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

Negative Blood Test, Still Possible To Have Celiac?

cwnhokie

Recommended Posts

cwnhokie Rookie
cwnhokie
Posted

Hi there,

This forum seems to be full of good info.  I'm not sure I have enough info to properly ask my question though, but I'll try.

My son has been feeling badly for about a year.  He has had GI symptoms for about 6 months.  He has nausea, diarrhea, headache, fatigue, body aches, chills, hot flashes, weight gain, and most recently a kidney stone.  He is 12.  So far all of his blood work has come back normal.  He had a blood test for celiac but I can't remember what it was exactly and my dr hasn't given me the report.  They did fax it to his GI and he said that what was done was normal but that it wasn't complete.  He had a stool sample that showed inflammation in the gut and microscopic blood so he had an endoscopy and colonoscopy yesterday.  The GI said visually everything looked good.  We are now waiting on biopsy results.  Is it still possible that the biopsy will show celiac when everything else has been normal so far?  Just trying to figure out what to prepare for.  On one hand we are hoping that is not it, but on the other hand we are getting pretty desperate for answers.  He is currently on modified home bound for school and is no longer participating in sports.  Thanks for you help!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Its possible.  It really depends on how thorough they were with the blood tests. Some people don't make enough of the stuff one of the tests look for - so that test doesn't work for those people.

 

 

 

Open Original Shared Link

JodyM75 Apprentice
JodyM75
Posted

I had a biopsy done when I was going in for a routine EGD (I have a hiatal hernia and get these every 5 years).  The results came back with mild to moderate damage consistent with celiac.

 

I had blood tests two weeks later that were normal, no antibodies.  Is your son currently eating gluten?  You need to be on a gluten diet for the bloodtests to mean anything.

 

You need ot make sure, though, they are sending you for the right test.  My doctor originally gave me a bloodwork form to check for lupus!  The test came back negative for lupus, but I had to request the correct bloodwork form and then fight not to pay for the one done in error.  Good luck!

cyclinglady Grand Master
cyclinglady
Posted

Make sure you had the complete celiac blood panel. Your GI doc did say it was incomplete. Get copies of the lab reports. Here is a list:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

Welcome to the forum and let us know how it goes! Hope your son feels better soon! Keep eating gluten until all testing is complete.

Cara in Boston Enthusiast
Cara in Boston
Posted

My son was only positive on some of the blood tests, perfectly normal on the others, so if you were not given the complete panel of tests, it could be missed.  Also, some people (esp. kids) never have a positive blood test.  It is possible to have negative tests and still have celiac.  Another thing to consider is non celiac gluten sensitivity.  Same symptoms, just no positive blood tests . . . 

 

A biopsy can also be negative and that doesn't necessarily rule it out.  The damage can be missed by the doctor.  

 

After he's had all the tests (have the blood work re-done) you can still try the diet.  Think of it as the "final" test.  If his symptoms improve, you will know gluten is the problem.  Keep a journal of his symptoms since the change can sometimes be gradual.  You might not notice it at first.

cwnhokie Rookie
cwnhokie
Posted
  • Author

all the biopsies came back normal.  He says that doesn't correlate with the stool sample findings of blood in the stool and inflammation in the gut and he doesn't know why.  said there maybe something going on in the part of the small intestine where they can't get the scope.  Said we could get a better look with an mri or a capsule endoscopy.

  • 1 month later...
cwnhokie Rookie
cwnhokie
Posted
  • Author

Update

 

The GI did another stool sample which came back normal this time.  We went to see an interative medicine doc who ran a bunch of tests.  We haven't gotten everything back yet but she said that she has gotten back a test that says he's highly sensitive to cow's milk (normal <2 he was 16.8 and lesser to gluten (normal <2 he was 7) She recommended that he have no dairy and less if not eliminate gluten.  So he has been gluten and dairy free for about 2 weeks, we thought we saw some improvement in the first week and then he had a few bad days again, but not as bad as before.  He has not gotten back to as good as he was the best day last week and today he says he thinks he may have a stomach bug because he is so nauseous.   I've been trying to research what these tests actually mean and have found lots of conflicting info.  I'm so confused and frustrated and so is he.  Last Tuesday he had lemonade from walmart that said it could contain trace amounts of wheat and milk so we were blaming that, but I'm pretty sure his diet has been clean since then.  The dr also said his vitamin d was low and that his neurotransmitters where very interesting.  We go back on the 30th to get all the results.  He's been to school twice since Christmas for an hour each time and is on home bound.  He hasn't been participating in any activities like sports or scouts.  

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

Celiac.com Sponsor (A8-M):


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 Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748
    Brianman
    Newest Member
    Brianman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...