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
TomBone
Posted

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
nvsmom
Posted

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
TomBone
Posted
  • Author

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
nvsmom
Posted

Good luck!

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,432
    • Most Online (within 30 mins)
      7,748
    ainsleydale1700
    Newest Member
    ainsleydale1700
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.