Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 - help

NicolaVrabel
 Share

Recommended Posts

NicolaVrabel Newbie
NicolaVrabel
Posted

I have been gluten free for over two years.  I have ataxia, and my neurologist thinks it is from gluten.  I quit eating gluten and it seemed to improve.  I had a celiac panel of blood work done and it showed that my gliadin antibody was 48 - abnormal.  I thought it would have levels of 0 since I am gluten free.  Does this indicate that I have celiac?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted (edited)

It likely indicates you are not truly eating gluten free. Gluten is probably getting into your diet from unexpected sources. Research shows that most people who claim to be eating gluten free are actually eating low gluten. Do you still eat out at restaurants? Have you checked your pills and supplements? Do you live in a household where others are not eating gluten free? Have you checked everything in your cupboard lately to see if food companies have changed the formulation, such that what was once gluten free is no more? Most people trying to eat gluten free don't take into account cross contamination. For example, you order a hamburger without the bun. But that meat patty was probably cooked on the same grill that breaded chicken patties were cooked. And those gluten free spaghetti noodles at the Olive Garden may have been boiled in the same pot as their regular wheat noodles. Or, the gluten free thing was stirred with the same spoon that was used to stir wheat things. Or those French fries at McDonalds were cooked in the same vat of oil that breaded chicken nuggets were. Etc. , etc.

Maybe this will help: 

 

Edited by trents
Link to comment
Share on other sites
NicolaVrabel Newbie
NicolaVrabel
  • Author
Posted

I've found a vitamin that is questionable.  I am totally gluten free, eat out only at gluten free places.  I wonder about air fresheners and dog food.  Would this matter?  Do you think it means I have celiac too?

 

Link to comment
Share on other sites
trents Grand Master
trents
Posted

https://gluten.org/2021/03/23/43-foods-where-gluten-may-be-hidden/

Link to comment
Share on other sites
trents Grand Master
trents
Posted
9 minutes ago, NicolaVrabel said:

I've found a vitamin that is questionable.  I am totally gluten free, eat out only at gluten free places.  I wonder about air fresheners and dog food.  Would this matter?  Do you think it means I have celiac too?

 

You said your gliadin antibody was "abnormal". I took that to mean that you were tested for celiac disease and were positive. Can you clarify what testing you have had done and post the numbers please with reference ranges? By "gliadin antibody" are you referring to total serum IGA or some specific IGA component?

Link to comment
Share on other sites
NicolaVrabel Newbie
NicolaVrabel
  • Author
Posted

It says Celiac Panel.  Endomysial antibody is negative, gliadin antibody IGA is 5 - negative, gliadin IGG is abnormal (48) and transgutaminas IGG is negative, transgultaminas IGA is negative.

Link to comment
Share on other sites
trents Grand Master
trents
Posted

The "abnormal" gliadin IGG could indicate celiac disease. Do you have a reference range for that one? What is normal? Different labs use different reference ranges so there isn't a standard. When this testing was done, were you already trying to eat gluten free by any chance?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted
58 minutes ago, NicolaVrabel said:

It says Celiac Panel.  Endomysial antibody is negative, gliadin antibody IGA is 5 - negative, gliadin IGG is abnormal (48) and transgutaminas IGG is negative, transgultaminas IGA is negative.

You mentioned that you are totally gluten-free. Were you gluten-free before you took the celiac blood test? If so, you will have false-negative results, as you need to be eating about 2 slices worth of regular wheat bread for 6-8 weeks before taking this test.

Link to comment
Share on other sites
trents Grand Master
trents
Posted

Okay, in reading back through your posts, I think what I see is that you were eating gluten free for two years and then had celiac panel testing done because your neurologist suspected celiac disease as the cause of your ataxia. Is this correct? If so, the celiac panel testing results would not be reliable. Even if someone does have celiac disease, if you gluten is removed from their diet, the inflammation in the small bowel lining will subside and antibody levels will plummet. The antibodies are markers that inflammation is happening.

Link to comment
Share on other sites
Kate333 Rising Star
Kate333
Posted

If you are regularly eating out, even at so-called gluten-free places/restaurants, or buying packaged foods labeled gluten-free (not certified gluten-free), you are likely still regularly consuming gluten.  Unfortunately, even restaurants that advertise themselves as having gluten-free menus, and packaged food manufacturers with gluten-free labels, still pose a very high risk for G cross-contamination, as Trents noted.  Moreover, these companies are rarely really inspected to ensure the truth of their claims.  

