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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can Someone Explaim My Test Results?
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19 posts in this topic

My test results from Kaiser Permanente finally posted to my account. Specific numbers aren't provided for 2 out of 3 tests. They just say "negative." My question is -- what is IGA and why would my result be so far outside the standard range? 

 

Name

Standard range

My result on 7/7/14  

 

GLIADIN IGA

NEG UNITS

NEGATIVE...  

 

IGA

70-400 MG/DL

39  

 

TISSUE TRANSGLUTAMINASE IGA

NEG UNITS

NEGATIVE...
 

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My test results from Kaiser Permanente finally posted to my account. Specific numbers aren't provided for 2 out of 3 tests. They just say "negative." My question is -- what is IGA and why would my result be so far outside the standard range? 

 

Name

Standard range

My result on 7/7/14  

 

GLIADIN IGA

NEG UNITS

NEGATIVE...  

 

IGA

70-400 MG/DL

39  

 

TISSUE TRANSGLUTAMINASE IGA

NEG UNITS

NEGATIVE...

 

 

A low IgA is one test used to check for immune deficiency. The problem with a low IgA is that it can nullify your tissue IgA test.  I have to look back to remember everything else that is going on but you may want to have a full immune deficiency panel run, IgA, IgG (and it's subclasses), IgM, etc.  Low IgG subclass 3 can cause the bowel issues seen with celiac disease as well.  The other subclasses relate to infections, usually upper respiratory.  I'm not sure who you are seeing, but you might want to get with a specialist and get a complete workup.

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Thanks for the responses. I was just curious what it meant. I'm glad that shouldn't invalidate my tests. Though based on what I read, it seems my lower than normal IgA levels could explain why i tend to easily get sick.

 

Regardless, I don't want more blood work. I've had more blood work in the past year for my iron levels than all the rest of my life combined. I have no desire to request more. 

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Sick how? Is it just bathroom issues or other illnesses?

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You are IgA deficient so that does invalidate the IgA based tests.  You need to have IgG based tests run.  They can't rule you out as a celiac based on the IgA tests.

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You are IgA deficient so that does invalidate the IgA based tests.  You need to have IgG based tests run.  They can't rule you out as a celiac based on the IgA tests.

You might want to check out my link. A bit below the normal seems to be fine for Celiac tests.

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You might want to check out my link. A bit below the normal seems to be fine for Celiac tests.

 

It's all in the numbers.  If you have a 20 on your IgA tissue test but your IgA total is 5, your 20 tissue test might come back in the normal range.  Low IgA in itself can cause a lot of issues, but there is really not much you can do for low IgA other than ingest extra protein to help bump that number.  The OP could very well not be celiac disease, but should still have the immune tests run because many of the symptoms are the same, and if he has had numerous sinus infections, bronchitis, pneumonia, etc. his IgG subclasses may be low too.  If they are too low, then gamma globulin therapy might be indicated.

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It's all in the numbers.  If you have a 20 on your IgA tissue test but your IgA total is 5, your 20 tissue test might come back in the normal range.  Low IgA in itself can cause a lot of issues, but there is really not much you can do for low IgA other than ingest extra protein to help bump that number.  The OP could very well not be celiac disease, but should still have the immune tests run because many of the symptoms are the same, and if he has had numerous sinus infections, bronchitis, pneumonia, etc. his IgG subclasses may be low too.  If they are too low, then gamma globulin therapy might be indicated.

I was just linking to Celiac experts about low IGA and Celiac tests. It was not meant as a comment on any other health issues.

