• 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? - 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
0
Kristina812

Intro And Question

Rate this topic

Recommended Posts

Hi,   My name is Kris and we are very likely in the process of getting my 8yo DD diagnosed with celiac. Our Dr. sent her to an endocrinologist to investigate her short stature , (<1%) .  He ran blood work on her tissue transglutaminase iga was 1,992, a GI appointment in June and trying to learn as much as we can in the meantime.  

In the meantime I had a routine apt. with my gynecologist, and I asked him to run a tissue transglutaminase iga on me, since celiac tends to be genetic. (Although I don’t have any symptoms that I am aware of)  My # came out at 78 although my gynecologist does not really know what means.  I think that’s a positive result, but I can’t find much on the web to confirm.  I will call my primary care tomorrow.  But thought I’d ask you all tonight.  Thanks for accepting me into your group and thanks in advance for your input.

Share this post


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


Welcome to the community, Kristina.

Test ranges vary by lab, so having just the result number is not enough to offer an informed opinion. But my guess is that 78 on ttg IgA is very likely to be a positive in any case.

If positive, it is suggestive of celiac disease. The ttg IgA is indicative but not definitive. There are seven tests related to celiac disease that I am aware of, with one additional control that is not specific to celiac disease but validates the other IgA results.

Deaminated gluten tests are highly specific. There is some information about them here from the US NIH

Share this post


Link to post
Share on other sites

I'm no expert on test results, that part is complicated & best left to the doctors. However, what I can tell you is that I had no idea that I had issues until my 1 yr old was diagnosed. Our first assumption was that it stemmed from my husbands genetics (partially true) because he had years of undiagnosed problems. For me, I never would have guessed celiac, I suspected I had an underactive thyroid but thats it. Surprise surprise...after going gluten-free, I had more energy, lost weight & realized I had been bloated all the time & didn't know it, migraines disappeared, brittle fingernails grew strong, etc, etc. Celiac is a malabsorption issue & causes vitamin deficencies - thus the signs & symptoms vary by person & aren't always obvious gi symptoms. Good luck and keep in mind, its the only disease completely in your control - no drugs, just food!

Share this post


Link to post
Share on other sites

Welcome to the board.

 

As Peter said, it's hard to comment on test results without a lab range, but ttg ranges are usually up to about a 20 and a 78 is far beyond that, and  a 1992 is astronomically high. With ttg IgA tests that are soooo positive, there is little doubt that celiac is causing that result. When ttg test results are close to the normal range, the slightly positive result "can" be caused by other autoimmune diseases or sicknesses.

 

Waiting until June is a long time for your daughter to keep eating gluten when it makes her sick. Is it possible to get your daughter's appointment moved up?  If not, you might want to request the remaining celiac panel, and then reduce her gluten intake until a few weeks before seeing the GI specialist - he might want to schedule an endoscopic biopsy to check the intestinal damage, and if she is eating gluten-free the damage might heal by then.

 

The remaining celiac panel is:

  • ttg IgG (and ttg IgA)
  • total serum IgA (the control test Peter mentioned)
  • DGP IgA and DGP IgG
  • EMA IgA
  • AGA IgA and AGA IgG (these are older and less accurate tests)

You should have these tests done too. It sounds like you have it too even if you have no obvious symptoms (like headaches, achiness, fatigue or hairloss). Remember that the tests will be inaccurate if you stop eating gluten before doing them, so don't cut out gluten until you are satisfied that your testing is done.

 

Good luck with the future appointments and testing.  :)

Share this post


Link to post
Share on other sites

Thanks all for your input.  The endocrinologist ran a bunch of blood tests on my daughter because of her short statue.  The only ones in the “Celiac Panel” were the Immunglobulin A which came out at a 65 and the Tissue Transglutaminase IgA which was 1943.4 (my original post was from memory and slightly off)  I don’t like the idea of waiting until June because I don’t want to cause anymore damage to her body, but she had no other symptoms besides her height so she feels fine.  We are on a cancelation waiting list, so we will see if we can get in sooner.

