• 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.

Impatient
0

13 posts in this topic

Hi,

I am new here. A month ago my blood test came back positive for gluten anti-bodies. I have an endoscopy next week, but am wondering if anyone knows what percentage of people who have the endoscopy actually test positive for celiac?? I really want to start going gluten free, to see if I feel better but I know I can't until after the endo. I'm also having doubts about the endoscopy and will be disappointed for putting myself through that if I end up not having celiac. Any thoughts or statistics?

Thanks!

0

Share this post


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


Hi,

I am new here. A month ago my blood test came back positive for gluten anti-bodies. I have an endoscopy next week, but am wondering if anyone knows what percentage of people who have the endoscopy actually test positive for celiac?? I really want to start going gluten free, to see if I feel better but I know I can't until after the endo. I'm also having doubts about the endoscopy and will be disappointed for putting myself through that if I end up not having celiac. Any thoughts or statistics?

Thanks!

Hi Amber and welcome! Could you post your blood test results here. We have some great peeps who can interpret them for you.

I did everything backwards. I was really sick and my GP sent me to a GI who confirmed my diagnosis as Celiac via Biopsy. I had a blood test several months after being gluten free, which was negative.

If possitive, that alone can be diagnostic. An Endo Exam can confirm the diagnosis, but it can also check for the level of damage due to Celiac, or look for other associated issues, with digestive distress. Ask the GI to take 8-10 samples, as the intestines are long and affectived areas may be missed. If you biopsy is negative, it could be that you were tested prior to significant damage could be identified. A negative test does not necessarily mean that you do not have Celiac. As well, Non Celiac Gluten Sensitivity can be RX's by a gluten free diet.

You're only a week away...take this time to get organized, and read here as much as you are able. As soon as you get tested, you can begin the diet. A positive dietary result is also a piece of the diagnostic puzzle.

What are your symtoms?

0

Share this post


Link to post
Share on other sites

You should never feel bad for putting your health as priority. As Lisa said please post up your test results, some are highly unreliable where as others are going to be much more specific in your clinical setting. Also a list of symptoms and what led you to believe celiac, any other medical conditions?

0

Share this post


Link to post
Share on other sites

This site has more info on blood tests, etc so you might want to check it out

http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-a-positive-blood-test-but-not-have-celiac-disease

Is it possible to have a positive blood test, but not have celiac disease?

Yes, blood work can be falsely positive, as can any test in medicine, especially at low titers. However, it may be that the biopsy was done or read incorrectly or that there’s not yet enough damage in the small intestine to diagnose celiac disease. A second opinion at a celiac center can help clarify a diagnosis.

False positives vary between the tests and also between the populations considered. For instance, tTG is falsely positive in about 2-3% of people in general, but in about 20% of those with Type 1 Diabetes or other autoimmune conditions. EMA, on the other hand, has basically no false positives.

You could consider a genetic and EMA test to assist with your diagnosis. In certain cases these can provide a strong enough indication to diagnose the disease when in conjunction with a positive response to a gluten-free diet.

0

Share this post


Link to post
Share on other sites
Ads by Google:


My pcp didn't tell me anything except that I tested positive for the antibodies. I'll have to call them. I've had stomach problems for years, was diagnosed with ibs and have been lactose intolerant since birth. The ibs meds never worked so i stopped taking them. My mom was diagnosed with celiac 3 years ago so when I had my physical this year i asked my doc to check for celiac when he did my blood work just to see. And here I am now ;)

0

Share this post


Link to post
Share on other sites

Ok i have my results:

Endomysial Antibody IGA - Positive Abnormal

(tTG) IgA - 10

Immunoglobulin A, Qn, Serum - 74 low

(tTg) IgG - <2

And now i have to postpone my endo because of my asthma, can't get another appointment until late December.

Edited by AmberRS
0

Share this post


Link to post
Share on other sites




out of what?

mine was 1-19 was normal, anything above was positive. I scored a 37 I believe and got a positive for both genes, yet a negative on the endoscopy and the rest of the blood tests outside of the IGA ttg.

0

Share this post


Link to post
Share on other sites

Oh I didn't realize it could be different... Here is exactly what mine says:

Test Result - Flag Units Reference Interval

Celiac Disease Panel

Endomysial Antibody (IgA) - Positive - Abnormal

t-Transglutaminase (tTG) IgA - 10 - High

Units - Reference Interval

U/mL 0-3

Negative 0-3

Weak Positive 4-10

Positive >10

Immunoglobulin A, Qn, Serum - 74 - Low

t-Transglutaminase (tTG) IgC - <2

Units - Reference Interval

mg/dl 91-414

U/mL 0-5

Negative 0-5

Weak Positive 6-9

Positive >9

Edited by AmberRS
0

Share this post


Link to post
Share on other sites

My serum came out in the high normal.

Get the genetic test done, as it can't hurt at this point. Of course, feel free to go gluten free regardless of the results.

0

Share this post


Link to post
Share on other sites




Hi Amber-

With low Total IgA it is tough to have a positive/abnormal tTG-IgA -- this information together equals a strong positive for Celiac Disease.