Try shopping for, cooking, and eating only fresh, unpackaged/unprocessed foods for a few weeks (only fresh meat, fruits, veggies) and see how you feel.   If you notice marked improvement in symptoms, you have your answer and know you must make eating habit changes to more strictly avoid G exposure.  If you want more objective, scientific evidence (as opposed to mere speculation), you will have to resume intentional G eating, then get retested with an updated blood test (TTG/IgA) to more accurately assess your current G antibody levels.  

 

Link to comment
Share on other sites
NicolaVrabel Newbie
NicolaVrabel
  • Author
Posted
3 hours ago, Scott Adams said:

You mentioned that you are totally gluten-free. Were you gluten-free before you took the celiac blood test? If so, you will have false-negative results, as you need to be eating about 2 slices worth of regular wheat bread for 6-8 weeks before taking this test.

I was gluten free, that's why is seemed odd to have high levels.  Do you think it is worth eating the gluten to take another test?

 

10 minutes ago, Kate333 said:

If you are regularly eating out, even at so-called gluten-free places/restaurants, or buying packaged foods labeled gluten-free (not certified gluten-free), you are likely still regularly consuming gluten.  Unfortunately, even restaurants that advertise themselves as having gluten-free menus, and packaged food manufacturers with gluten-free labels, still pose a very high risk for G cross-contamination, as Trents noted.  Moreover, these companies are rarely really inspected to ensure the truth of their claims.  

Try shopping for, cooking, and eating only fresh, unpackaged/unprocessed foods for a few weeks (only fresh meat, fruits, veggies) and see how you feel.   If you notice marked improvement in symptoms, you have your answer and know you must make eating habit changes to more strictly avoid G exposure.  If you want more objective, scientific evidence (as opposed to mere speculation), you will have to resume intentional G eating, then get retested with an updated blood test (TTG/IgA) to more accurately assess your current G antibody levels.  

 

I don't think it's worth eating it again.  What do you think?

 

Link to comment
Share on other sites
Scott Adams Grand Master
Scott Adams
Posted

As long as you don't need a piece of paper that says you have celiac disease in order to stay on a strict gluten-free diet for life, then no, I don't think a positive test result is necessary. Some people need this, but it sounds like you already know that gluten causes issues for you.

Link to comment
Share on other sites
NicolaVrabel Newbie
NicolaVrabel
  • Author
Posted
2 minutes ago, Scott Adams said:

As long as you don't need a piece of paper that says you have celiac disease in order to stay on a strict gluten-free diet for life, then no, I don't think a positive test result is necessary. Some people need this, but it sounds like you already know that gluten causes issues for you.

Thanks

Link to comment
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
 Share
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. cristiana
      - cristiana replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Potential diagnosis

      Hi @matts Yes.... it's a mystery to me why we are holding onto that 'o'. I expect it won't be there in 100 years! I think you are very wise to go back to your GP to chat through your options. If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS. If not, and you would...
    2. matts
      - matts replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Potential diagnosis

      Hi Cristiana, You’re spot on, I am from the UK! In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day. Thank you for the...
    3. cristiana
      - cristiana replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Potential diagnosis

      Hi @matts Welcome to the forum. I'm a coeliac living in the UK. I have a hunch you may be posting from the UK because of the way you spell 'coeliac.' Our American friends, quite sensibly in my opinion, drop the 'o'! Anyway, if so the UK, 'satisfactory' blood tests mean as follow: 'Satisfactory. Take no action - This means that the doctor...
    4. knitty kitty
      - knitty kitty replied to Neat1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Maybe celiac, maybe just ncgs?

      @Neat1, I so glad you're going to try Thiamine! Do let us know how it goes. Benfotiamine is the form of Thiamine that may be very helpful to you. Benfotiamine has been shown to promote healing in the intestines. Be sure to take a B Complex because all eight B's work together. Try to get a minimum of 300 mg a day of Benfotiamine. Higher doses...
    5. trents
      - trents replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Potential diagnosis

      For the doctor to say the results of the test were "satisfactory" is rather odd. By that did he mean he didn't think you have celiac disease.? I mean, the result of the test is positive for celiac disease. Or, did he mean that it was satisfactory in the sense of agreeing with your symptoms and family history as indicating celiac disease? It was a rather ambiguous...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,151
    • Most Online (within 30 mins)
      7,748
    Michael richard Devitt
    Newest Member
    Michael richard Devitt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Potential diagnosis

