• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
0
RedFlame

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

Rate this topic

Recommended Posts

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

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.

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.

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?)

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!

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
      108,963
    • Total Posts
      943,688
  • Member Statistics

    • Total Members
      67,274
    • Most Online
      3,093

    Newest Member
    Vicheth
    Joined
  • Popular Now

  • Topics

  • Posts

    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
    • BoliviaB, DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten. However I want to go/see that the parasite route has also been exhausted. The fever's (for most Celiac's anyway) are not typically but low grade inflammation is. I had annual bronchitis issues and ear aches that went away after stopping gluten. You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug. A blood test will confirm that the Chagas parasite's were killed with your AB's round. Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control. I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications. If you are having your blood drawn again it should be (re)checked. In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood. Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems. https://www.cdc.gov/parasites/chagas/disease.html quoting "a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas. if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it. I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago. http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html  If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite. The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population. quoting again "In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite). This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia. The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two. **** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten. I hope this is helpful. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God, ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.  https://www.cdc.gov/parasites/chagas/gen_info/screening.html Again I hope this helpful.    
    • Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.  Rye Barley Spelt Wheat Oats  Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs   Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.  After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.    P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 
    • I am 33 and just diagnosed with celiac in July 2017. I am gluten free but still suffering from costocondritis and stomach acid issues. I am also dealing with some neurological things like pins and needles in my left shoulder blade that come and go. No deficiancies right now that we know of othwr than vitamin D which I have a prescription for. My symptoms were not bothersome until right after my first child and then everything fell apart. 
    • That is good news!  No celiac disease!   I would follow your doctor’s advice.  Consider adding in more veggies and fruit into your diet.  You can trial a gluten-free diet now that testing is over.  That might help.   Did they rule anything else out?  I would encourage you to obtain all your lab results and medical records.  It is a very good thing to maintain!  
  • Upcoming Events