• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Are Blood Tests Always Accurate For Celiac ?
0

Rate this topic

6 posts in this topic

Recommended Posts

I have a granddaughter and a great grandson that had negitive results in their blood tests for celiac. She suffers so from eczema ( think more likely Dermatitis Herpetiformis ). And he is having behavioral problems.

I know one symptom in children is ADHD. He is so skinny and hyper. Very sensitive and loveing when he is in control of himself.

I have celiac and I know it is inherited.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi, and welcome to these boards.

I don't know how old those kids are. But those blood tests are notoriously unreliable in children under six, and are almost useless for babies and toddlers unless they are at death's door.

And in older kids and adults those tests are somewhat more reliable, but still far from perfect. A negative test can absolutely NEVER rule out celiac disease (and that goes for the biopsy as well).

My oldest grandson (now 5 1/2) looked like one of those starving third world children, just skin and bones until he was four years old. He was hyper, extremely emotional (crying for hours over little things, being inconsolable, and as a result treated like he was a wimp), and wanted to eat all day long. He would cry when my daughter would tell him that lunch (supper) was over and he wouldn't get any more until the next meal.

Finally last year she saw the light and put herself and her five kids on the gluten-free diet. What a difference! Little Ethan stopped being so emotional within days, and immediately started putting on weight. He is a very normal little kid now. Still slim, but not skin and bones. He is heavy! Before it would frighten me how light he was when I picked him up.

Eczema could be caused by dairy, gluten, nightshades, corn, eggs or other intolerances. If you think that your granddaughter's eczema is DH, you may be right, as you probably know what it looks like.

In her case, having a skin biopsy (taken BESIDE an active blister, my idiot dermatologist took mine right in the middle of the rash and then told me I definitely didn't have DH) would be a good idea. If it comes back positive, she would have an official celiac disease diagnosis. If it is negative, I would try the gluten-free diet anyway, was gluten can cause psoriasis and eczema as well as DH.

Maybe you could convince the parents to just try the gluten-free diet anyway? And if not, maybe they would be receptive to testing with Enterolab, which is much more sensitive than a blood test.

Share this post


Link to post
Share on other sites

I'm totally with Ursa Major because I had to have three biopsies before they got it right. The derm has to know what they are doing, and the lab has to know how to read it.

Share this post


Link to post
Share on other sites
my idiot dermatologist took mine right in the middle of the rash and then told me I definitely didn't have DH)

This just illustrates how unreliable testing can be when the people taking the tests don't know what they are doing.

The same goes for blood tests and biopsy and tsting children in general.

Its not a black and white test even if sampled correctly. Its about levels above 'normal'.

Many things can influence the tests ... and like any other of this type is someone with a result of 19.5 sicker than someone with 20.5 if the 'normal high range is 20. Perhaps the same two people sampled a day later would have reversed results. Is one positive and the other negative?

Secondly, if you stick to the diet then the numbers SHOULD go down. This doesn't mean you are cured.. it means its under control ...

By the time many of us actually get a test ... we have already tried everything, celiac disease is like that! Its the last thing the Dr. tests for in many cases and many of us already noticed we feel bad eating wheat so we either cut it out or reduced it ourselves.

When you add to this the random element of how experienced the person taking the sample or blood is and lack of advice that we must eat gluten for a period before testing then it really adds a random element.

So its worth repeating Ursa

A negative test can absolutely NEVER rule out celiac disease

Share this post


Link to post
Share on other sites

My blood work was defintively negative. Finally after two years on a gluten-free diet, they did a biopsy and found celiac related damage, even after two years gluten-free. My son has negative blood work, when he is 100% gluten free, he stops complaining about stomach aches and he doesn't act like he has a hole in his stomach. My niece has negative blood work, and at nearly five she is the size of an average 2 year old. Is it celiac? I don't think my sons will die if they are on a gluten diet, but I don't think it's doing them any good either.

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks for the output I will pass it along to my Grand daughter.

Share this post


Link to post
Share on other sites

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

0

  • Forum Statistics

    • Total Topics
      108,109
    • Total Posts
      939,701
  • Member Statistics

    • Total Members
      66,091
    • Most Online
      3,093

    Newest Member
    Kazza00
    Joined
  • Popular Now

  • Topics

  • Posts

    • They found my niece’s Crohn’s with a pill camera — way beyond the reach of both scopes.  But my niece was 19.  Not sure if they would consider a pill camera in a younger child.   Happy that your doctor is willing to work through all this!  
    • I am sorry that your son is ill.  It is time to have his antibodies checked to see if they are coming down as recommended by celiac experts as part of follow-up care.  You might think he is gluten free, but maybe he is getting hidden sources of gluten.   http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ If his result are fine and celiac disease is not the cause, your GI can look into other issues (e.g. IBD: Crohn’s or Ulcerative Colitis).  Consider a food and symptom diary.  Is he off dairy?  Lactose Intolerance is common in celiacs.  It can be temporary.  Of course he can react to any food.  I hope you and your doctor can figure it out.     
    • Consider Graves Disease.  My mother struggled with it.  She did not have all the classic symptoms of Graves, but she did end up with permanent eye damage (she sees double).  My cousin had it even more severe.  Besides eye muscle pain, she had the classic eye budge (Grave’s affects the muscles in the eye and/or other muscles in the body producing weakness). I have have Rosacea, but it presented  as Ocular Rosacea and not on my face.  My Hashi’s first presented with thyroid enlargement.  I was never cold, lost hair or gained a pound.  My celiac disease presented as anemia with none of the classic GI issues.  What I am saying is that Autoimmune Issues can have various symptoms and are often systemic.   There was a point where I was having thyroid swings.  When hyper my eye muscles hurt.  Scared me because my mom was pretty much forced to give up working.  So...... Do not mess with your eyes.  Get checked by an ophthalmologist.  
    • My son was diagnosed celiac in May 2017 and been gluten free since April. He still has mucus in his bowel movements even though he eats gluten free only. Has anyone else got these symptoms.  Going to the Dr tomorrow as getting  no answers off his paediatrician. I am wondering if he got intolerance to something else as well. 
    • Hi there. I've had ongoing issues with my eyes for a few months now, including pain in my eye orbit, swelling over and under my eyes, dry, wrinkled and flaking under eye skin that comes and goes. I thought that I was allergic to mascara that I had just purchased; that seemed to be when my symptoms began. I'm presently I'm thinking that I have blepharitis. I'm also wondering about Sjorgens syndrome. I have an appointment with my ophthalmologist in a few weeks (my GP told me to put vaseline around my eyes-thanks for nothing!). I'm practicing good eyelid hygiene and have noticed an improvement in just a day! Maybe you can check into those? Good luck to you!
  • Upcoming Events