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Elevated Iga From Celiac Disease Test. I Do Not Have Celiac Disease…


Astrongtower

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Astrongtower Rookie

Hello Everyone,

 

I have a curious question. What essentially is Elevated IGA? I have look all around google and there is not much information on it.

 

Let me tell you my story…

 

I went to an Endocrinologist to check on my testosterone because I am 33. I told him I was feeling okay maybe not the best so he did complete blood work on me. I did tell him that my Father was recently diagnosed with Celiac Disease so he went ahead and ran that as well.

 

Long story short … the endocrinologist said that everything was perfect on me except that my IGA was elevated. His nurse at first gave me a call and said that this is probably no big deal and he just wants me to see a specialist. I was not understanding her so she just had the Doctor call me. He said that he had no idea what this mean and that “I would just not ignore it” kind of hinting that this could be a big deal.

 

So then he refers me to a hematologist. I am like sure okay, and then I call the office and it is like, hello thanks for calling the Cancer Center … I was like what??? I have cancer now?

 

Well I see the Hematologist and he gives me this look like I am crazy and why am I even here. He is literally baffled and acting shocked because he is wondering why this test was even ran on me. Well he says give me a minute and goes back into his office just to check the latest research in their system on elevated IGA and he said there is nothing on it. He presumes to say that I am healthy as a boar. He said that he is going to send my blood work out again to see if he can duplicate it and check for other stuff to because I was complaining about joint pain but insinuated that everything is going to come normal.

 

So then the next day I went to my Primary Doctor and he did a blood test on me little under a year ago also test for Celiac Disease. I did not have those results but I got them today. They showed that I had elevated IGA and he didn’t even bother telling me about it. He was like it didn’t excite me; I guess meaning no big deal. He said IGA is such a basic protein to the system that it is just not that important. Only when levels are low is when people start getting concerned. His blood test just like the last blood test came back perfectly fine, literally everything else, the last blood work was like 1500 bucks, they must have had a field day checking on that IGA levels or something.

 

I guess the Endocrinologist was wondering how someone would have elevated IGA and not have Celiac. He did confess that he had no idea what this meant and wanted me to see a specialist. It is just the way he told me that it sounded important and that he scared me a little bit. Also the fact that when you call the Hematologist they answer the phone Cancer line how may I help you…

 

Anxiety. I think I really have anxiety I think. My doctor just prescribed me Lexapro. I have been acting such like a Hypochondriac and have been having multiple high level stressors in my life like going back to college, moving, marriage, in-laws, and not working.

 

I could have sworn I read somewhere that high IGA could be caused by Anxiety and or allergies to which I have both to where I am living at the moment. I have a lot of anxiety and there are dogs and cats where I live and when I touch one I break out in hives. Also my skin seems to be a lot more sensitive than it used to be like when I work out at the gym and sometimes I will get marks on where I press too hard on stuff. Like one time I was bent pressing and got a couple of bruises on my back that went away, and recently I just did calves raises and had some heavy weight on my shoulders have very slight red line bruise so small doesn’t seem like a big deal but just doesn’t seem like this use to ever happen before.

 

My Doctor says that I cannot lower my IGA. What if my IGA gets to like 5000 or something? My Doctor did have a very good point. He said blood test values are like a bell curve and that sometimes there can be outliers. I am currently in school and taking statistics so this makes perfect sense to me. He said that your body is just different in this area and this what makes you, you. If it was something low or critical we would take action.

 

I guess what he is saying is that this outlier is a non-essential concern.

 

Here are my results below…

 

Results 05/2013

 

Solstats

 

Result                   Range

 

IgA = 682              68-379                  

 

tTG IgA                 = 8.3      <20        

tTG IgG = 6.5      <20

Endomysial = Negative

 

Results 04/2014

 

LabCorp

 

Result                   Range

 

IgA = 710              91-414  

 

tTG IgA                 = 0-3      <2

tTG IgG = 0-5      <2

Endomysial = Negative

 

Questions:

 

What is IGA?

 

What does it mean to have High Levels of IGA?

 

What is the worst case scenario of High Levels of IGA?

 

How do I lower my IGA?

 

Is this a precursor of Cancer or anything like that? Or is this simply an outlier like the Doctor says and is absolutely nothing to worry about?

 

Help:

 

My main point is that I am going to my follow up visit in a week to the Hematologist and I know what is going to happen. He is going to say everything is absolutely fine. We ran a ton of blood work, not sure why that test was done, but have a nice day. And give me a look of why am I even here.

 

I do not want to leave still not knowing exactly what this is, and that is why I posted this topic here. I was hoping someone out there could elaborate on this so I can know that this is not a big deal. Is there anything I can do? Should I be watching out for anything? You know. So please if you can help me out and sooth my Anxiety that would be great. Thank you so much for reading and have a wonderful day.

 

Thank You!

 

 

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RMJ Mentor

I don't know abut the IgA level, but I can say that you don't need to worry about the Hematology department phone being answered as a Cancer center. I see a hematologist because I have a bleeding disorder (totally unrelated to celiac). Hematology and Oncology are grouped together as specialties. It seems that most hematologists are also oncologists, but not all oncologists are also hematologists. Hematologists deal with bleeding and clotting problems, and also blood cancers like leukemia. I always feel a little guilty in the waiting room for my hematologist because my particular bleeding disorder, now that it is diagnosed and controlled, isn't anywhere near as serious as any cancer that the other patients may have. Hope this helps.

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nvsmom Community Regular

I was in the cancer unit for a blood disorder too.... Totally freaked out some friends who came to visit me. Lol

I don't know a lot about elevated IgA except that it can be benign, or a sign of problems. Open Original Shared Link. Hopefully it is an innocent thing for you. It can be a sign of SLE, RA, liver issues or cancer. Just don't lose sight of the fact that it could be just the way you are.

I would consult dr google and bring a lst of questions to the doctor, and then monitor it if you are not satisfied.

Best wishes.

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LauraTX Rising Star

If you want to keep reaching out for answers, you may consider a doctor with a specialty in Allergy, Asthma, and Immunology.  If you can, get someone who is a "Fellow of The American Academy of Allergy, Asthma and Immunology (AAAAI)  who has FAAAAI after their name.  The only reason I know this is I have an immunodeficiency and see an immunologist who is a FAAAAI and also has a pediatric fellowship attached.  Basically they handle anything wrong with the immune system whether it is low levels, high levels, allergies, asthma, or anything else of the sort.  If it truly is nothing, they will be the person to know.

 

I personally have low levels of IGA and IGG, which means I am missing a chunk of my immune system.  I don't know what it means to have too much, though.  But if the hematologist discharges you I would definitely seek out a consultation with an immunologist.

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Astrongtower Rookie

I don't know abut the IgA level, but I can say that you don't need to worry about the Hematology department phone being answered as a Cancer center. I see a hematologist because I have a bleeding disorder (totally unrelated to celiac). Hematology and Oncology are grouped together as specialties. It seems that most hematologists are also oncologists, but not all oncologists are also hematologists. Hematologists deal with bleeding and clotting problems, and also blood cancers like leukemia. I always feel a little guilty in the waiting room for my hematologist because my particular bleeding disorder, now that it is diagnosed and controlled, isn't anywhere near as serious as any cancer that the other patients may have. Hope this helps.

 

I am certainly glad you were able to be diagnosed and your bleeding disorder controlled, that must be a great feeling. Thank you so much for contributing to my thread and yes your posted has helped. I am getting some feedback and a lot of people are telling me it is nothing to worry about. You know though that sometimes when you go to the Doctors office and they tell you straight to your face what is going on and later you leave you still feel like you don’t. That is just kind of like how I feel at the moment.

 

I was in the cancer unit for a blood disorder too.... Totally freaked out some friends who came to visit me. Lol

I don't know a lot about elevated IgA except that it can be benign, or a sign of problems. Open Original Shared Link. Hopefully it is an innocent thing for you. It can be a sign of SLE, RA, liver issues or cancer. Just don't lose sight of the fact that it could be just the way you are.

I would consult dr google and bring a lst of questions to the doctor, and then monitor it if you are not satisfied.

Best wishes.

 

I bet my friends would freak out too. That must have been funny.

 

I would think this is benign according to all of my Doctors reactions and them testing for everything else to make sure all coming back negative. I do really think that it is just the way I am because that is what my primary Doctor said. When he saw that it was high a year ago he didn’t even bother telling me he thought it was that not big of a deal.

 

If you want to keep reaching out for answers, you may consider a doctor with a specialty in Allergy, Asthma, and Immunology.  If you can, get someone who is a "Fellow of The American Academy of Allergy, Asthma and Immunology (AAAAI)  who has FAAAAI after their name.  The only reason I know this is I have an immunodeficiency and see an immunologist who is a FAAAAI and also has a pediatric fellowship attached.  Basically they handle anything wrong with the immune system whether it is low levels, high levels, allergies, asthma, or anything else of the sort.  If it truly is nothing, they will be the person to know.

 

I personally have low levels of IGA and IGG, which means I am missing a chunk of my immune system.  I don't know what it means to have too much, though.  But if the hematologist discharges you I would definitely seek out a consultation with an immunologist.

 

I do want to keep reaching out for answers, I guess I am a hypochondriac or something. I definitely think it is allergy related. I think you are on to something here. I moved in with some family and they have a dog and two cats with horrible dander and shedding problems; the hair and dander is all over the place. I used to never have any allergic reactions but if I touch this one cat or dog to much I begin to break out in small hives in that area and they quickly go away when I stop.

 

I would love to find a FAAAAI certified Doctor who is an immunologist to get to the bottom of this. I am really excited about this information and I will be finding one and setting up an appointment asap. I also have nose and eye issues a lot because of allergies as well. My theory is that my system is on high alert because of all this allergy stuff at the house. Even though it is not bad enough for me to have an inhaler or something I think I have a form of something that if I knew what it was I could get it under control and live a better life.

 

If you see your immunologist before I find one maybe you could ask him what the opposite levels mean of IGA. I am sure the Hematologist is going to discharge me because he acted so shocked to why I was even there but I guess my other Doctor just wanted me to be sure; or like he said he had no idea what that meant.

 

I really appreciate your help and please keep me in the loop to anything else that you may find. I do however believe that I am just an outlier to the bell curve on this particular measurement but let’s hope that is all that it is.

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LauraTX Rising Star

If you see your immunologist before I find one maybe you could ask him what the opposite levels mean of IGA. I am sure the Hematologist is going to discharge me because he acted so shocked to why I was even there but I guess my other Doctor just wanted me to be sure; or like he said he had no idea what that meant.

Oh, I will do that!  I should see him at my next IVIG infusion on the 17th.  Sometimes I don't get to see him but I think I didn't last time so I should see him this time definitely.  I am kind of like you, I can't just let things lie if something may possibly be wrong.  That led to me finally getting everything properly diagnosed so I could treat the problem, not just the sickly symptoms I had.  Even if it is likely nothing I would do the same!  And of course seeing an allergy specialist will help you get your allergy stuff possibly under better control so there could be a plus.

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Astrongtower Rookie

Are you seriously asking questions about a single elevated antibody on the misc?
 
I wouldn't care about it.
 
IgA is the antibody that protects your gastrointestinal tract and respiratory tract among other things.
 
In the medical setting I am in, we see elevated levels of IgA before someone turns up with either gluten-sensitivity or celiac disease. We tend to look at it as the body is in the initial stages of ramping up and fighting the incoming gluten - and it's doing a great job. But at some point it just isn't able to continue the 'fight' and the total levels of IgA plummet. Somewhere in there, we typically find that IgA-gliadin levels rise.
 
It can take many years for someone with celiac disease to actually 'show' damage in the duodenum that allows a doc to be suspicious and take biopsies that result in a diagnosis. In some cases, I've heard it takes up to 10 years. A lot could be going on during that time including the changes in IgA levels.
 
You might want to consider doing a gene test for gluten to see what genes you're carrying. It might give you an early idea of whether or not you're current elevated levels of IgA could be correlated with a diagnosis of celiac disease that may be made at a later date. Enterolab has a decent gene test. Take a look.

I don't know abut the IgA level, but I can say that you don't need to worry about the Hematology department phone being answered as a Cancer center. I see a hematologist because I have a bleeding disorder (totally unrelated to celiac). Hematology and Oncology are grouped together as specialties. It seems that most hematologists are also oncologists, but not all oncologists are also hematologists. Hematologists deal with bleeding and clotting problems, and also blood cancers like leukemia. I always feel a little guilty in the waiting room for my hematologist because my particular bleeding disorder, now that it is diagnosed and controlled, isn't anywhere near as serious as any cancer that the other patients may have. Hope this helps.


I was in the cancer unit for a blood disorder too.... Totally freaked out some friends who came to visit me. Lol
 
I don't know a lot about elevated IgA except that it can be benign, or a sign of problems. Open Original Shared Link. Hopefully it is an innocent thing for you. It can be a sign of SLE, RA, liver issues or cancer. Just don't lose sight of the fact that it could be just the way you are.
 
I would consult dr google and bring a lst of questions to the doctor, and then monitor it if you are not satisfied.
 
Best wishes.


If you want to keep reaching out for answers, you may consider a doctor with a specialty in Allergy, Asthma, and Immunology.  If you can, get someone who is a "Fellow of The American Academy of Allergy, Asthma and Immunology (AAAAI)  who has FAAAAI after their name.  The only reason I know this is I have an immunodeficiency and see an immunologist who is a FAAAAI and also has a pediatric fellowship attached.  Basically they handle anything wrong with the immune system whether it is low levels, high levels, allergies, asthma, or anything else of the sort.  If it truly is nothing, they will be the person to know.
 
I personally have low levels of IGA and IGG, which means I am missing a chunk of my immune system.  I don't know what it means to have too much, though.  But if the hematologist discharges you I would definitely seek out a consultation with an immunologist.


Oh, I will do that!  I should see him at my next IVIG infusion on the 17th.  Sometimes I don't get to see him but I think I didn't last time so I should see him this time definitely.  I am kind of like you, I can't just let things lie if something may possibly be wrong.  That led to me finally getting everything properly diagnosed so I could treat the problem, not just the sickly symptoms I had.  Even if it is likely nothing I would do the same!  And of course seeing an allergy specialist will help you get your allergy stuff possibly under better control so there could be a plus.

 
Hi there welcome to the site. Firstly all your questions can not be answered here as we are not medical professonals. Those numbers make no sense to me. I'm sure if there was anything that needed treatment your doctor would be working on it
 
Hello from a fellow statistician!
 
