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

Question About Celiac Blood Test Results- Advice Needed.

Jennifer81

Recommended Posts

Jennifer81 Newbie
Jennifer81
Posted

Hello Everyone.

 

This is my first post in this community and I am happy to have found such a supportive site. :)

 

I do have a question about a blood panel test I recently took.

 

I had the ttg blood test taken and scored what they call in the "grey" for Celiac D.

 

0-3 Neg

4-9 elevated

10 + Positive

 

I scored a 6- and my GI Doc said I was mildly elevated. They told me I did  not test either negative or positive for Celiac Disease.

They only way in which they can be 100 certain is to go trough with an endoscopy/biopsy. I have had two endoscopies back in 2008-2009

and both are  very hard for me to go through. I decided to go gluten free to see if my symptoms clear up a bit. I will re-test in another 6 months to see if anything has changed. The antibodies have nothing to due with gluten sensitivities either you have them or you don't.  I was told certain people just have a raised level of antibodies. I would hate to under go another procedure just to find I do not have it. I do however need to know what is going on inside my system and need advice from anyone who has a better understanding of my test results or advice on what they think the results mean or I should do.

 

I wish I either scored a Neg or a Positive.....its always like this for me.

Has anyone ever had this happen and what did you do?

 

Any advice will help out here.

 

Thanks

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Did they test for celiac when they did the old biopsies?

Just from my personal experience, my blood test showed barely positive but my biopsy showed moderate to severe damage. I was also anemic and found out after my diagnosis to have osteopenia and osteoporosis.

If you do another biopsy, be sure they take 6 or more samples.

ravenwoodglass Mentor
ravenwoodglass
Posted

Can you get your doctor to order a complete celiac panel? That would be the first thing I would do if you are reluctant to have another endoscopy. Get the panel before you go gluten free as if you go gluten free first the panel will come back a false negative.

After all your testing is finished for celiac that you choose to do then do give the diet a good strict trial no matter what the results.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi and Welcome to the Forum!

 

I agree that you should request the full blood panel of tests - but you can't go gluten-free before all testing is complete.

FWIW... the cut-off for my lab for the ttg iga was 11.  I was at 13.  Some would call that a "weak positive".  I too had moderate to severe villi damage - found via the endoscopy.

As far as I'm concerned being "grey" or "weakly positive" is like being "weakly pregnant".  Definitely push your doctor to get to the bottom of it.  Make sure you're eating the equivalent of at least one piece of bread every day, get the full Celiac panel of blood tests, and confirm with a biopsy.  The biopsy can be important because they also check for other issues, not just Celiac.

I would also suggest that you get your other nutrient levels checked, especially vitamin D, calcium, and iron levels.  A bone density test is also a good idea.

Jennifer81 Newbie
Jennifer81
Posted
  • Author

Can you get your doctor to order a complete celiac panel? That would be the first thing I would do if you are reluctant to have another endoscopy. Get the panel before you go gluten free as if you go gluten free first the panel will come back a false negative.

After all your testing is finished for celiac that you choose to do then do give the diet a good strict trial no matter what the results.

Hello:

 

I did call my gi doc now to check to see if the whole Celiac Panel was done and the nurse said it was. She explained to me the results. The IGA/TTG result came back a 6. And my Immunoglobulin A was a 241 in the healthy range ( 91-414)  was normal. She explained again the only way to be sure was to get the biopsy done. Are there any other blood tests to take? My doc ordered the Celiac Panel so I think this may be it for blood testing.......

Jennifer81 Newbie
Jennifer81
Posted
  • Author

Did they test for celiac when they did the old biopsies?

Just from my personal experience, my blood test showed barely positive but my biopsy showed moderate to severe damage. I was also anemic and found out after my diagnosis to have osteopenia and osteoporosis.

If you do another biopsy, be sure they take 6 or more samples.

Yes they did ,and it was negative for Celiac. Im not anemic but if I do go through with a biopsy I will be sure they take plenty of samples...:) Ive read though that Celiac can evolve at any time? So even though I tested neg then I could have it now.. Did your symptoms clear up when you started a gluten free lifestyle? How soon were you feeling normal again after changing your diet?

cyclinglady Grand Master
cyclinglady
Posted

It took me six weeks to see any results and one year to feel completely normal. My only symptom was anemia, but between the blood test and the biopsy, I ate a lot of gluten, and then developed some intestinal issues. Those are the ones that improve within six weeks of remaining on a gluten free diet. My husband has been gluten free for 13 years so the gluten-free learning curve was easy for me and allowed for faster healing (i think).

You may not be celiac, but have NCGI (non-celiac gluten intolerance) and only a gluten-free can determine that as there are no tests for NCGI.

You are right that you can develop celiac disease at any time.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Hello:

 

I did call my gi doc now to check to see if the whole Celiac Panel was done and the nurse said it was. She explained to me the results. The IGA/TTG result came back a 6. And my Immunoglobulin A was a 241 in the healthy range ( 91-414)  was normal. She explained again the only way to be sure was to get the biopsy done. Are there any other blood tests to take? My doc ordered the Celiac Panel so I think this may be it for blood testing.......

 

That is not a complete celiac antibody panel (blood tests).

 

Missing were:

 

tTG-IgG

EMA-IGA - this is usually run with positive tTG-IgA...I would insist on it as yours was elevated.

DGP-IgA

DGP-IgG

 

Make sure you do not remove gluten until you are sure testing is complete.

 

Hang in there :)

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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.