Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

New doctor claims that blood test can detect celiac without gluten exposure.


moleface

Recommended Posts

moleface Explorer

I had an intake appointment with a new PCP today, and she tried to order a celiac antibody test without me having eaten gluten first. When I countered with "I'm not trying to be argumentative or claiming that an internet search trumps your medical training, but all the literature says it isn't possible to test positive without eating gluten first. Most recommend twelve weeks of exposure", she insisted that the elevated antibodies would always be present in a celiac sufferer regardless of whether they've eaten gluten. I'm not just extrapolating from what she said or putting words in her mouth - she specifically said that.

Has anyone else heard this? Obviously it goes against literally all the accepted information we have on this disease, but I'm wondering if doctors are being trained that this is correct. It wouldn't surprise me, considering that I previously had a gastro specialist insist that eating gluten for two days was sufficient for me to test positive.

She tried to urge me to take the blood test, claiming that it would bolster my case if I tested positive but supposedly wouldn't hurt my case if I happened to test negative. I had to talk her out of it. I know how that goes - the last time I let a PCP order an impromptu celiac blood test without gluten exposure, all subsequent doctors told me that the more recent negative test outweighed the older positive test. This new doctor is nice and didn't say anything derogatory, but I suspect that declining medical testing but still insisting that I have the disease is considered to be a sign that I'm being an irrational hypochondriac.

It's disheartening that every doctor I've encountered thus far over the past four years has totally dropped the ball on recognizing my illness, including the students from a nearby dental college who fixed my celiac-decimated teeth. Dentists are supposedly the leading-edge of detecting the disease, but these dental students overlooked a textbook case of celiac disease's toll on the teeth, with huge missing chunks of enamel that appeared overnight, including a new one that blatantly appeared between the appointments to install veneers. They could tell from the condition of my teeth that I was a meticulous flosser and brusher, but they insisted that acid reflux (which I don't have) caused the enamel loss. Then how did more enamel manage to die off between appointments? Acid reflux would cause gradual tooth erosion, not abrupt.

Whatever. I'm so over this crap at this point. I'm never trying to convince another doctor. This has been a frustrating multi-year ordeal that I wouldn't wish on my worst enemy.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

You are totally correct.  You must be on a gluten diet for all celiac testing including small intestinal biopsies.  

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

 

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
  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,194
    • Most Online (within 30 mins)
      10,442

    RitaRenee
    Newest Member
    RitaRenee
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
×
×
  • Create New...