Following from what your doctor was saying about a bell curve, using stats look at it that way. Say we take everyone's test scores, and normalise the mean to zero. If we treat the mean as an expected value, that value has a massive standard deviation. As such you end up with a normal range within that normal distribution, which could be calculated using the T-Distribution. Now you have the statistical distribution of what's normal, and your own test result, you can use ANOVA tables to find whether your test result is statistically significantly different to the normal range, i.e. ask the question "is the two-tailed t-stat >1.96?" And the answer will be no. Normal has such a huge variance that even outside the "normal range" you're still not statistically different from normal.
 
In human terms, neither you or I are qualified to evaluate medical test results. That's what we pay doctors for, and the doctors say you're absolutely fine.
 
As to your referral, you're from the US and there is quite a suing culture over there, so even if a doctor thinks someone's fine he might refer anyone with a test result outside of normal ranges to a specialist just so in the unlikely event he is wrong it's not his responsibility. The specialist said you're absolutely fine too. Also don't forget healthcare is privately provided in the US as well so it may well be in the company's interest to run superfluous tests and make needless referrals.
 
You have my every sympathy for your shock at calling the specialist to find it was a cancer specialist, I'm guessing this is what kicked off your anxiety. I was genuinely ill to begin with on my journey, it was only doctors mentioning they needed to "rule out" strokes, brain tumours and other things that really ****ed my head up. My only advice is stop trying to evaluate information you don't have the necessary prerequisites to evaluate. Would you trust a hairdresser with a laptop with your investment decisions? Would you trust a doctor with google to represent you in court? No? Then don't trust a statistician with google to professionally evaluate your health, just because that statistician is you.
 
Now this I am VERY interested in, I tested high for serum igA level too, this was after testing high for Vitamin B12 on 3 different blood tests without supplementation..
 
I also saw a Hematologist about these readings because as I am sure you have read one immunoglobin being high might indicate multiple myeloma....however that is a fake high caused by paraprotein, I got informed that that was also tested with the other immunoglobins shortly after and was fine.
 
The hematologist found nothing wrong with me by the way, felt my nodes, spleen and tapped my whole body lol then ran lots of blood testing but all was clear and fine and I was discharged.
 
I also like you had a celiac panel done, but that was negative just the iga alone high.
 
Have you tried going gluten free? There is a lot of research going on at the moment into gluten intolerance as opposed to celiac and you could fit that catergory. The only way to know would be to cut out gluten for a few months and see how you feel. Going gluten free has helped me a lot in terms of pain and anxiety, and digestion of course.
 
I was tested for celiac disease but my test was negative, but I tried gluten free diet anyway and it made a huge difference to how I felt
 
Happy to help where I can. I'm not expert, but I have suffered from anxiety all my life and was recently diagnosed with Chronic Fatigue. I have suffered from pretty much every symptom out there including aches and pains, fatigue, irritability, brain fog, severe anxiety, unable to digest food etc etc. I have been tested for celiac and the test was negative, but I decided to change my diet anyway after reading a lot about it and how diet changes have helped many people. I'm pretty much on a primal/paleo style diet now and it has helped me so much. I wouldn't go back to eating the way I did before. I haven't found doctors to be very helpful as they don't know about a lot of this stuff and certainly aren't experts in terms of nutrition. I have found the Perfect Health Diet book to be a huge help. Going gluten free is definitely a good start. That is what celiacs are told to do - they must avoid anything with gluten in it as it attacks their bodies. So I guess eating what celiacs eat and avoiding gluten are one in the same in that respect. There is hidden gluten in a lot of processed food, so you have to be really careful. Good luck and feel free to stay in touch if you want to keep discussing as I'm pretty passionate about this stuff after finding it helped me so much.
 
I had a lot of symptoms including dizziness, visual disturbances, pains in my upper abdomen and back, muscle spasms, nausea, bloating, pins and needles, low blood sugar. Chest pains the pain got so bad I ended up in a and e a few times! I also used to feel very tired and used to fight sleep during the day at work when I stopped gluten most of it stopped although I have Ibs so still have some issues I also felt a lot more alert. Hope this helps
 
I don't think its a "false high" I mean in the case of Myeloma its a false high because its a cloned immunoglobin but as you are clear of Myeloma like me it isnt the case.
 
I have kind of put this to one side personally over the past few months but I am interested in this answer too.
 
I am unsure if it is linked to celiac disease, especially since we both have had clear celiac blood tests. But the other abnormal test found in me is Vitamin B12 was also high, I was tested for most things that cause that too and again nothing was found.
 
B12 is also absorbed via the small intestine, where celiac disease happens.
 
I sometimes get lower abdominal cramps, that can last for hours to almost a whole day which seem to be wind related but again in the area of my small intestine.
 
other so far unexplained symptoms I have are:
 
fatigue
headaches
dizziness
muscle pain/fatigue
pins and needles
high blood pressure
 
 
I am going to try to see my dr again 2moro, to talk over this yet again but one test I want is an MMA urine test to see if I have some kind of functional B12 defiency.
 
Going Gluten free seems like quite hard work, but maybe its worth a try?
 
You know these aren't "unexplained" right? These are the classic tell-tail physical signs of severe anxiety, especially when grouped together.
 
But "anxiety" isn't an explanation, it's just a word for a group of symptoms. I think the original poster and a lot of others like myself are interested in understanding the root cause, which is something doctors are usually unable to help with.
 
Astrongtower - The book I have is called The Perfect Health Diet, by Paul and Shou-Ching Jaminet. It explains a lot of this stuff and what you can do about it.
 
Well personally I think there's two aspects. Firstly, depression. My doctor suggested I was depressed and this seemed utterly obtuse. Then I took the NHS depression test, then every other online test, and every single one told me I was "severely depressed". For me, scary symptoms of what was then a genuine (but non-serious) health concern kicked all this off, and I understand it is well documented that those with depression can slip into severe anxiety following a traumatic event.
 
In terms of the symptoms of anxiety, I think these are generally well understood. Certainly the ones in the quote above are.
 
However the reason anxiety manifests in the first place, I think, is rooted in the gut. There's a massive correlation between GERD and anxiety, just as there is with ME/CFS, the physical symptoms of which are pretty much identical to anxiety. I recently read a book written by one of the members of PheonixRising called Autoimmune: the Cause and the Cure which explains a hypothesised connection between digestive issues and various autoimmune illnesses and how to overcome them. I've altered my diet accordingly the last week and feel a lot better. But I am genuinely suffering a post-viral illness as well as the anxiety, so perhaps this isn't relevant to the majority on here, but it's certainly worth a read for anyone.
 
Yes, I totally agree with you there about the auto-immune stuff and the core of health being with our guts. There is a very strong brain/gut connection and they both effect each other - so anxious feelings can bring on digestive problems and vice versa. It's very interesting as well as all the stuff they are now finding out about gut bacteria. The book you read sounds interesting and very similar to a lot of the stuff I have been reading lately. YOu would probably enjoy reading The Perfect Health Diet also as it looks at all the actual scientific evidence for nutrition and how it can cause or prevent disease and comes up with a diet based on that, which I'm pretty much following. There is also the GAPS diet which is recommended for people with auto-immune conditions and aspergers and autism etc, and is also helpful for people with IBS. Lots of info out there if you're prepared to look huh!
 
Well this book is great as it's split into two parts: first the science and then the diet. I know very little about science but I know quite a bit about stats, and I have to say the relationships hypothesised in the book definitely stand up in terms of the maths.
 
All very interesting! I do firmly believe that "normal" diets these days are bad for you, a few years ago before my daughters were born I wa sin the best shape of my life through eating better choices, like quinoa, rice, sweet potatoes instead of pasta, chips.
 
