symptoms that you can detect.

    Honestly, I think docs are quick to diagnose and move on to the next patient. Esp. if the patient is what they may describe as "difficult" case...

    I have heard of people changing their diet and repairing their gut and then being Celiac free. But, I don't know specifics or whether it's even true.

    Best of luck.
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    garbageman New Member

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    Good Update! Need Your Advice!

    Okay everyone, I just got back my results for my both my Genetic Celiac and Immunofixation, Serum TESTS.

    Immunofixation, Serum:

    No monoclonal protein identified.

    HLA Typing for Celiac Disease:

    The patient has one of the HLA-DQ variants associated with celiac disease. More than 97% of celiac disease patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. However, 39% of the general U.S. population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or DQ8 or both variants is not per se diagnostic of cecliac disease. Genetic counseling as needed.

    HLA-DQ2 – Negative
    HLA-DQ8 – Positive
    HLA-DQA1* – 01
    HLA-DQA1* – 03
    HLA-DQB1* – 0302
    HLA-DQB1* – 0503

    Both My Doctor’s Recommendations:

    Doctor 01 – Internal Medicine

    Says that my Peptide IgA = 20 means that I have a gluten sensitivity and that I should go on a gluten free diet. Also said my IgA = 680 is of no significance because it has stabilized and actually lowered from 710 to 680.

    Doctor 02 – GI Doctor

    Says my Genetic Test doesn’t mean anything and that the only way to find out for sure is to stay on gluten and perform a Biopsy. I almost feel like he is trying to sell me a Biopsy but I could be wrong.

    Questions:

    1-Not sure what the results mean, can I get Celiac or Not? Is it in my genes, I guess it is, I’m one of those 39%. Maybe if I was one of the 71%, I guess I would have nothing to worry about.
    2-Do I go off gluten or do I stay on it?
    3-My Father never got the Biopsy done because he did not want to risk a procedure, he was very confident that when he got off gluten that he felt better overnight. Should I just go down the same path as him? I mean if I do have the small possibility to get it, why even risk it. Just go gluten free, right?

    Help!

    Please help me to interpret these results and give me guidance on what to do. Thank you.
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    garbageman New Member

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    P.S. I forgot to mention that I have been gluten free 2-3 weeks now just trying it out and I feel absolutely amazing. I mean it’s like night and day. I use to feel sluggish, sometimes rarely I would get a slight pain right before going to the bathroom in my lower intestine, I would have diary sometimes, IBS problems, whatever, nothing seriously hardcore, never serious main or major pain, just a lot of discomfort, I mean sometime I would be fine and sometimes not. As of right now I have had zero issues with my gut, bloating, gas, pain, discomfort, I mean it’s like I’m a new person. So I guess I diagnosed myself. I mean I could do a Biopsy and stay on gluten like one of my Doctors say, but what’s the point? I have it possibly in my genes and I feel amazing. Just probably need to go Gluten Free!

    Let me know what you think!
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    garbageman New Member

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    Last main point! Question/Theory?

    So here is why I started this whole Journey. I wanted to know if I could get Celiac or have Celiac. The reason being is because my wife is pregnant and we are going to be have 2-3 kids. I wanted to know if I am going to have to be that Dad that is like I can’t have that piece of pizza because it has gluten in it. Or have they ask why Daddy are you not eating a piece of pizza. I know that this is a lame example but I mean just wanted to be sure that I had to go this direction.

    That’s not my main question.

    My Theory is that Gluten intolerance is like smoking, or drinking. Yes both can ultimately kill you and make sure very sick but if you just smoke a little and drink a little you probably are not going to die. Yes we can debate this a million ways to Sunday but I know if for example you are just a social drinker you should be fine.

    This is like Gluten. I think I can go gluten free for a year and let my inner lining heal 100%. Then re-introduce gluten into my system on extremely small amounts like breaded fish, or the occasional hamburger, but never binge on it with rolls, pizza, subway sandwiches, and tons and tons of pasta like I have been doing just recently.

    The only strange thing here is that I have read peoples post online to where Celiac is extremely embarrassing and hard. To where some people can’t have a single trace of gluten in their diet ever. They have to even ask if they use the same kitchen tools for their non-gluten cooking because they are worried that they might have a trace of gluten on it. Maybe some people react differently or have the pain like my dad and have to avoid, I don’t know. I do know that even my dad has a little gluten every now and then and he is fine.

    So my main question is. I know that gluten can damage your system without you even knowing it, or sign of any systems. But how bad is it? I have asked my Doctor about this and he said that it is impossible to be completely pure. That you just go on a gluten diet and eat it at least as possible. THAT CAME FROM MY DOCTOR.

    So is my theory right? Can you go gluten free and just have a little once in a blue moon, or will you die? Could you develop cancer secretly in your gut because you had a piece of pizza or a subway sandwich a few times a year? Without even knowing it?

    Or can you heal for like a year, get your system strong again, and just cheat or have a piece of gluten once in a blue moon, because my dad is doing that right now. Or is he going to die?

    I am not taking about the symptoms here. I mean at least we know what it is. I mean if it is gluten, and you have a strong system, if you eat it will you just have to deal with the aggravation of the symptoms if you eat it? Seems to me this is the correct answer.

    I mean I believe some people are going to say you can’t have a spec of gluten but I think they are wrong. I think you can have a spec every now and then just like you can have a drink of alcohol every now and then. You might have a hangover later, or might have IBS, but you will not die.

    I think yes, if you leave your gluten unchecked and eat bread all the time and just live in discomfort with possible pain and ignore everything, yes you could develop something much worse. But I would never do this. I am a very detailed person and will go gluten free base on my results. Simply having the possibility of developing Celiac is enough for me, but cheating every now and then I do not think is out of the question.

    Let me know what all of you think. I really appreciate all of your help!
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    AllergyGuy Administrator

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    All the questions you ask are options for you to decide....

    I explained, IMO, the gold std. is to have the biopsy before going gluten free...The reasoning being to look at the villi and see how they look. If you want to just get of gluten. that's another way to go, but you'll never know for sure....Can you still eat gluten is you have Celiac? The best answer is no....Though, it's your life and your body....Decide what works for you. Regarding is if will do you harm, I don't know that anyone can definitively answer that...
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    garbageman New Member

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    Update!
    Someone mentioned on another forum about "Silent Celiac" this is exactly what I was needing in order to complete my research. Here is a great article about it.
    https://www.verywell.com/asymptomatic-or-silent-celiac-disease-563125
    Please read this if you are on the fence, but this is exactly what I was trying to say.
    Of course, he recommends to stay on a gluten free diet however, he says in the end its a Gamble. Its up to you. You could eat gluten once or twice a month and never get cancer, or develop something worse or you could. However, this is life, you could get cancer at any time, or get hit by a car, or smoke and get cancer or not.
    I agree with everyone, be as safe as possible, however everyone's risk tolerance is different, and I think people should respect that. If I want to increase my risk a little I should be able to do that without being criticized.
    However I really appreciate everyone's help! Thank you!
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    AllergyGuy Administrator

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    You're welcome... Best of luck.

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