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It is actually all in the numbers and the testing that each person has done.  You can go to ten different labs and get ten different tests results for the same tests.  It is all on the instrumentation and methodologies that laboratories are using.  Each lab has to come up with their own "normal" by testing known patient values from old instrumentation or methodology against the new ones.  We all know from experience that the "normal" reference ranges vary.  From what I have seen on here, the tTg IgA normal vary from <4 being considered negative to the highest I have seen as <20 being normal.  So patient A could go to one institution and have antibody levels of 10 but the normal value for their methodology is <20 so doctor at that institution are going to tell them they are negative for celiac.  Patient B could go to the next town's lab and get tested and have an antibody level of 10 but their lab's reference ranges are <4 being normal so their doctor is going to say they have probable celiac, off to GI they go and get the EGD.  We also know from others' experiences that some people test negative on their antibody levels but still have symptoms of celiac so they go to get the EGD and find out they have celiac that way. A lot of the institutions in my area only test the tTg Iga antibodies and nothing else, so if the patient has a result of <4 they tell them they are negative for celiac and don't do further testing.  I have two different hospitals in my town and they both use Mayo as a reference lab for these tests meaning that they don't do them in house they send them to Mayo to be tested.  People with celiac don't always show up positive on the same tests either.  Some are negative on their IgA based tests and are positive on the IgG tests even with a normal Total IgA, some are negative on the tTg testing but come back positive on the EMAs and so on. It really is spotty.  If they just did the whole panel to begin with a lot more people would get diagnosed sooner, but sadly they do not.

 

We also know that everyone has come about their diagnosis differently and everyone has varying symptoms.  Some only have low iron or hgb with little or no digestive symptoms, some have none at all and some have the whole kit and caboodle.  Everything varies.

 

The University of Chicago Celiac disease center might have different instrumentation than Mayo.  It doesn't state in the link if all IgA levels >20 will validate IgA testing in all institutions or on all instrumentation or methodologies.  I have worked in two different labs and been to countless others for training or my clinicals, there are a wide variety of instruments and methodologies that vary from lab to lab. The threshold for the lower and upper limit of each tests varies greatly also.  Some labs can test some components accurately down to zero while some labs won't be able to based on the instrumentation.

 

What I am going to say next is my opinion - I would want the full panel to rule it all out.  If I was a male in what looks like excellent physical health by the picture and had an unexplainable low Iron ( unless you have uncontrolled bleeding that you haven't shared or are a woman) I would want to figure out why.  Especially if a disease like celiac is suspected where if not properly diagnosed can cause serious health related issues the longer it goes undiagnosed.

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Getting back to the original question and cutting to the chase here:

 

the  Total serum IgA: This test is used to check for IgA deficiency, a harmless condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result.  

 

 

get this one run:

 

  • Deaminated gliadin peptide test (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.

and if that, too is negative, it is extremely unlikely that you have celiac. 

 

from the U of Chicago celiac disease center that Karen linked to:

 

IgA deficiency doesn’t lead to any clinical issues. If you are attempting to get an accurate diagnosis for celiac disease and you know you’re IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an EMA blood test should also be taken….

 

 

 

***I edited my post after re-reading the OP's first post.

Edited by IrishHeart
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OK, so there's a lot here to digest (no pun intended). 

 

When I said I have a tendency to get sick, I meant illnesses like the common cold. When I was younger, during grade school and college, I had frequent sinus infections. Younger than that, I had frequent ear infections.

 

When I first sought medical treatment last summer for fatigue, I did not have any digestive problems. That's when the anemia was found. At that time, my hemoglobin was 10.4 and my hematocrit was 34%. Those are low values for a male, especially considering blood work from 6 years prior had my hemoglobin at 16.7 and my hematocrit at 49%. Obviously, something changed. My iron levels were subsequently found to be very low.

 

I've been taking an iron supplement for most of the past year. From July to February, I was taking 130mg of elemental iron per day. During that time, my hemoglobin and hematocrit rebounded to normal levels. I then stopped taking the iron supplement for 30-45 days. Following increasing lethargy, I restarted it in mid-to-late April. I did not have blood work again until this month. My hemaglobin, hematocrit, and iron are now uniformly down from their February highs, but still normal. This caused my doctor to conclude that a daily iron supplement of 65mg was needed to maintain my current levels.

 

My current iron supplement is 6x the recommended daily iron intake for an adult male. That is in addition to iron consumed in my diet, which is low in red meat, but not vegetarian.