I have not read these diets you have suggested yet but I assume they are similar, no wheat? no hydro fats?, no coffee?, and more caveman style?
 
I need to get myself on track diet wise again somehow, there was a period of about 3-4 days when I didn't eat gluten and went out for sunday lunch, after eating that I went straight to tired and headache within 30 mins of finishing it.
 
as i said above I was negative for celiac.
 
I will report back again later because I have made an appointment to talk to my doctor again on this subject, about the iga and b12 levels and about the likes of cfs/me, sle, autoimmune problems. The b12 one interests me a lot at the moment because I have had 3 blood tests show levels of 800-900 when the range is 300-600ish. I do not take b12 supplements, any multi vit or even eat cereals that have added vitamins, and practically all causes of high b12 have been ruled out so its a mystery.
 
Although on some pages like pheonix rising I have seen it mentioned that the cause could actually be a functional b12 problem, the body not being able to absorb and use the b12 and it keeps getting exported back into the blood.
 
I have tried mentioning this to my doctors but have been refused tests to check this so far, one test that I know of is MMA urine test. or there is blood testing for the active form of b12 rather then the standard blood test which is active and non active forms.
 
I still believe that the b12 and iga results are linked, and most likely linked to the gut somehow.
 
I'm increasingly of the opinion that most of these modern illnesses, be they mental health problems, autoimmune problems or cancer, are far more to do with the gut than we realise. Certainly the book I mentioned above gives some intuition as to why certain diets seem to work, which before now hasn't been explained.
 
A good family friend who lives in one of the more undeveloped islands of the Caribbean was diagnosed with pancreatic cancer fifteen years ago. They don't have access to the sort of healthcare we do, so his only option was to educate himself and manage it with diet. He's alive and well and in better overall health than me!
 
Just ordered the perfect health diet, Am I right in thinking this is a Paleo diet? I am planning on starting this weekend coming and staying on it.
 
Where is the like button?!
 
From my own experience with changing diet and from what I've read, I'd say you guys are definitely on the right track. I think things are changing and there is a lot of research going into this stuff. It's a shame it's not mainstream yet, but I believe it will get there. At the moment, I want to be ahead of the game, not told by doctors that there's nothing they can do for me or offer me drugs to cover up symptoms. I know that what I'm doing is working and there are thousands of other people out there who have been helped by this approach. A couple of good websites if anyone's interested:
 
Open Original Shared Link
 
Open Original Shared Link
 
Open Original Shared Link
 
I forgot to mention the doctor I seen yesterday also tried to claim the high iga and b12 test results are "nothing" and just me, I do not agree with her in fact I think she needs to get an education as do most GPs.
 
In her case she is chasing around looking for things on me which are 500,000/1 odds like Phaeochronoctyoma and not chasing tests which have actually showed an abnormality.
 
I have had to do 2 x 24 hour urine collections after she wanted it done then researched how to do it and still gave me the wrong bottle for the tests....
 
I do not believe they will find anything in this test.
 
questions about medical test results.........whether they be MRI's or CT scans or blood work. There are several blood test results sources on the internet if you really are that curious but I strongly suggest that you follow up with your doctor for the most accurate information .
Having a consultation with a hemotologist is no different than any other specialty doctor, except he specializes in blood disorders. Unfortunately a lot of them also deal with blood cancers so that is why you got the greeting you got on the phone, not necessarily for any other reason.
 
So, here's the thing.
1. Get the test results for all these tests from the doctor.
2. Go online and find out what tests they are SUPPOSED to do for celiac disease. There are some tests, like elevated IgA, which can indicate celiac disease but may indicate other problems. There are some tests, however, that are more specific to celiac disease and if they are negative it makes it less likely (but not impossible) that you have celiac disease.
 
But what many doctors don't know (like, you wouldn't even believe how many) is that for most of the testing, a negative test for celiac disease does not mean much. There's something like a 20% false negative rate, which is why there are a number of tests done altogether. So the elevated IgA, even with okay tests results otherwise, IS a concern. Especially if it's been on both blood tests - something is going on.
 
That doesn't mean it's celiac disease, but yes, I would be looking for what can cause elevated IgA, honestly. Sometimes it can be inflammation or other issues in the gut, or recurrent infections, for example (here are a number of doctors responding to what it means, actually. You'll notice that some think it's fine, like your doc did, while others know of possible problems (like my doc did, when I had this. And had a problem, actually). Open Original Shared Link... )
 
3. A lot of specialists work at cancer centers and seeing them doesn't necessarily mean that they're seeing you for cancer. I had the same issue with my endocrinologist who works at a cancer center and it freaked me out to realize that's where I was sent, too. I think most people would be a bit concerned to reach the cancer center, seriously.
 
4. Your endo is very celiac ignorant - the specialist who deals with celiac disease is a gastroenterologist. Not a hematologist. Hem docs do blood. Celiac disease is a disease of the gut. You'll need to see a gastro to get more testing for celiac disease, if warranted.
 
Some experts in celiac disease believe that elevated IgA can be indicative of non-celiac gluten intolerance. this sensitivity/intolerance has no verified test for it, yet, but like I said, some doctors believe this may be related. Gluten free diet is the only way to test that, but once you go gluten free the celiac testing becomes invalid until you've been on gluten again for a few weeks, so you might want to take that into consideration.
 
From what I just skimmed off the net, it sounds like IgA (immunoglobin A) is just an immune system protein secreted by mucous membranes. It could certainly be linked to your allergies (stop living with pets if you're allergic to them).
 
And the cancer center thing is because your hematologist works in a cancer clinic, as most cancer patients need a hematologist as well as an oncologist.
 
This could easily be a one-off result due to something you have some into contact with in the air (allergens or pathogens), or something similar and transient upsetting your stomach.
 
The haematologist might choose to do a few more tests just to make sure it's nothing more serious, but it's not likely to be anything to worry about.
 
High IGA can be indicative of autoimmune diseases such as Rumatoid Arthritis or Celiac disease (can be high, normal or low in celiac).  Also it is high in multiple myeloma and a few other things.  See here:  Open Original Shared Link
 
I would get checked for RA and see a gastroenterologist to get a biopsy to check for celiac. Blood tests are often unreliable.  Also, celiac can develop at anytime the gene turns on (once on, always on).  That is why experts recommend that if you are at risk, to get screened every 2-3 years or if symptoms develop.
 
Also, if the testing is done is negative for celiac, then I would try to go gluten free for a trial to see if it helps you feel better.  just stay on gluten for the testing or else it will definately be negative.
 
I say to try going gluten-free bc I've seen many people at risk for celiac who do much better off gluten.  It's worth a try.  Gluten can cause terrible inflammation and joint pain.
 
 
Good luck!
 
 
And beware, most doctors are very misinformed about celiac disease!
 
               
 
    IGA can be a sign of infection, usually mucosal membranes. Gut infection maybe?? can also be from sinus infections too or chest infection, even eye infection.
 
    Dr's probably ignoring it as they dont know how to treat it, only treat something like that when its low.
 
    The problem with specialists is that they only know their speciality so anything outside of that they dont see alot of??
 
    Sometimes its best to see a good gp who has been around awhile, they have generally seen alot bigger variety of conditions then a specialist, if that makes sense.
 
    Antidepressants can be helpful but also given out to shut people up to, can make one feel better about feeling like s$#&, not a bad thing but not really getting to the issue.
 
