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
itsallgood
Posted

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.

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    2. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

      This article is a few of years old, but my still be helpful.
    5. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      14

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      This is likely dependent on the sensitivity of the individual celiac.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      Trip to Anaheim/Disney

      By Scott Adams · Posted

      This article is a few of years old, but my still be helpful.  
    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
×
×
  • 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.