 

I do occasionally have digestive discomfort now, but I think it could be attributable to the iron supplement. On Mother's Day, I got what seemed liked an intestinal virus. with intermittent diarrhea and a 100.3 fever on successive nights. The diarrhea continued well after the fever subsided, but had mostly stopped after 2 weeks.

 

I am in good shape. I can run long distances at a relatively fast pace. It's not world class, but I can post good times. I also lift weights. 

 

So there seems to be some question to how my IgA might influence the other celiac tests. They are listed above, but I have no experience with them and only know what I read today. I was not given the exact numbers for those tests, just a "negative" value. My doctor didn't seem very concerned, but did counsel that I continue a minimal or gluten free diet to see how I progress. 

 

I know it's unusual for a male to become anemic or need an iron supplement. I don't donate blood. I never have tarry colored stools or any visible blood in my stools. I was tested last summer for occult blood loss and that was negative. There is no evidence to suggest bone marrow dysfunction or blood cancer. There is even no evidence to suggest malabsorption, as all other values (calcium, potassium, sodium, folate, and b12) were normal and I seem to readily absorb the oral iron supplement.

 

I don't know. I'm willing to just wait and see what happens. I don't want to seem like a hypocondriac, though my doctor told me to have a short threshold for alerting him if something is wrong. 

 

Last week I did have an odd episode where I had chest pain for a minute or two, but I think it was just indigestion. What concerned me about it at the time was there was a pressure feeling accompanied my shortness of breath, lightheadedness, and discomfort that radiated to my left jaw.  I KNOW what that sounds like and I panicked for a minute. But then I burped a few times and figured it was nothing. I did have an EKG, enzyme tests, and an electrocardiogram last year, all which found nothing wrong with my heart. That was done last summer after it was determined I was anemic, but before it was found I was iron deficient. It followed an episode where I ended up in the ER because I passed out, slammed my head into some furniture, and bled substantially from my nose. 

 

Yeah, that was a mess. I don't want to tell my doctor about that recent episode though because I really don't think there's anything wrong with my heart, despite it sometimes feeling like there's soreness there after I exercise. 

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Hi Cookies,

(I am eating annies gluten-free bunnie cookies as I type this by the way)

 

Your IgA being low by itself isn't too big of a deal, but I highly recommend asking to be screened for any further immunodeficiencies.  Your regular doctor can test your other Ig levels.  I just picked up on your ability to catch everything, and although it is rare, sometimes there can be an underlying cause.  The other posters seem to have answered your original question well so I don't have too much to add there, except don't give up and push for good screening.  Better to be safe than sorry, especially when you have a gut feeling something is wrong.

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My doctor didn't seem very concerned, but did counsel that I continue a minimal or gluten free diet to see how I progress. 

 

But why would he suggest that if the tests are negative and he has not done a biopsy yet? Were you eating gluten free at the time of testing?

 

If you were gluten-free at the time of testing, the test results are invalid anyway.

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I don't know what to tell you. 

 

I will tell you up front I don't have a lot of faith in doctors right now.  I have been going to them for 37 years trying to find out what was wrong with me.  But then again the more I read and research, the more I find out about just how hard this disease is to diagnose with all the variables it presents.

 

With symptoms you never know either, there are over three hundred.  Is someone with celiac who had chronic ear infections going to consider that a symptom in someone else?  Probably.  Same with every thing else.  I have had every "symptom" you have stated but the low iron.

 

Really if you don't want to do more tests, just change the diet.  Go gluten-free for six months and see how you feel, have your iron levels rechecked.

 

With all the testing you listed there isn't any mention of thyroid testing, did they do any?  It really has nothing to do with your iron levels, but sometimes over or underactive thyroids can cause some really weird chest problems.

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Why would he suggest I continue a gluten free diet? Probably just to see how I feel. I intimated that I thought maybe it helped improve my exercise tolerance. Also, there remains no verifiable cause for my tendency towards iron deficiency.

 

Was I eating gluten free prior to the test? On most days, yes. For training purposes, I don't consume large amounts of bread, cereal, baked goods or fried foods.