IgA is immunoglobulin A. It is one of the groups of proteins that is part of our immune function.
 
Your results for tTG IgA, tTG IgG and Endomyosial antibodies indicate that you do not have Celiac Disease. They are results for specific antibodies that relate to Celiac.
 
Total IgA should always be tested when testing for Celiac Disease because some people have very low total IgA and that makes the results of the antibody test unreliable for those people.
 
Elevated IgA may or may not turn out to be important, you can only find that out by being tested further which is what the haemotologist will do. A haemotologist can be thought of as a blood specialist and a lot, but certainly not all, of what they do is in the area of cancer so it is not unusual that you would find one working at a cancer centre.
 
You should be treated respectfully whether this result turns out to be something that needs treating or whether the doctor does decide it is just normal for you. It is always worth ruling out problems.

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kareng Grand Master

Are you seriously asking questions about a single elevated antibody on the misc?

 

I wouldn't care about it.

 

IgA is the antibody that protects your gastrointestinal tract and respiratory tract among other things.

 

In the medical setting I am in, we see elevated levels of IgA before someone turns up with either gluten-sensitivity or celiac disease. We tend to look at it as the body is in the initial stages of ramping up and fighting the incoming gluten - and it's doing a great job. But at some point it just isn't able to continue the 'fight' and the total levels of IgA plummet. Somewhere in there, we typically find that IgA-gliadin levels rise.

 

It can take many years for someone with celiac disease to actually 'show' damage in the duodenum that allows a doc to be suspicious and take biopsies that result in a diagnosis. In some cases, I've heard it takes up to 10 years. A lot could be going on during that time including the changes in IgA levels.

 

You might want to consider doing a gene test for gluten to see what genes you're carrying. It might give you an early idea of whether or not you're current elevated levels of IgA could be correlated with a diagnosis of celiac disease that may be made at a later date. Enterolab has a decent gene test. Take a look.

 

Hi there welcome to the site. Firstly all your questions can not be answered here as we are not medical professonals. Those numbers make no sense to me. I'm sure if there was anything that needed treatment your doctor would be working on it

 

Hello from a fellow statistician!

 

Following from what your doctor was saying about a bell curve, using stats look at it that way. Say we take everyone's test scores, and normalise the mean to zero. If we treat the mean as an expected value, that value has a massive standard deviation. As such you end up with a normal range within that normal distribution, which could be calculated using the T-Distribution. Now you have the statistical distribution of what's normal, and your own test result, you can use ANOVA tables to find whether your test result is statistically significantly different to the normal range, i.e. ask the question "is the two-tailed t-stat >1.96?" And the answer will be no. Normal has such a huge variance that even outside the "normal range" you're still not statistically different from normal.

 

In human terms, neither you or I are qualified to evaluate medical test results. That's what we pay doctors for, and the doctors say you're absolutely fine.

 

As to your referral, you're from the US and there is quite a suing culture over there, so even if a doctor thinks someone's fine he might refer anyone with a test result outside of normal ranges to a specialist just so in the unlikely event he is wrong it's not his responsibility. The specialist said you're absolutely fine too. Also don't forget healthcare is privately provided in the US as well so it may well be in the company's interest to run superfluous tests and make needless referrals.

 

You have my every sympathy for your shock at calling the specialist to find it was a cancer specialist, I'm guessing this is what kicked off your anxiety. I was genuinely ill to begin with on my journey, it was only doctors mentioning they needed to "rule out" strokes, brain tumours and other things that really ****ed my head up. My only advice is stop trying to evaluate information you don't have the necessary prerequisites to evaluate. Would you trust a hairdresser with a laptop with your investment decisions? Would you trust a doctor with google to represent you in court? No? Then don't trust a statistician with google to professionally evaluate your health, just because that statistician is you.

 

Now this I am VERY interested in, I tested high for serum igA level too, this was after testing high for Vitamin B12 on 3 different blood tests without supplementation..

 

I also saw a Hematologist about these readings because as I am sure you have read one immunoglobin being high might indicate multiple myeloma....however that is a fake high caused by paraprotein, I got informed that that was also tested with the other immunoglobins shortly after and was fine.

 

The hematologist found nothing wrong with me by the way, felt my nodes, spleen and tapped my whole body lol then ran lots of blood testing but all was clear and fine and I was discharged.

 

I also like you had a celiac panel done, but that was negative just the iga alone high.

 

Have you tried going gluten free? There is a lot of research going on at the moment into gluten intolerance as opposed to celiac and you could fit that catergory. The only way to know would be to cut out gluten for a few months and see how you feel. Going gluten free has helped me a lot in terms of pain and anxiety, and digestion of course.

 

I was tested for celiac disease but my test was negative, but I tried gluten free diet anyway and it made a huge difference to how I felt

 

Happy to help where I can. I'm not expert, but I have suffered from anxiety all my life and was recently diagnosed with Chronic Fatigue. I have suffered from pretty much every symptom out there including aches and pains, fatigue, irritability, brain fog, severe anxiety, unable to digest food etc etc. I have been tested for celiac and the test was negative, but I decided to change my diet anyway after reading a lot about it and how diet changes have helped many people. I'm pretty much on a primal/paleo style diet now and it has helped me so much. I wouldn't go back to eating the way I did before. I haven't found doctors to be very helpful as they don't know about a lot of this stuff and certainly aren't experts in terms of nutrition. I have found the Perfect Health Diet book to be a huge help. Going gluten free is definitely a good start. That is what celiacs are told to do - they must avoid anything with gluten in it as it attacks their bodies. So I guess eating what celiacs eat and avoiding gluten are one in the same in that respect. There is hidden gluten in a lot of processed food, so you have to be really careful. Good luck and feel free to stay in touch if you want to keep discussing as I'm pretty passionate about this stuff after finding it helped me so much.

 

I had a lot of symptoms including dizziness, visual disturbances, pains in my upper abdomen and back, muscle spasms, nausea, bloating, pins and needles, low blood sugar. Chest pains the pain got so bad I ended up in a and e a few times! I also used to feel very tired and used to fight sleep during the day at work when I stopped gluten most of it stopped although I have Ibs so still have some issues I also felt a lot more alert. Hope this helps

 

I don't think its a "false high" I mean in the case of Myeloma its a false high because its a cloned immunoglobin but as you are clear of Myeloma like me it isnt the case.

 

I have kind of put this to one side personally over the past few months but I am interested in this answer too.

 

I am unsure if it is linked to celiac disease, especially since we both have had clear celiac blood tests. But the other abnormal test found in me is Vitamin B12 was also high, I was tested for most things that cause that too and again nothing was found.

 

B12 is also absorbed via the small intestine, where celiac disease happens.

 

I sometimes get lower abdominal cramps, that can last for hours to almost a whole day which seem to be wind related but again in the area of my small intestine.

 

other so far unexplained symptoms I have are:

 

fatigue

headaches

dizziness

muscle pain/fatigue

pins and needles

high blood pressure

 

 

I am going to try to see my dr again 2moro, to talk over this yet again but one test I want is an MMA urine test to see if I have some kind of functional B12 defiency.

 

Going Gluten free seems like quite hard work, but maybe its worth a try?

 

You know these aren't "unexplained" right? These are the classic tell-tail physical signs of severe anxiety, especially when grouped together.

 

But "anxiety" isn't an explanation, it's just a word for a group of symptoms. I think the original poster and a lot of others like myself are interested in understanding the root cause, which is something doctors are usually unable to help with.

