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Biopsy Positive (?), Anemia, Confusion With Blood Tests Igg Igb Etc.


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#1 RedFlame

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Posted 17 February 2013 - 10:31 AM

Hi everyone, I've been reading and following this forum for a while now and would really appreciate help with my current predicament.

I had an upper and lower endoscopy a year ago for Gastroparesis. I recently found out that the biopsy of small intestine showed inflammation and positive sign for possible Celiac. I have no idea what that means, if it's just inflammation or the villi.

I have had all the symptoms of celiac disease for about 15 years but the last year and a half have become severe. I have lost 147 pounds in 18 months which they think is from Gastroparesis although that testing was inconclusive. I can only eat a few foods right now and have absolutely no appetite. I am also anemic and have low B12.

Inflammatory markers in serum are positive and also have a positive ANA with homogenous titer pattern.

Was diagnosed with Primary Sjogrens last week and he also suspects Celiac and maybe Lupus. But my blood tests are confusing me. (haven't seen the doc again yet)

Both my TTG IGg A and IGg Ab show my level at >10 with the 'standard range' listed as >20. Does this mean that my levels are low and that I don't have Celiac?

My Beta globulins are also low.

I sure hope I don't as bread and crackers are among the things I can still eat!

My mother was told she was allergic to wheat when she was in her late 40's. I don't know if she actually had testing or if she and her doctor just figured that out using an elimination diet without testing. Don't know if she had celiac disease.

What do my blood tests mean?

Thanks, Lois
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#2 mushroom

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Posted 17 February 2013 - 11:06 AM

Well, I do have to admit that that is a very confusing way to report a test result. It means that your antibodies are greater than 10, but does not tell you by how much. To be positive they would have to be greater than 20. Whether that score represents somewhere between 10 and 20 is not at all clear. They should be able to quantify an exact number for you. They also did only one test (well, two if you count the IgA and IgG versions) when a full celiac screening panel consists of the following:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Bearing in mind the following: The first two tests are the older tests and have been largely replaced by the DGP; and the EMA is usually only run when the tTG is positive, they have not run the newer test, the DGP which is very specific for celiac disease and shows up at an earlier stage than the tTG, and the Total Serum IgA shows whether or not you produce normal quantities of antibodies. But all that aside, you do not have to test positive on all tests. Only one positive is required, and for someone with such longstanding symptoms as yours, with signs of GI damage (??celiac) a year ago, with such a drastic weight loss which is one of the biggie symptoms of celiac (although could be caused by gastroparesis), the anemia and low B12, another autoimmune disease (Sjogrens) and suspicion of lupus, family history of wheat allergy, I would think they absolutely run a total panel on you, along with another EGD with biopsy.

So what does it all mean? At this point, nothing useful. You need to talk to your doctor about it, obviously, but at this point I would think the whole panel is called for rather than just a screening tTG which is the way the doctors usually like to go. But they don't have to live in your body and can afford to say, well, we'll just save some money and run this one test. It is possible for this test to be entirely negative and for you to have celiac disease. It is possible also for this test to be positive and for you to not have the disease, so just running this one test does not tell you a lot of anything.

If you doc is willing to cut to the chase and do another EGD, and take at least six biopsy samples, then do that by all means; it is certainly justified with your dramatic symptoms in the last 18 months. Let us know what your are told after your visit. Welcome to the board and keep in touch and let us know how your testing progresses.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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#3 RedFlame

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Posted 17 February 2013 - 11:27 AM

Thank you so much for your response and help!

Those two tests are so confusing. The 'standard range' part is confusing, does that mean that normal is above 20 or that to be positve it has to be above 20. Very ambiguous to me. Usually a test will have either a 'reference range' or 'standard range'. This particular University has old testing procedures for some reason.

I just checked and he didn't run the DGP or EMA. I will ask when I see him next month.

I wish the biopsy was more specific too, don't understand why something positive isn't enough for a diagnosis. Can't tell you how often I have tested positive for something but then told only to be told it wasn't significant enough.

I just hate waiting.
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#4 mushroom

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Posted 17 February 2013 - 11:44 AM

Normally there are three parts to the range: for example, >5 would be negative; 6-9 would be equivocal or mildly positive; <10 would be positive. They usually put in this equivocal range because how can you say that 10 is that much greater than 9 :rolleyes: ?? or 6 that much greater than 5. I guess you could call it a cover your butt range :) But I have never seen scores expressed like yours.

Do you have a copy of the pathology report that you could reproduce here? (The one for the EGD?)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 RedFlame

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Posted 17 February 2013 - 12:08 PM

Normally there are three parts to the range: for example, >5 would be negative; 6-9 would be equivocal or mildly positive; <10 would be positive. They usually put in this equivocal range because how can you say that 10 is that much greater than 9 :rolleyes: ?? or 6 that much greater than 5. I guess you could call it a cover your butt range :) But I have never seen scores expressed like yours.

Do you have a copy of the pathology report that you could reproduce here? (The one for the EGD?)


Yeah, this particular medical system has a long history of old methodology in testing and treatment even though it's a teaching hospital. Go figure.

I don't have the pathology report but that's what I am going to do tomorrow. I will post it as soon as I have it. My suspicion is that they only took one biopsy. Thanks again!
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