 

Did I have thyroid testing? Yes, those results were normal. A battery of blood tests were run when it was discovered I was anemic. That first appointment after those initial tests was very traumatic. The concern in my doctor's demeanor was apparent from the moment he stepped into the room. He laid out the possibilities and they were almost universally bad. It was not like a normal doctor's appointment. He was preparing me for the possibility of very bad news. When I saw he was referring me to oncology and then mentioned I was at the age they worry about lymphoma, I almost lost it. Once I got back to my car, I did lose it. I broke down in tears. It's a wonder I was able to drive myself home. I was a complete mess.

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Again, the immune issues can mimic the symptoms for Celiac and can explain most of your other symptoms as well.  It's a couple more vials of blood, nothing too horrible.  I would suggest you see an infectious disease doctor or a doctor that specializes in immune deficiency and just see.  My daughter has this, and is probably Celiac as well--still getting tests done on her.  With a low IgA to start, I'm a little surprised your dr didn't do the full panel to start with.  It gets old getting poked and prodded but, it is something you want to know because there are treatments to help if your numbers are low enough.

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Why would he suggest I continue a gluten free diet? Probably just to see how I feel. I intimated that I thought maybe it helped improve my exercise tolerance. Also, there remains no verifiable cause for my tendency towards iron deficiency.

 

Was I eating gluten free prior to the test? On most days, yes. For training purposes, I don't consume large amounts of bread, cereal, baked goods or fried foods.

 

Did I have thyroid testing? Yes, those results were normal. A battery of blood tests were run when it was discovered I was anemic. That first appointment after those initial tests was very traumatic. The concern in my doctor's demeanor was apparent from the moment he stepped into the room. He laid out the possibilities and they were almost universally bad. It was not like a normal doctor's appointment. He was preparing me for the possibility of very bad news. When I saw he was referring me to oncology and then mentioned I was at the age they worry about lymphoma, I almost lost it. Once I got back to my car, I did lose it. I broke down in tears. It's a wonder I was able to drive myself home. I was a complete mess.

 

 

Honestly. the doctor should not have made you feel like it was "worst case scenario" without all the facts. You haven't even had a consult with the hematologist yet! I will tell you this: my Dad had severe iron deficiency anemia and tanked hematocrits requiring blood transfusions. The hematologist/oncologist was the one who made him feel better. Unfortunately, he had to do this for many years and they never could figure out why,

despite testing of all kinds. Except the one that was glaringly missing when i went back to look at everything that was done. They never biopsied him

for celiac. I was not diagnosed back then yet, so of course, I had no clue what was going on with him--or me--for that matter.

 

 

Normally, men do not have blood loss or anemia, but sometimes it occurs. There are people of Meditteranean descent for example, who seem to have a higher ratio of anemia. 

 

But speculating that it may be lymphoma makes no sense to me when that would mean a low white blood cell count.

 

Iron deficiency anemia is determined by the hemoglobin in red blood cells.

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Your doctor seems a bit misinformed and is somewhat of an alarmist. :blink:

 

About 5% of all celiacs are deficient in Immunoglobulin A (IgA) which is higher than the regular population.  If you do not make normal IgA, your body will not be able to make enough (celiac) auto-antibodies (tTG IgA, AGA IgA, DGP IgA, EMA IgA) to register in the blood tests. I have only seen one celiac who was deficient in IgA who (barely) had a positive IgA based celiac test (it was the tTG IgA I believe) - normally those who have low IgA will be negative even if they are a celiac.

 

To find out if you are aceliac you need these tests (as others have said):

tTG IgG

EMA IgG

DGP IgG

AGA IgG (older and less reliable test)

 

These tests need you to be eating 1-2 slices of bread per day (or equivalent) in the 8-12 weeks prior to testing.  Almost all celiacs who eat gluten-free will have negative celiac tests once their immune system calms down.

 

The endoscopic biopsy requires only 2-4 weeks of gluten prior to testing.

 

If you are not going to test, try the gluten-free diet, 100%. No soy sauce, beer, teriyaki, or pre packaged soups.  Give it about 6 months before you judge the results. Maybe you'll feel better.

 

Good luck.

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