 

Astrongtower - The book I have is called The Perfect Health Diet, by Paul and Shou-Ching Jaminet. It explains a lot of this stuff and what you can do about it.

 

Well personally I think there's two aspects. Firstly, depression. My doctor suggested I was depressed and this seemed utterly obtuse. Then I took the NHS depression test, then every other online test, and every single one told me I was "severely depressed". For me, scary symptoms of what was then a genuine (but non-serious) health concern kicked all this off, and I understand it is well documented that those with depression can slip into severe anxiety following a traumatic event.

 

In terms of the symptoms of anxiety, I think these are generally well understood. Certainly the ones in the quote above are.

 

However the reason anxiety manifests in the first place, I think, is rooted in the gut. There's a massive correlation between GERD and anxiety, just as there is with ME/CFS, the physical symptoms of which are pretty much identical to anxiety. I recently read a book written by one of the members of PheonixRising called Autoimmune: the Cause and the Cure which explains a hypothesised connection between digestive issues and various autoimmune illnesses and how to overcome them. I've altered my diet accordingly the last week and feel a lot better. But I am genuinely suffering a post-viral illness as well as the anxiety, so perhaps this isn't relevant to the majority on here, but it's certainly worth a read for anyone.

 

Yes, I totally agree with you there about the auto-immune stuff and the core of health being with our guts. There is a very strong brain/gut connection and they both effect each other - so anxious feelings can bring on digestive problems and vice versa. It's very interesting as well as all the stuff they are now finding out about gut bacteria. The book you read sounds interesting and very similar to a lot of the stuff I have been reading lately. YOu would probably enjoy reading The Perfect Health Diet also as it looks at all the actual scientific evidence for nutrition and how it can cause or prevent disease and comes up with a diet based on that, which I'm pretty much following. There is also the GAPS diet which is recommended for people with auto-immune conditions and aspergers and autism etc, and is also helpful for people with IBS. Lots of info out there if you're prepared to look huh!

 

Well this book is great as it's split into two parts: first the science and then the diet. I know very little about science but I know quite a bit about stats, and I have to say the relationships hypothesised in the book definitely stand up in terms of the maths.

 

All very interesting! I do firmly believe that "normal" diets these days are bad for you, a few years ago before my daughters were born I wa sin the best shape of my life through eating better choices, like quinoa, rice, sweet potatoes instead of pasta, chips.

 

I have not read these diets you have suggested yet but I assume they are similar, no wheat? no hydro fats?, no coffee?, and more caveman style?

 

I need to get myself on track diet wise again somehow, there was a period of about 3-4 days when I didn't eat gluten and went out for sunday lunch, after eating that I went straight to tired and headache within 30 mins of finishing it.

 

as i said above I was negative for celiac.

 

I will report back again later because I have made an appointment to talk to my doctor again on this subject, about the iga and b12 levels and about the likes of cfs/me, sle, autoimmune problems. The b12 one interests me a lot at the moment because I have had 3 blood tests show levels of 800-900 when the range is 300-600ish. I do not take b12 supplements, any multi vit or even eat cereals that have added vitamins, and practically all causes of high b12 have been ruled out so its a mystery.

 

Although on some pages like pheonix rising I have seen it mentioned that the cause could actually be a functional b12 problem, the body not being able to absorb and use the b12 and it keeps getting exported back into the blood.

 

I have tried mentioning this to my doctors but have been refused tests to check this so far, one test that I know of is MMA urine test. or there is blood testing for the active form of b12 rather then the standard blood test which is active and non active forms.

 

I still believe that the b12 and iga results are linked, and most likely linked to the gut somehow.

 

I'm increasingly of the opinion that most of these modern illnesses, be they mental health problems, autoimmune problems or cancer, are far more to do with the gut than we realise. Certainly the book I mentioned above gives some intuition as to why certain diets seem to work, which before now hasn't been explained.

 

A good family friend who lives in one of the more undeveloped islands of the Caribbean was diagnosed with pancreatic cancer fifteen years ago. They don't have access to the sort of healthcare we do, so his only option was to educate himself and manage it with diet. He's alive and well and in better overall health than me!

 

Just ordered the perfect health diet, Am I right in thinking this is a Paleo diet? I am planning on starting this weekend coming and staying on it.

 

Where is the like button?!

 

From my own experience with changing diet and from what I've read, I'd say you guys are definitely on the right track. I think things are changing and there is a lot of research going into this stuff. It's a shame it's not mainstream yet, but I believe it will get there. At the moment, I want to be ahead of the game, not told by doctors that there's nothing they can do for me or offer me drugs to cover up symptoms. I know that what I'm doing is working and there are thousands of other people out there who have been helped by this approach. A couple of good websites if anyone's interested:

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

I forgot to mention the doctor I seen yesterday also tried to claim the high iga and b12 test results are "nothing" and just me, I do not agree with her in fact I think she needs to get an education as do most GPs.

 

In her case she is chasing around looking for things on me which are 500,000/1 odds like Phaeochronoctyoma and not chasing tests which have actually showed an abnormality.

 

I have had to do 2 x 24 hour urine collections after she wanted it done then researched how to do it and still gave me the wrong bottle for the tests....

 

I do not believe they will find anything in this test.

 

questions about medical test results.........whether they be MRI's or CT scans or blood work. There are several blood test results sources on the internet if you really are that curious but I strongly suggest that you follow up with your doctor for the most accurate information .

Having a consultation with a hemotologist is no different than any other specialty doctor, except he specializes in blood disorders. Unfortunately a lot of them also deal with blood cancers so that is why you got the greeting you got on the phone, not necessarily for any other reason.

 

So, here's the thing.

1. Get the test results for all these tests from the doctor.

2. Go online and find out what tests they are SUPPOSED to do for celiac disease. There are some tests, like elevated IgA, which can indicate celiac disease but may indicate other problems. There are some tests, however, that are more specific to celiac disease and if they are negative it makes it less likely (but not impossible) that you have celiac disease.

 

But what many doctors don't know (like, you wouldn't even believe how many) is that for most of the testing, a negative test for celiac disease does not mean much. There's something like a 20% false negative rate, which is why there are a number of tests done altogether. So the elevated IgA, even with okay tests results otherwise, IS a concern. Especially if it's been on both blood tests - something is going on.

 

That doesn't mean it's celiac disease, but yes, I would be looking for what can cause elevated IgA, honestly. Sometimes it can be inflammation or other issues in the gut, or recurrent infections, for example (here are a number of doctors responding to what it means, actually. You'll notice that some think it's fine, like your doc did, while others know of possible problems (like my doc did, when I had this. And had a problem, actually). Open Original Shared Link... )

 

3. A lot of specialists work at cancer centers and seeing them doesn't necessarily mean that they're seeing you for cancer. I had the same issue with my endocrinologist who works at a cancer center and it freaked me out to realize that's where I was sent, too. I think most people would be a bit concerned to reach the cancer center, seriously.

 

4. Your endo is very celiac ignorant - the specialist who deals with celiac disease is a gastroenterologist. Not a hematologist. Hem docs do blood. Celiac disease is a disease of the gut. You'll need to see a gastro to get more testing for celiac disease, if warranted.

 

Some experts in celiac disease believe that elevated IgA can be indicative of non-celiac gluten intolerance. this sensitivity/intolerance has no verified test for it, yet, but like I said, some doctors believe this may be related. Gluten free diet is the only way to test that, but once you go gluten free the celiac testing becomes invalid until you've been on gluten again for a few weeks, so you might want to take that into consideration.

