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

Some Inconsistencies In What Dr.s Are Saying


itsallgood

Recommended Posts

itsallgood Rookie

BACKGROUND: Since my 15 yr. had infectious EBV (Epstein Barr) three years ago, he's really never been the same. PERPETUALLY NAUSEOUS, CRAPPY IMMUNE SYSTEM... He was diagnosed with type 1 diabetes a 1.5 years ago.

At our first appt. a few weeks ago, (with this dr.) he said that he had negative tests for Celiac from previous dr. but they arent always accurate (so didn't test again). In fact, he said the only "sure fire" way to know is how one responds to the diet. I went ahead and put him on gluten-free diet while waiting for the Vit. D tests (came up low) in the meantime, and within a few days he went from being gray, in bed, nauseous, sore, to his normal self again.

When he called with results, he said the Celiac test that was previously done was 95% accurate and Celiac can probably be ruled out. He put him on Vit. D supplements (50,000) and said that he'd like to test for "sprue". I thought that was the same thing? He also said his hemoglobin was a little high. Anyone have thoughts?

So now these are the tests he's ordered (they faxed me a copy and some of it's hand written...hard to read):

Quantitative immunoglobulin

tissue transglutaminase

endomysial auto-antibodies

fasting a.m. cortisol

lyme

ACTH stimulation test (thsi one says three hours/lavendar/SEP Freeze)...huh?

PPD

PTH

Renin/Aldost...??

DHEA-s

HIV--been done when he had EBV, (negative)

SPEP

B-12/Folate

Ferritin

He asked if I wanted him to order an endoscopy, but I really don't care about an official diagnosis of celiac if it means subjecting him to more.

In summary, are the things he said that I find inconcistent:

1. at the 1st appt. he said the "Celiac test" that the ped. did (only an IgG) wasn't always accurate

2. Few days later when he called for the "non-celiac" results he said the previous tests from ped. done for Celiac were "95% accurate" and that his improved health on the diet could be the "placebo effect". but, he reported a Vit. D def and hemoglobin was high (not terribly, but risen to 16.6 since last test which was 15)

3. He said the testing (to be done next week) shouldn't be influenced at all by the fact that he's already been gluten-free for 3 weeks. much of what I'm reading says different. If it meant having to put him back on gluten to find out, I won't do it...not worth it.

I dug up an old report from the original "celiac test" thsi is what it says:

tissue transglutiminase AB IGA .03 [0.0-3.9] U/mL

negative (less than) 4.0

equivocal 4.0-10.0

positive (greater than) 10

Comment: tTG antibody, especially Iga, is sensitive and specific for untreated Celiac Disease. levels can decrease significantly in response to a gluten free diet. The IgG assay is used mainly to detect celiac patients who are IgA deficient."

What does this mean?


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,372
    • Most Online (within 30 mins)
      7,748

    cianb4121
    Newest Member
    cianb4121
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
×
×
  • 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.