      By cristiana · Posted

      Hi @matts Yes.... it's a mystery to me why we are holding onto that 'o'.   I expect it won't be there in 100 years! I think you are very wise to go back to your GP to chat through your options.   If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS.   If not, and you would still like to know and can afford it, you could do what my friend did,  She went direct to a consultant at our local private hospital to have an endoscopy.  Her situation was different from yours in that she did not test positive, but she did have gastric symptoms.  Her Dad was a coeliac and she wanted to be sure she wasn't one of a small number of coeliacs that don't ever test positive in the blood test, but do have villous damage in their gut. I do hope things work out well for you - perhaps drop by and give us an update sometime! Cristiana 
    • matts
      Potential diagnosis

      By matts · Posted

      Hi Cristiana, You’re spot on, I am from the UK!  In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day. Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at!  I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results. Thanks again, Matt  
    • cristiana
      Potential diagnosis

      By cristiana · Posted

      Hi @matts Welcome to the forum. I'm a coeliac living in the UK.  I have a hunch you may be posting from the UK because of the way you spell 'coeliac.'  Our American friends, quite sensibly in my opinion, drop the 'o'! Anyway, if so the UK, 'satisfactory' blood tests mean as follow: 'Satisfactory. Take no action - This means that the doctor has looked at the results and deemed it to be very close to the normal range for the test and the result is not concerning. Some patients have consistently abnormal results that are 'normal' to them.'  Source: https://www.nrmc.nhs.uk/test-results#:~:text=Satisfactory.,are 'normal' to them. Now,  I have annual/biannual blood tests and get a few blood tests that consistently hover just above normal limits, and they come back with that typed next to them.  The doctors can look back at my records and see that the readings are normal for me. However, under your particular circumstances I would definitely request to be sent to a gastroenterologist.  Because although your GP considers your blood tests are satisfactory, i.e. just outside normal limits, they ARE nevertheless outside normal limits and you do have a first degree relative with Coeliac Disease.  I am no doctor but I would say this gives sufficient grounds for investigation, especially if you have been experiencing any gastric symptoms,  or seemingly unrelated things like headaches, tingling extremities, or tiredness - the symptoms of coeliac disease vary enormously from individual to individual. Also, may I ask you, have you been consuming gluten with most meals in the past few weeks prior to your blood test?  For a positive blood test,  coeliacs need to consume the equivalent of about 2-3 slices of gluten containing bread a day over a six to eight week period.  Because if you don't eat much gluten, you may not be reacting much.  Bear in mind that if you do go forward for further blood tests or an endoscopy, you will need to keep eating gluten. If it turns out you are a coeliac, in the UK a coeliac diagnosis will entitle you to all sorts of important NHS health monitoring and support, which in the long-term even if you are feeling well now, could be very beneficial to your health.   One other reason it would be good to know one way or another, is because if you turn out to be a coeliac, you will need to take the diet extremely seriously.  It can at times be a bit restricting, as you mother I am sure will tell you.  And gluten free substitutes can be expensive - my gluten-free pasta, my gluten-free chocolate biscuits, my gluten-free bread adds pounds to my weekly shop!! Cristiana      
    • knitty kitty
      Maybe celiac, maybe just ncgs?

      By knitty kitty · Posted

      @Neat1, I so glad you're going to try Thiamine!   Do let us know how it goes.   Benfotiamine is the form of Thiamine that may be very helpful to you.  Benfotiamine has been shown to promote healing in the intestines.  Be sure to take a B Complex because all eight B's work together.  Try to get a minimum of 300 mg a day of Benfotiamine.  Higher doses are needed to correct low thiamine.  Add a magnesium supplement.  Ask your doctor to check your Vitamin D level, which is frequently low in celiac disease.   Diamine Oxidase (DAO) supplements are digestive enzymes that may help until you start making sufficient amounts yourself with supplemented B vitamins. Chronic sinus infections are common in Celiac Disease.  
    • trents
      Potential diagnosis

      By trents · Posted

      For the doctor to say the results of the test were "satisfactory" is rather odd. By that did he mean he didn't think you have celiac disease.? I mean, the result of the test is positive for celiac disease. Or, did he mean that it was satisfactory in the sense of agreeing with your symptoms and family history as indicating celiac disease? It was a rather ambiguous remark in my opinion.
×
×
  • Create New...