 

From what I just skimmed off the net, it sounds like IgA (immunoglobin A) is just an immune system protein secreted by mucous membranes. It could certainly be linked to your allergies (stop living with pets if you're allergic to them).

 

And the cancer center thing is because your hematologist works in a cancer clinic, as most cancer patients need a hematologist as well as an oncologist.

 

This could easily be a one-off result due to something you have some into contact with in the air (allergens or pathogens), or something similar and transient upsetting your stomach.

 

The haematologist might choose to do a few more tests just to make sure it's nothing more serious, but it's not likely to be anything to worry about.

 

High IGA can be indicative of autoimmune diseases such as Rumatoid Arthritis or Celiac disease (can be high, normal or low in celiac).  Also it is high in multiple myeloma and a few other things.  See here:  Open Original Shared Link

 

I would get checked for RA and see a gastroenterologist to get a biopsy to check for celiac. Blood tests are often unreliable.  Also, celiac can develop at anytime the gene turns on (once on, always on).  That is why experts recommend that if you are at risk, to get screened every 2-3 years or if symptoms develop.

 

Also, if the testing is done is negative for celiac, then I would try to go gluten free for a trial to see if it helps you feel better.  just stay on gluten for the testing or else it will definately be negative.

 

I say to try going gluten-free bc I've seen many people at risk for celiac who do much better off gluten.  It's worth a try.  Gluten can cause terrible inflammation and joint pain.

 

 

Good luck!

 

 

And beware, most doctors are very misinformed about celiac disease!

 

               

 

    IGA can be a sign of infection, usually mucosal membranes. Gut infection maybe?? can also be from sinus infections too or chest infection, even eye infection.

 

    Dr's probably ignoring it as they dont know how to treat it, only treat something like that when its low.

 

    The problem with specialists is that they only know their speciality so anything outside of that they dont see alot of??

 

    Sometimes its best to see a good gp who has been around awhile, they have generally seen alot bigger variety of conditions then a specialist, if that makes sense.

 

    Antidepressants can be helpful but also given out to shut people up to, can make one feel better about feeling like s$#&, not a bad thing but not really getting to the issue.

 

IgA is immunoglobulin A. It is one of the groups of proteins that is part of our immune function.

 

Your results for tTG IgA, tTG IgG and Endomyosial antibodies indicate that you do not have Celiac Disease. They are results for specific antibodies that relate to Celiac.

 

Total IgA should always be tested when testing for Celiac Disease because some people have very low total IgA and that makes the results of the antibody test unreliable for those people.

 

Elevated IgA may or may not turn out to be important, you can only find that out by being tested further which is what the haemotologist will do. A haemotologist can be thought of as a blood specialist and a lot, but certainly not all, of what they do is in the area of cancer so it is not unusual that you would find one working at a cancer centre.

 

You should be treated respectfully whether this result turns out to be something that needs treating or whether the doctor does decide it is just normal for you. It is always worth ruling out problems.

 

 

We tried to make some sense of this post and were able to fix a few parts into "quotes".  But I am afraid it didn't help much.  Sorry. I am not really sure if there is a question in there.

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LauraTX Rising Star

That looks like a spammer got ahold of that account to me.  Their "good" tactic on message boards is to throw a bunch of random S--- copied and pasted from random sources together to make it look like something and include links and hope people will click it.

 

Edit: either that or many errors made with copy/paste or drunk posting... lol

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SkyBlue4 Apprentice

Thank goodness! I thought it was just me!   :D  

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Astrongtower Rookie

I apologize I just got a lot of this information from other threads that I have created and wanted to put all the information on one post so people could read everything I know so we could relate.

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kareng Grand Master

I apologize I just got a lot of this information from other threads that I have created and wanted to put all the information on one post so people could read everything I know so we could relate.

But that isn't possible. You have only made this thread and not commented on any other people's threads.

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Astrongtower Rookie

But that isn't possible. You have only made this thread and not commented on any other people's threads.

 

From other websites ...

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kareng Grand Master

From other websites ...

 

 

Well... they don't make much sense to us and we want to help you.  Maybe you could re-post what you are asking?  Or the specific part you would like comments on?  I don't think you will get much discussion with that disjointed post.

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GF Lover Rising Star

And start a new thread with your question.  This thread is done.  If you happen to forget and pose your question in this thread, I will start a new one for you and move it myself.  Threads need to be cohesive for future readers.

 

Thanks

 

Colleen

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  • 2 years later...
casuallythere Explorer

Hello Everyone!

I had to create another account because I forgot my email and password. Please read below.

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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cyclinglady Grand Master

 

You should listen to your doctor.  

The high IgA?  For celiac testing, it is just used as a control test.  Mine was really elevated and I do not have cancer.  I do have two autoimmune disorders.  So, I personally would not worry about that result.  

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I am not a doctor, but my cholesterol totals and HDL have historically been low.  My old doctors used to congratulate me.  Now I know that it was a sign of celiac disease.  LOw cholesterol is just as bad as really high levels in terms of heart health based on recent research.   On the celiac panel, I only tested positive on the DGP IgA, yet I had moderate to severe intestinal damage.  I had no gut issues at all, but did have anemia my entire life but I also have a genetic anemia (I had two types of anemia).  Two months later after my diagnosis, I started fracturing bones doing NOTHING.

 Unchecked or untreated celiac disease can do some serious damage and some of it is irreversible.  

Finally, once a celiac, there is no cure.  Intentional glutenings are not acceptable. 

Only you can make the decision that is best for you.  

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casuallythere Explorer

See that is one of my main questions. Are you saying that if I don't have Celiac Disease right now I could not develop it in the future by staying off gluten?

Are you saying Celiac Diease can give you these other disease? RA, MS, Lupus, Hashi's or Diabetes Type 1?

What do you mean once celiac? Is there a breaking point? So if I haven't broke that plain of actually being diagnosed with celiac I might be okay to never get that if I get off of it 100% right now?

Please help me understand all of this with my results.

 

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cyclinglady Grand Master
3 minutes ago, casuallythere said:

See that is one of my main questions. Are you saying that if I don't have Celiac Disease right now I could not develop it in the future by staying off gluten?

Are you saying Celiac Diease can give you these other disease? RA, MS, Lupus, Hashi's or Diabetes Type 1?

What do you mean once celiac? Is there a breaking point? So if I haven't broke that plain of actually being diagnosed with celiac I might be okay to never get that if I get off of it 100% right now?

Please help me understand all of this with my results.

 

I am not a doctor.  It would be irresponsible of me to give out medical advice when I am not a doctor.  I only shared my personal experiences.  

I think you need to listen to your doctor.   If you do not think your doctor is giving you good advice, you should get a second opinion from a GI who specializes inceliac disease.  I also think you should talk to your parents who might be able to give you good advice.

I wish you well!  

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ironictruth Proficient

Total IGA can be elevated with autoimmune issues..so do not freak on the cancer thing. 

I can tell you I tested at a 20 and 21 on the DGP IGA twice over 18 months ago. The Celiac Disease folks at University of Chicago's website will tell you that a weak positive DGP IGA can be misleading. They also informed me of this via email, and told me a positive IGG would be more supportive of celiac.  celiac disease research Folks at Massachusetts General also informed me of the DGP not being particularly reliable.  That being said many people are diagnosed based on that blood work who end up having a positive biopsy for celiac. So it is a very useful test and more so than the older versions.  I've also done my own research and sometimes these tests can come back weakly positive in folks who are first-degree relatives of somebody with Celiac. Being a first degree relative can incr3ase your rusk of  developing the disease but it does not necessarily mean you'll get it.

