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Biopsy Positive (?), Anemia, Confusion With Blood Tests Igg Igb Etc.
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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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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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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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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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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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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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