• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Biopsy Positive (?), Anemia, Confusion With Blood Tests Igg Igb Etc.
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,338
    • Total Posts
      935,553
  • Member Statistics

    • Total Members
      64,996
    • Most Online
      3,093

    Newest Member
    Gfjeschef
    Joined
  • Popular Now

  • Topics

  • Posts

    • If you want testing for celiac you will have to go back on gluten for 2 to 3 months for the blood test. There is a chance that your biopsy will be positive but if not then a challenge is in order. It would be a good idea to have your son tested also to keep him safe in school etc. He would need to do a challenge also if his ped agrees to test. It sounds like the wooden items your father made have great sentimental value. Perhaps you could clean them very well and then give them a sanding. That might make them safe for use.  
    • I've assumed for the last 8 years that I have gluten intolerance, or NCGS as I see it's now called. I thought that I had testing done (blood tests) that indicated I did not have celiac disease, and proceeded to follow a gluten free diet, most of the time. I've had gluten different times for different reasons, mostly because I started thinking "This can't be true. I should be able to eat my delicious home made bread!" and I suffered the consequences. Mostly pain in my neck and upper back, burning between the shoulder blades, also bloating and cravings for sugar and junk food. Each time, it took longer to recover from having gluten in my diet. The last time was over the holiday season last Christmas. Now I'm having pretty persistent symptoms, with the addition of occasional severe epigastric pain. So, off to the doctor I went to get this severe pain checked out. I found myself having an EGD a few days later, and when I woke up from my propofol induced stupor, there was the nice gastroenterologist telling me that he'd done biopsies to check for h. pylori AND CELIAC. I was floored. He didn't know I'd been gluten free. He did find mild gastritis and reflux, and no sign of hiatal hernia, which is what I really thought I had. I've looked through all my test results from the last 10 years, and can find nothing about testing for gliadin antibodies, or any of the tests mentioned here for gluten issues. I did have allergy testing done that was negative for wheat but I know that's not the same thing. I'm assuming that my biopsy will be normal, but that would be meaningless because I've been mostly gluten-free. The only times I've had gluten since January is maybe five times when I've had a couple of croutons on my salad at Olive Garden, or had an egg roll or wonton soup. If it's positive, then I know I've not been as vigilant about eliminating gluten as I should be, and I will have to stop using my wooden spoons (that my Daddy made) and my wood cutting boards (that my Daddy made) and throw away my favorite plastic spatula. My wooden cooking things were in use long ago, when I was still cooking wheat pasta, etc. So I know they are contaminated. My husband is telling me that there can't be enough gluten in those utensils to make a difference, but I've always worried about it a little bit. My Daddy can't make me any more things to replace the ones I have... I think right now that maybe the best thing for me would be to actually have a formal diagnosis, because that would make it easier for me to stick to the gluten free business. Right now it's too easy to let it slide, and to let people convince me that it's OK "just this one time". But - I'm wondering if there are any drawbacks that I am not aware of, and if anyone here knows please tell me what they are! If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? I really need to be sure because I have two children. One of them has anti thyroid antibodies (I have Hashimoto's thyroiditis) and that son also has alopecia areata and psoriasis. He is gluten free along with me.  
    • I found turmeric that had written on the packaging the "this item was farmed using the same machinery as wheat." Since I have not found a turmeric spice with this label or any other indicating it is gluten-free or not. I stay away ! I think people are differently with their sensitivity level ... but I will not even use a curry blend with turmeric in it, unfortunately.  
    • Don't beat yourself up about it.  The company may have changed suppliers or it may be put together in a different plant than previously. I hope they didn't CC you but if you have had some mystery glutenings at least you may have discovered the cause.
  • Upcoming Events