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

Dr. Was Wrong! And So Was Lab Which Produced The Results....


JulieMamato5

Recommended Posts

JulieMamato5 Newbie

I am sure I have you all interested in this topic now. http://www.glutenfreeforum.com/style_emoti...fault/smile.gif A few weeks ago, after a year of gut pain and some of the common celiac symptoms, and after various other tests came back negative, I took my daughter for a celiac blood panel. This was at the urging of a dear friend who has celiac. The office called me and told me the results were negative.

My friend told me "no, you ask for a copy of the test." I did. Under the TIGA test (which was 7.9 for my dd) it said "under 4.0...negative, 4.0-10.0......weak positive, over 10.0....positive" And across the page, in the same row, it said, "normal range 0-19"

And I thought, "THAT MAKES NO SENSE!!"

So I called the lab in CA. They told me that the "normal range 0-19" should NOT be on that page.

I called our dr (who I really like BTW) and he said he would look into it.....

This evening, our dr called me and told me, "Kudos to you. The hospital put that 0-19 on every test for celiac they do, and it is wrong!!!" Of course what about all those other people who were given wrong information about their tests?

Also, the day after the blood test was taken, I took our 10yo dd off gluten and she had not had a cramp since!!

What do you think of that??

So, we have 5 children...do we get they all tested??? I have one 6yo who is really hyper and can't sit still......makes me wonder!

Julie


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



Celiac.com Sponsor (A8-M):



Osprey101 Newbie
So, we have 5 children...do we get they all tested??? I have one 6yo who is really hyper and can't sit still......makes me wonder!

Julie

Good for you on the labs. Maybe they changed tests and forgot to change the reference ranges- but that never should have happened.

As a practical matter (one which will help keep YOU sane!), try ditching the gluten and see how the entire family responds. It will be easier to prepare meals, there will be less concern with respect to kitchen hygiene, and there's one big problem about testing that lots of doctors seem to forget when it comes to celiac: they should treat the patient, not the labs.

Negative antibody test, negative biopsy- none of it matters if the patient improves in the absence of wheat gluten! If wg is reintroduced into the diet (accidentally or intentionally) and the symptoms recur, then the problem is wheat or wheat gluten.

mftnchn Explorer

Yes, just remembering wheat is not the only source of gluten.

happygirl Collaborator

Thanks for sharing!!!

What was the name of the lab that had it written incorrectly?

JulieMamato5 Newbie
Thanks for sharing!!!

What was the name of the lab that had it written incorrectly?

The lab that printed the reults was our local hospital lab. The lab listed on the results as "test preformed by" was Speciality Labs in Valencia, CA. I called CA, and they had the test results for our dd with the correct numbers. It was a mistake of our local hospital which printed the report.

I have a friend who is a dr and he personally knows the head of the lab and he is going to make sure EVERYONE who was given false information is given the correct info. Who knows how long this has been going on??

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,100
    • Most Online (within 30 mins)
      7,748

    David mucciariello
    Newest Member
    David mucciariello
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Yvonne Ayers Albers
      I have Celiac, and I just found out that HCTZ has gluten in it, and also makes you severely constipated versus diarrrhea!!  I need another medicene for blood pressure that is certified gluten free, without the 20 ppm, and doesn't cause constipation, please!!
    • sillyac58
      Thanks Wheatwacked. My D is normal. I take B12, B6, and a bone health supplement (I'm 67) that has K1, Calcium, Magnesium, and a bunch of other things. But no thiamine. But I will have my doc add it to my next blood draw. Thanks for the info WW!  
    • trents
      @jeffpine, please realize that GliadinX is not designed to allow you to eat large amounts of gluten without celiac repercussions. It is designed to counteract cross contamination situations where you might be exposed to small amounts of gluten accidentally such as you might get in a restaurant when you order something that should be gluten free but it is cooked on the same grill with stuff that has wheat. Also remember that the absence of noticeable uncomfortable reactions doesn't necessarily equate to no damage happening to the small bowel lining.
    • trents
      Welcome to the forum, @Dema! The current recommendations for the "gluten challenge" leading up to the day of testing are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) daily for at least two weeks. I hope this helps you in your decision. This information represents more recently updated guidelines but you will find older info giving more relaxed guidelines that were found to be not reliable.
    • Dema
      Hi everyone :). I think I have a high likelihood of having celiac and will please Gd have a blood test in 2 days time confirming this. over the past two weeks I’ve been on and off (to max 5 days) gluten to cope with my symptoms however now I can see online that I’m supposed to be having 2 servings of gluten every day for 6 weeks, which isn’t even my normal diet.  should I reschedule my blood test. I would really love for it to be diagnosed soon. Would appreciate any advice! thanks!
×
×
  • Create New...