Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help Me De-Code These Results
0

18 posts in this topic

So as i posted earlier, I have been gluten-free for 4 months and the doc ran the celiac blood tests without me first doing a gluten challenge. I dont understand the results, so someone help me de code them.

 

Tissue tansglutam ab IGA- >100

IGA- 202

endomysial antibody SCR (iga)- postive A

endomysial antibody titer- 1:160

 

No clue what any of it means. also it looks like IGA is just on there 3 times?

0

Share this post


Link to post
Share on other sites


Ads by Google:

IgA is a type of antibody, but just saying IgA doesn't say what "antigen" the antibody recognizes.

IgA 202 is your total IgA level. This is checked because some people with celiac don't make much IgA - if that had been the case and the other IgA tests were negative, one couldn't say yes or no to celiac and then would have to test IgG antibodies. But yours is in a normal range so the other tests are valid.

Tissue Transglutaminase IgA and endomysial antibody IgA are both tests for celiac disease. They are performed in quite different ways. Yours are both definitely positive. I don't know how much more detail you want - I am a scientist so might overdo the explanation if I don't stop now!

1

Share this post


Link to post
Share on other sites

Thanks for the details. If anyone could dumb that down into lay people language, it would be great! All I know is, the doctor called me to tell me that I probably have Celiac disease, but I have no clue how accurate she is presenting those details. Especially because I haven't eaten gluten in 4 months.

0

Share this post


Link to post
Share on other sites

The Tissue transglutam Ab IgA is the anti-tissue transglutaminase immunoglobulin A (tTG IgA) and indicates there is an attack going on in your endomysial linings of your intestines. Over 100 could be very high (like 200 or 500) or it could be 101. That does seem high to me for being gluten-free - I would suspect some cross-contamination with a number that high.

 

IgA is your total serum immunoglobulin A, which just shows how active the immune system that works in your mucosal linings are.  They test it because 5% of celiacs are deficient in IgA which would cause all IgA based tests (like the tTG IgA) to result in a false negative.

 

Your endomysial antibody titre (EMA IgA) is quite high at 1:160. I believe normally is usually 1:10 or lower. The titres are doubled each time they are run so it would go up like 1:20, 1:40, 1:80, 1:160. 1:160 is about the highest I ever see that test.  After being an untreated celiac for many decades, mine was 1:40.  The EMA IgA tends to come down faster than the tTG IgA.  You get EMA IgA testing positive when your body already has significant intestinal damage caused by tissue transglutaminase antibodies (tTG). Basically, your body senses gluten, and that the intestines are damaged, so it sends in the EMA to basically wipe out the top layer of your villi to get rid of the problem. The EMA IgA is rarely positive in early celiac disease.... or in those who eat gluten-free.

 

You definitely have celiac disease. The EMA IgA is 98-100% specific to celiac disease, meaning that 98-100% of the time, a positive test is caused by celiac disease. The tTG IgA is also highly specific to celiac disease and tends to only give (rare) false positives for those individuals with a weak positive test result... which is not you.  See this report (page 12) for more details: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

If those are your results after 4 months gluten-free, I would check your diet carefully for gluten.  I would guess that you are getting small amounts of gluten somewhere. Check soy sauce, worchestershire sauce, teriyaki and BBQ sauces, all seasonings, boullions, old baking supplies (like sugar that has had flour coated measuring cups dipped into it), medications, vitamins, lotions, soaps and shampoos (which could get into your mouth), snacks, and be extra careful eating out. You will need a new toaster, some new wooden spoons, and maybe a new collander or pans if they are damaged and could have gluten in the cracks.

 

Best wishes and welcome to the board.  :)

1

Share this post


Link to post
Share on other sites

My TTG IGA was very positive after a year. I was extremely gluten-free. My original was like yours - >100 . Who knows how over! It might have been fifty million trillion zillion. I put a link on your other thread from Celiac experts. The thing to do is to see how it goes down in 6-8 months of serious gluten-free.

And, since you were gluten-free for reasons other than Celiac, you may not have been as strict as a Celiac - took the burger off the bun, ate fries from a shared fryer, used soy sauce, ate cornflakes, etc.

