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

Negative Blood Tests


Mari-O

Recommended Posts

Mari-O Newbie

I'm so tired and worried(and tired of being worried and feeling sick) and all the doctors are telling me different things, ranging from "it might all be in your head" (like hell it is) to "just watch what you eat."

Please tell me it can still be celiac if the blood tests came back negative? Otherwise I've no idea what it could be. All the symptoms seem to match perfectly. How seriously should I take the test results?


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



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

I'm so tired and worried(and tired of being worried and feeling sick) and all the doctors are telling me different things, ranging from "it might all be in your head" (like hell it is) to "just watch what you eat."

Please tell me it can still be celiac if the blood tests came back negative? Otherwise I've no idea what it could be. All the symptoms seem to match perfectly. How seriously should I take the test results?

What you're being told by your doctors is not all that unusual. I've read it many times here on the forum. It is entirely possible that you have celiac and negative blood tests are not all that uncommon. Even negative biopsies are not that uncommon so when all testing has been done, give a gluten-free diet a good try and you may have your answer in spite of what the results are.

If you are going to have an EGD/biopsy, make sure you continue eating gluten until all tests are done.

ETA: Oh, and welcome!!!

Skylark Collaborator

Welcome. Don't you hate doctors like that?

It's still possible you're celiac, but you could also have what's called non-celiac gluten intolerance. Gluten intolerance is pretty common and can cause the same sorts of symptoms as celiac.

You can push for a biopsy but it might be easier to just go off gluten for a couple months and see if it helps.

raesue Rookie

I feel exactly the same way. I wish it were just doctors, though. my boyfriend of nine years is telling me its all in my head. I wanted the test so badly just so I could prove I had a justifiable concern. I read a study someone had mentioned on a forum by Dr Peter green at Columbia. he looked at blood test results for biopsy diagnosed patients and found that in practice, the tests are only 70% accurate. for those without complete villous atrophy, the positives were below 50%. he also found no positive ttgs in that group. apparently the rate of iga deficiency in celiacs is 20%. it really made me feel like the test is practically useless. I'm sorry to hear about your trouble, but its nice to find someone else in the same situation. I think everyone I know is getting tired of hearing about it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,655
    • Most Online (within 30 mins)
      7,748

    Uli
    Newest Member
    Uli
    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

    • trents
      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
×
×
  • 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.