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

Celiac Panel Normal But Still Have Celiac?

hbelle16

Recommended Posts

hbelle16 Newbie
hbelle16
Posted

Good afternoon. So heres the story...my four year old just got diagnosed with celiac. We were told to have the family tested...I figure it must be me carrying it because Ive had stomach issues all my life and my husband has had none and also my dad has a lot of stomach issues. Well I just got a call saying that the blood test came back normal. SO I was just wondering if anyone out there has had a normal blood test but still had celiac? Thanks!

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

Celiac.com Sponsor (A8-M):


Marilyn R Community Regular
Marilyn R
Posted

Hi, and welcome to the forum.

You know the old saying "If it walks like a duck...?"

False negatives are commen. The best thing to do is to see if there is improvement from going gluten-free, imho. Others believe you should do a full gluten challenge (eat the equivalent of six pieces of bread a day, then get tested. The gold standard is, of course the endoscopy and biopsies to test for villi.

If I were in your shoes, I'd go for trying a gluten-free diet for the whole family and see if things improve. But plenty of people and most doctors would say I'm not giving good advice.

jenn42 Explorer
jenn42
Posted

My 11 year old DD was diagnosed in February with Celiac. Blood tests and Endoscopy were slightly postitive, but still positive. My DS, DH and I were all negative. My recommendation would be to keep your child on gluten and get an Endoscopy done if you want. I have noticed a huge difference in my DD since we have gone gluten-free. Her's is mainly behavior and headaches.

Good luck.

Cara in Boston Enthusiast
Cara in Boston
Posted

You can have non-celiac gluten intolerance and have all the symptoms but test negative. When my son was diagnosed (blood and biopsy) I realized I had all the symptoms and was tested too (whole family was tested). My first blood tests came back positive, but when I went to see the GI (celiac specialist) he re-did the test and it was negative. My endoscopy was negative too. I went gluten free with my son anyway and all my pesky symptoms were gone within weeks (some within days). My doctor has since diagnosed me with non-celiac gluten intolerance. Same symptoms, same treatment, will test negative. Strange.

Going gluten free will also help you with the diet for your child. Much easier to do when you are not alone.

Cara

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood test was negative but the GI did an endoscope to see if she could find a reason for my severe digestive issues and weight loss. I was told my damage was severe and most definately was Celiac.

About 20-30% of Celiacs test negative in their blood work.

mommida Enthusiast
mommida
Posted

One of the tests for Celiac panel is IGA. It is estimated that 30% of Celiacs are IGA deficient. That is why total IGA count should be done.

When we had discrepencies in genetic testing. Prometheus labs suggested there is at least a 30% error rate for any blood testing. This is to allow for basic HUMAN error. Mistakes in the blood draw, specimen handling, and lab reporting.

Now the medical community is admitting that Celiacs do exist with negative blood tests. This usually has a connection to more nuerological symptoms.

If you choose to do an endoscopy, the patient needs to be consuming gluten. An endoscopy may have biopsies taken from the correct areas to prove damage. It can also give a baseline of damage. Rule out/in any other associated disorders with the symptoms.

  • 3 weeks later...
hbelle16 Newbie
hbelle16
Posted
  • Author

thanks for all the answers...i went to the gi and he said if my husbands blood work is also normal I will get scoped, but also that eating gluten free might help me as well :)

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. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,845
    • Most Online (within 30 mins)
      7,748
    Paulaannefthimiou
    Newest Member
    Paulaannefthimiou
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
×
×
  • 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.