0

Share this post


Link to post
Share on other sites




That's crazy. I already have ocd and now im feeling like im going to go insane over this!

0

Share this post


Link to post
Share on other sites

I am so glad for you that you made this discovery even after being gluten free for 4 months!

 

Dee

0

Share this post


Link to post
Share on other sites

That's crazy. I already have ocd and now im feeling like im going to go insane over this!

The first few months going 100% gluten-free are a bit stressful but once you get in your groove, it gets much easier.

0

Share this post


Link to post
Share on other sites

Most of my cookware is expensive calphalon cookware, fairly new! Is there anyway to clean it so that I can rid it on these freaking gluten particles I cannot even see?! So nerve wracking!

0

Share this post


Link to post
Share on other sites

Most of my cookware is expensive calphalon cookware, fairly new! Is there anyway to clean it so that I can rid it on these freaking gluten particles I cannot even see?! So nerve wracking!

Just wash it good. No big deal.

0

Share this post


Link to post
Share on other sites

That's all? And i shouldnt be using the wooden spoons i used for pasta? and the non stick i used to use for pancakes? trash them?

0

Share this post


Link to post
Share on other sites

Use some common sense - can you wash it well? Get into the little cracks and clean them out? Kind of hard to do with wooden spoons and colanders - but good pans should be cleanable.

0

Share this post


Link to post
Share on other sites

check out the newbie 101 thread in the coping section of the forum.  lots of great advice and some tricks of the trade :)  welcome to the best club you never wanted to join  -_-

0

Share this post


Link to post
Share on other sites

I'm relatively new to living gluten-free but it is already part of the routine now. I've found there are a lot more foods I can have than I first thought, just learn to read labels well and go to the store and spend a few hours walking around reading labels. You'll find it isn't as hard as you first thought.

0

Share this post


Link to post
Share on other sites

I strongly suggest you get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

Tons of great advice and excellent information in there by over 50 leading celiac experts and celiac nutritionists. 

 

Read this thread:

 

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

What doctor just called and said "you may have celiac" like that and did not schedule a follow up or a visit with a nutritionist or other testing?

That's not very helpful at all. It's also not very definitive. 

Sounds like you need a good GI doctor to me. 

 

Do not stress out over this, okay. That does not help you heal at all. Stress creates inflammation, insomnia, all sorts of muscle pain.

Relax. breathe and know this: we all learned to adapt and so will you. In time, you may even find your "OCD" is gone.

Best wishes. 

0

Share this post


Link to post
Share on other sites

Thanks Irish, it was s nurse practitioner, she's only there twice a week I found out, so it took me over a week to get results with the holiday. I saw a gastro yesterday, he has doubts about celiac, but claims I need an endo, which happens to be at a surgical center that he owns. :/ and said I don't need to do a gluten challenge. I'm eye rolling so hard right now. Because In my little amount of research, I know he's wrong.

0

Share this post


Link to post
Share on other sites

Thanks Irish, it was s nurse practitioner, she's only there twice a week I found out, so it took me over a week to get results with the holiday. I saw a gastro yesterday, he has doubts about celiac, but claims I need an endo, which happens to be at a surgical center that he owns. :/ and said I don't need to do a gluten challenge. I'm eye rolling so hard right now. Because In my little amount of research, I know he's wrong.

 

I do not think he is wrong at all. I think he wants to make sure you have been diagnosed properly and maybe also eliminate other conditions.

You may well still have evidence of villous blunting if your antibodies are still high. 

 

If your test results indicate celiac, why does he 'doubt" it? i do not understand. 

 

Despite some of our misadventures with the medical community, I have found that not all doctors are asshats . ^_^ My new GI/celiac doc is awesome and he uses the surgical center at his practice and he takes good care of me.  

 

it's your call of course, but I'd want to make sure i had the right DX and that nothing else was a problem. 

0

Share this post


Link to post
Share on other sites

Im sorry, I meant he has NO doubts about the celiac.My symptoms are getting lesser as time goes on, i think i had a huge boost of healing at around 2 weeks gluten-free but its been slow going ever since because i have been eating gluten-free junk! I think i need to be really strict and just eat whole foods for now.

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
      103,337
    • Total Posts
      917,378
  • Topics

  • Posts

    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined