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Some Inconsistencies In What Dr.s Are Saying

itsallgood

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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?

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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