Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Test Results How Reliable?


TomBone

Recommended Posts

TomBone Newbie

Hi all, happy to find this forum!

In the last few months I've had stomach & digestion issues and wanted to check whether it has anything to do with gluten.

I used to eat at least 2 loafs of bread every day as well as other products which seem to have gluten (beer, cookies, soy sauce, etc.).

The doc I asked for a test, made me do four different tests (sorry if the test names are not 100% correct, I'm trying to translate them from Spanish):

 

Antic. Anti endomysial IgA - negative
Antic. Anti endomysial IgG - negative
Transglutaminasa IgG - 9.7U/ml (positive above 10)
Transglutaminasa IgA - 8.3U/ml (positive above 10)

Now, I'm wondering what exactly those results mean. On first sight, they are negative, but Transglutaminasa IgG is very close to the threshold. In fact, I stopped eating bread around 2 weeks before the test (but occasionally had things with gluten) and didn't drink beer for more than 2 months. Could the values have dropped just below the threshold because of that?

How high are valued typically if you have celiac disease? Would they be well over 10U/ml?

I'm hesitant to do any additional testing due to the high cost (my insurance refuses to cover it).

 

Also, from what I've read it's possible to be gluten intolerant but celiac disease negative? Are the negative effects on the gut similar in both cases or is it health-wise ok to eat gluten if intolerant?
Sorry for the very basic questions but I'm pretty new to all this and find the available information quite confusing...

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I like to refer to this report when discussing test reliability: Open Original Shared Link 

On page 12 it shows the sensitivity of the EMA IgA and tTG IgA, which is the likelihood of the disease being caught by the test.  Both tests can miss up to 25% of celiacs with a sensitivity of 75-100% and 75-95%. They are pretty good tests for most celiacs.

 

The endomysial tests (EMA) are similar to the tTG tests but they tend to detect more advanced disease.  If you are relatively new to celiac disease, it is possible to get a positive tTG with a negative EMA.  It is very unusual for a celiac to get a positive EMA with a negative tTG though.

 

The tTG IgG is not a very sensitive test.  It's sensitivity is as low as 40% which means it can miss the majority of celiacs.  This report discusses it a bit: Open Original Shared Link

 

Your tTG results are both fairly close to being positive and I would be suspicious too.  You might want to request the DGP IgA and DGP IgG (deaminated gliadin peptides) tests.  Those tests are the best for detecting early celiac disease and sometimes catch cases of celiac disease that the tTG tests do not.  

 

Make sure you are eating gluten in the 2-3 months prior to testing.

 

Another option is the biopsy.

 

If you can't get further testing, or the tests are negative, you should be retested every year or so if you continue to eat gluten.  If you decide to go gluten-free anyways, further testing is not crucial.

 

Best wishes and welcome to the board.  :)

TomBone Newbie

Nicole, I appreciate your reply and link to the report. I will check with my doctor if they can do DGP tests here.

nvsmom Community Regular

Good luck!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,300
    • Most Online (within 30 mins)
      7,748

    Philbin
    Newest Member
    Philbin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.