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

Waiting for results……

Lisa Jo3
 Share

Recommended Posts

Lisa Jo3 Newbie
Lisa Jo3
Posted

Hi I’m waiting on blood results but have decided to start gluten free anyway as I have the symptoms of a gluten intolerant person. So I have really bad constipation all the time and my stomach is bloated. Always feel uncomfortable after eating bread. Is it usual to have a ‘fuzzy’ head when you first start? 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Lisa Jo3!

You have only had one phase out of two phases of testing that is typically done to diagnose celiac disease. If your blood test numbers are positive, the physician will likely order an endoscopy with biopsy of the small bowel lining to check for the damage to the villi typically caused by celiac disease. This is the gold standard of diagnosis. If you start a gluten-free diet before that is complete you will likely sabotage the test as some healing of the small bowel lining would take place. Then you would be in the dilemma of having tests that give conflicting results.

According to Mayo Clinic guidelines, you should be consuming regular amounts of gluten for at least two weeks leading up to the endoscopy/biopsy. Mayo defines regular amounts of gluten as two slices of wheat bread (or the gluten equivalent) daily.

Many experience withdrawal symptoms when quitting gluten. It has additive qualities much like opiates. This could be causing your "fuzzy" head. We call this "brain fog".

You may also have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but is 10x more common but for which there are no diagnostic tests. Celiic disease must first be ruled out.

Edited by trents
Lisa Jo3 Newbie
Lisa Jo3
Posted
  • Author

Oh right ok. Hopefully this week will get results back so I’ll just carry on as normal x thanks x

trents Grand Master
trents
Posted
(edited)

Some healthcare system guidelines, like those in the UK,  will grant a diagnosis of celaic disease without the endoscopy/biopsy if the tTG-IGA antibody test score is 10x normal or greater. If the tTG-IGA test scores are postive but less than 10x normal, then it can take months to schedule an endoscopy/biopsy. If you live in the UK or another part of the world where the healthcare system is heavily socialized, be prepared for that. The national healthcare system of many European countries is under a great deal of stress.

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

If you go gluten-free and get relief from your symptoms, then you likely have your answer. If they do schedule an endoscopy due to a positive blood test then you could start eating gluten again 2 weeks before that test, but it's also possible that you may have found your answer after going gluten-free, and you may not decide to do an endoscopy. 

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. trents
      - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would...
    2. MI-Hoosier
      - MI-Hoosier replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy. With the condition my liver is in I am unsure moving back...
    3. trents
      - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is...
    4. MI-Hoosier
      - MI-Hoosier posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Test uncertainty

      Hi, I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect. During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am...
    5. Sunshine4
      - Sunshine4 replied to Sunshine4's topic in Related Issues & Disorders
      3

      Neurologic symptoms - Muscle Twitching and Hand Tremors

      Many apologies for somehow changing your first name Scott!
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,253
    • Most Online (within 30 mins)
      7,748
    MI-Hoosier
    Newest Member
    MI-Hoosier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Test uncertainty

      By trents · Posted

      To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
      Test uncertainty

      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Hi,  I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect.   During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am 54. Do I need a biopsy to rule celiac in or out with this mixed test? Any thoughts are appreciated.  
    • Sunshine4
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Sunshine4 · Posted

      Many apologies for somehow changing your first name Scott! 
×
×
  • Create New...