 What I am saying is that with a weak positive test like that can be misleading and you really should consider doing a biopsy if you have not already done one.  I would not want you to end up in my position going gluten-free based on a primary care telling me to do so on a weak positive test and then going through tWo gluten challenges With a lot of health issues and not having a  clue if it's Celiac or something else.  you also do not want to have to go gluten free for the rest of your life if you do not need to.

 your anxiety will make this ten thousand times worse. Trust me on that one.  unfortunately you may have to go to a couple different doctors and Specialists to figure out what your symptoms are caused by.

 cycling lady is right, the best thing to do would be research celiac disease specialists in your area and go see one of them. 

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casuallythere Explorer
1 hour ago, ironictruth said:

Total IGA can be elevated with autoimmune issues..so do not freak on the cancer thing. 

I can tell you I tested at a 20 and 21 on the DGP IGA twice over 18 months ago. The Celiac Disease folks at University of Chicago's website will tell you that a weak positive DGP IGA can be misleading. They also informed me of this via email, and told me a positive IGG would be more supportive of celiac.  celiac disease research Folks at Massachusetts General also informed me of the DGP not being particularly reliable.  That being said many people are diagnosed based on that blood work who end up having a positive biopsy for celiac. So it is a very useful test and more so than the older versions.  I've also done my own research and sometimes these tests can come back weakly positive in folks who are first-degree relatives of somebody with Celiac. Being a first degree relative can incr3ase your rusk of  developing the disease but it does not necessarily mean you'll get it.

 What I am saying is that with a weak positive test like that can be misleading and you really should consider doing a biopsy if you have not already done one.  I would not want you to end up in my position going gluten-free based on a primary care telling me to do so on a weak positive test and then going through tWo gluten challenges With a lot of health issues and not having a  clue if it's Celiac or something else.  you also do not want to have to go gluten free for the rest of your life if you do not need to.

 your anxiety will make this ten thousand times worse. Trust me on that one.  unfortunately you may have to go to a couple different doctors and Specialists to figure out what your symptoms are caused by.

 cycling lady is right, the best thing to do would be research celiac disease specialists in your area and go see one of them. 

Thank you very much for the reply. See that is my thoughts exactly, I am a first generation version and was wondering if I just struggle with gluten like a sensitivity verse disease. Here are two tests that I could take that are much less abrasive that the biopsy. Genetic Tests. Do you know if those will give me 100% accuracy of letting me know if I will have it or do have it Celiac?

Also based on these results, I guess we cannot say for absolute sure I have Celiac or not.

Here are the places I can go for test:

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or

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What do you think of these Genetic Tests. I think this would be much less abrasive easy to do and affordable. However, I do not want do anything unnecessary. 

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kareng Grand Master
25 minutes ago, casuallythere said:

Thank you very much for the reply. See that is my thoughts exactly, I am a first generation version and was wondering if I just struggle with gluten like a sensitivity verse disease. Here are two tests that I could take that are much less abrasive that the biopsy. Genetic Tests. Do you know if those will give me 100% accuracy of letting me know if I will have it or do have it Celiac?

Also based on these results, I guess we cannot say for absolute sure I have Celiac or not.

Here are the places I can go for test:

Open Original Shared Link

or

Open Original Shared Link

What do you think of these Genetic Tests. I think this would be much less abrasive easy to do and affordable. However, I do not want do anything unnecessary. 

Genetic tests do not confirm you have Celiac, they just show it's a possibility.  There are more places that will do the genetic tests, your doctor can order them and your insurance might pay for them.

 

 If you have Celiac, you cannot EVER eat gluten.  I think you have been referred to the University of Chicago  website before, so you probably know all these answers.  

 

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casuallythere Explorer
14 minutes ago, kareng said:

Genetic tests do not confirm you have Celiac, they just show it's a possibility.  There are more places that will do the genetic tests, your doctor can order them and your insurance might pay for them.

 

 If you have Celiac, you cannot EVER eat gluten.  I think you have been referred to the University of Chicago  website before, so you probably know all these answers.  

 

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I do not know any of these answers, and i do not remember that website.

I don't know if you think this is a joking matter to me or not but my dad's pain was real, I went to have endocrinologist one time and this is how all this stated with a IgA level of 747. He literally freaked out like I was going to .... I am not trying to be a troll or rude. I really need answers. I am not looking for a diagnosis or medical treatment plan. I just would like to know if anyone has been in the situation or if they were what would they do.

Sounds to me I know this so far, correct me if I am wrong.

1. I do not have Celiac Disease right this moment.

2. The only way to truly find out is do an biopsy

3. I believe you either have it or you don't, maybe my symptoms are not as bad as my dads, but maybe I have a smaller version of it. I could try going gluten free and see if ibs goes down, no weird sensation sometimes right before I go to the bathroom on ocassion, etc, etc.

4. I can probably eliminate 95% of my gluten overnight. Maybe I can just see how I feel and see if it is much better.

5. I probably need to find a specialist that knows this very well, going to be hard.

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kareng Grand Master
7 minutes ago, casuallythere said:

I do not know any of these answers, and i do not remember that website.

I don't know if you think this is a joking matter to me or not but my dad's pain was real, I went to have endocrinologist one time and this is how all this stated with a IgA level of 747. He literally freaked out like I was going to .... I am not trying to be a troll or rude. I really need answers. I am not looking for a diagnosis or medical treatment plan. I just would like to know if anyone has been in the situation or if they were what would they do.

Sounds to me I know this so far, correct me if I am wrong.

1. I do not have Celiac Disease right this moment.

2. The only way to truly find out is do an biopsy

3. I believe you either have it or you don't, maybe my symptoms are not as bad as my dads, but maybe I have a smaller version of it. I could try going gluten free and see if ibs goes down, no weird sensation sometimes right before I go to the bathroom on ocassion, etc, etc.

4. I can probably eliminate 95% of my gluten overnight. Maybe I can just see how I feel and see if it is much better.

5. I probably need to find a specialist that knows this very well, going to be hard.

Well...now you have that website.  It is a great resource for info on Celiac disease

 

 

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kareng Grand Master

So here are some thoughts for you -

If you were on a "normal" gluten containing diet, and your Celiac antibody tests were negative or only slightly elevated, your GI might not want to continue to pursue a Celiac diagnosis.  But, if you are having gastrointestinal issues, he may want to do a colonoscopy and endoscopy to check for other problems.  While he is there, he will probably take samples to check for colitis & Celiac (but ask first to make sure & insist).  If those are negative, that might be the end of his treatment.

There are other reasons besides Celiac for GI symptoms. Lactose intolerance is one.  That's pretty common and I am sure you have heard of that.

Another reason is a FODMAPS issue - this is a common reason for non-Celiac gluten intolerance.  I will find you a link shortly.  It causes many of the same GI symptoms but the difference is that it does not cause an antibody reaction.   People with FODMAP issues follow a gluten-free diet because wheat is a high FODMAP food.  The difference between Celiac and FODMAP sensitivity is that a FODMAP sufferer can usually consume small amounts of wheat - so they can take a burger off a bun, have a bite of granny's famous cake, etc.  They have to find their balance.

 

Just because you might not have Celiac now, doesn't mean it might not manifest in the future.  I guess that is where the genetic test might help.

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