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

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.

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

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

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

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,119
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.