  I asked my OBGYN to run the Transglutaminase test just to rule me out…never suspected a positive result.  I see my Primary care on Tuesday to follow up, maybe he will run a more extensive test.  He is my daughter’s Doc too so, I will ask him if we should run the rest of the panel suggested.  All this stuff is new to be, not really how I wanted to continue my education, but best to know now, and good that it is something controllable by a healthier diet not a lifetime on meds.  

Best to all of you.

Share this post


Link to post
Share on other sites
Ads by Google:


Also began wondering is I should be even more alarmed by the extreemly high Tissue Tranglutaminase IgA if 1942.3.  Really hoping it doesn't indicate anything more sinister than Celiac.  I will talk to the Primary care next week, but why do I always freak out on the weekends.  Has anyone ever even seen a value that high?

Share this post


Link to post
Share on other sites

Also began wondering is I should be even more alarmed by the extreemly high Tissue Tranglutaminase IgA if 1942.3.  Really hoping it doesn't indicate anything more sinister than Celiac.  I will talk to the Primary care next week, but why do I always freak out on the weekends.  Has anyone ever even seen a value that high?

I doubt it's anything else. Usually the more positive it is the more likely it is celiac, it's the low ttg tests that often show up with other problems.

 

Hang in there.  :)

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
      108,390
    • Total Posts
      941,015
  • Member Statistics

    • Total Members
      66,402
    • Most Online
      3,093

    Newest Member
    Audrey’s Mom
    Joined
  • Popular Now

  • Topics

  • Posts

    • Welcome!  Here is more information about a gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ I would personally go for the maximum amount of tine and would consume as much gluten as I could tolerate 1 to 2 slices a day.  Why?  Researchers really do not know who builds antibodies fast.  Some can do it in as few as a few weeks and others take much longer.  Where do you fit?  You do not know, so considering the maximum recommendation.   Do not be horrified about your doctor googling.  That is an excellent sign, in my opinion.  My neighbor is an ER doctor.  He googles all the time and combining that with his vast medical training and work experience, allows him to quickly help patients.    There is no way a doctor can know everything about disease and treatment.   I wish you well!  
    • I have not found any that are reasonable (a gluten-free kit is available on Amazon and they want  $50 ).  Either you make the GINGERBREAD walls from scratch (gluten free)  or just use cardboard as a base and “glue”  on gluten-free gram crackers or “stucco” (fondant)  with frosting or   We never eat the end product; however, the kids consume plenty of decorations while it is assembled.  I would not recommend handling a gluten gingerbread house.  It is too crumbly and the risk for cross contamination is great.  So, make a gluten free version or create a new holiday tradition.  
    • My daughter who is 9 and newly diagnosed went on a secret gluten binge about a month ago.  I had her gluten free cupcakes in a package next to the gluten containing cupcakes.  She decided to test it out and ate 3 or 4 mini gluten filled cupcakes in about 10 minutes.   She ended up super sick and threw up a few times.  It was a good learning experience for her.  She now turns down cupcakes at parties.   I am Room Mom for her class this year and bring both gluten free and store bought for the class.
    • Looks like you tested negative on the celiac blood tests.  Who ordered the tests?  Reticulin has not been used for more than a decade.   This makes me think that your doctor may not be so celiac-savvy.  Why does that matter?  Some 10% of celiacs are seronegative.  If celiac disease is strongly suspected, a  GI might want to confirm with an endoscopy.   Also, you did not say how long your gluten challenge was before that last blood test.  A challenge requires a person to be on a gluten diet for 8 to 12 weeks: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Do you have any risk factors, like family history, another autoimmune disorder, IBS?   https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220 It seems like the Gluten Free diet is helping your current symptoms of joint pain and rashes.  So, then you would be considered Non-Celiac Gluten Sensitive/Intolerant.  That diagnosis is done when celiac disease has been ruled out.  I can see why he recommended the gluten free diet.  You felt better!   You are going to have to decide if pursuing a celiac disease diagnosis is necessary for you.  I wish you well.    
    • Anyone kbow if aleve or Advil is safe to take for gluten free?
  • Upcoming Events