The positive/abnormal EMA means there is measurable damage to the endomysial layer of the small intestine.

You have Celiac Disease. I'm not clear which IgG based tests were run, so check that you have had the following tTG-IgG, DGP-IgA and DGP-IgG.

Nutrient testing is important as well - most of us need supplementation of one or more vitamins/minerals until the damage in the small intestine is healed.

An endoscopy is useful to confirm diagnosis and measure the amount of damage to your small intestine. It also takes a look at other parts of your digestive track, so IMO it is very good to have this done. If you and your doctor decide to proceed it is advised to keep gluten in your diet. This will be for you to decide since you have already tested positive. If you decide to keep gluten in - there is no need to overdo it - a slice or two of gluten containing bread per day is sufficient.

Good luck to you :)

0

Share this post


Link to post
Share on other sites

I don't know why you are doubting the diagnosis, if your mother has it and the blood showed positive then take it and run. You are one of the lucky ones that actually has a doctor that appears to be willing to give you to accurate diagnosis. The blood test has a 95%-99% sensitivity and specificity.

I wish I could only be so lucky and finally get an answer to my problem.

I wrote somewhere else about my years of stomach problems, anemia, blunted villi (in distal duodenum and proximal jejunum) right where celiac hits. But I am seronegative and my biopsy was negative.

I am in ARNP school and have realized how many people are not textbook presentation you appear to be which I assure you will make life much easier for you!

Honestly you don't HAVE to get the biopsy you have the diagnosis but its quick, painless and nice to know how much damage is done some after a few years you can do it again and compare the two

0

Share this post


Link to post
Share on other sites

Well my endo came back negative for Celiac. I'm gonna go gluten free anyway and see if I feel better.

0

Share this post


Link to post
Share on other sites

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
      107,320
    • Total Posts
      935,469
  • Member Statistics

    • Total Members
      64,981
    • Most Online
      3,093

    Newest Member
    Walter Scott
    Joined
  • Popular Now

  • Topics

  • Posts

    • No anti-sm(lupus)? Yes, anti dsDNA is for SLE(lupus). No ENA panel,anti-RNP, anti-SS-A, anti-SS-B, anti histone, scl-70, etc? I'd ask for a referral, if you feel that there is something going on. I think that would be a logical step because of the positive ANA and lack of investigation. 1:640 is definitely positive. 
    • My MCH is always high too. Have some other oddities but doc always say labs are great as well. I dont think they ever really bother with the MCH. I'm also in testing and showed negative on the same ones you did. My IGA is fine though. As far as the other tests, maybe your girls GI can order or you could try your primary. 
    • Hi there!   I follow a low histamine diet that Cycling Lady brought to my attention a long time ago.  Citrus fruits and their juices are histamine releasing foods.  High histamine levels can cause hives just like in an allergic reaction.  Here's a helpful site:   https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/ I don't drink orange juice because because of the hives and stomach upset I get from it, and also because I'm type two diabetic and my system can't handle all the sugars in it.  High glucose contributes to inflammation. I also avoid things with added flavors and scents because they often contain sulfur components like sulfites or sulfates.  Corn products are often processed with sulfuric acid.  Some Celiacs, like me, develop a sulfite sensitivity.  Here's a helpful site:  http://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/ Garlic and onions are high in sulfites.  People who can't tolerate foods high in sulfites are often deficient in a trace mineral, molybdenum.  Molybdenum is also involved in blood production.  Here's another site:  http://www.whfoods.com/genpage.php?tname=nutrient&dbid=128 So, there's not always a simple answer.  I'm leary of processed foods because you don't really know how they're processed and what really goes into them.  I'd rather stick to fresh foods.  Hope this helps.
    • No, no, no!  Don't cut yourself off from your friends and social life because you feel you can't eat what everyone else is eating!  I can't think of a single bar or restaurant I've been to where I haven't found something to eat.  It may not always be what I would like to order/eat, but I'm not sitting without food while everyone else is eating!  If I'm going to a private party or someone's home where I'm concerned about food selection, I bring my own, tell the hostess and without making a big deal of it, eat what I brought.  Other times I eat a bit before I go, snack on the veggies or other obviously safe food,  and eat when I get home. If I go shopping for the day or somewhere that it's difficult to pick up a quick gluten-free snack, I put a piece of fruit or a gluten-free granola bar in my purse in case I get hungry.   It's only a big deal if you make it one.  I have been gluten-free for 7 years.  My attitude about food is now this:  eating out is strictly a social event. I always find something to order though at times it seems the gluten-free selections are kind of bland, but I won't go hungry.  If I want a good, tasty meal, I make it for myself at home.  There is nothing that I can't duplicate in my kitchen in a gluten-free version.   It's only been a couple of months for you so I'm hoping you will gradually see that this becomes such a way of life that you won't even give it a second thought.  Your meal prep will take less time as you grow accustomed to this--any new diet takes time to learn.  Good luck and hang in there!
  • Upcoming Events