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testing was negative. can this change?

kim5798

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kim5798 Newbie
kim5798
Posted

Asking this question for a friend.  Her child has type 1 diabetes, diagnosed 2 years ago. At that time, they did the celiac blood tests & they were negative. Her son has various stomach issues & she is wondering if they could be celiac related. The nurse at the endocrinologist told her, "the tests were negative 2 years ago, he doesn't need to be tested ever again." My own child has type 1 diabetes and celiac disease & this did not seem correct to me. Can't the celiac disease develop over time??  

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cyclinglady Grand Master
cyclinglady
Posted

Celiac disease can develop at anytime.  TD1 patients have a 10% chance of developing celiac disease.  This child should be retested.  My own kid gets tested every few years.  I would do it sooner if she had symptoms (and some celiacs are symptom free!)

Your friend should request a complete celiac panel and do it nicely in writing.  Doctors just hate malpractice lawsuits.  The other choice is to get a PED or PCP  to order the panel.  This ENDO is not celiac-savvy.  I would worry about anything he does.  My neighbor is an ER doc.  He can not know everything, but he uses Dr. Google, consults with peers and relies on his training.  

  • 2 weeks later...
kim5798 Newbie
kim5798
Posted
  • Author

This is what I told my friend. Thanks for the input.

HannahBick Explorer
HannahBick
Posted

Many people can have some of the signs and symptoms of celiac disease, but not have celiac disease at the time of testing and then if you wait long enough they get celiac disease later on.

frieze Community Regular
frieze
Posted
On 6/5/2018 at 12:13 AM, kim5798 said:

Asking this question for a friend.  Her child has type 1 diabetes, diagnosed 2 years ago. At that time, they did the celiac blood tests & they were negative. Her son has various stomach issues & she is wondering if they could be celiac related. The nurse at the endocrinologist told her, "the tests were negative 2 years ago, he doesn't need to be tested ever again." My own child has type 1 diabetes and celiac disease & this did not seem correct to me. Can't the celiac disease develop over time??  

find out if that person is a nurse, if he/she is, report them to the board for malpractice.  i DO NOT mess around.

kareng Grand Master
kareng
Posted

Of course that is ridiculous! That is like saying you had a mammogram 2 years ago that was negative - so you couldn't have cancer now.  Of course she then talked to the doctor and got her tested?  

The standard of care for children with type 1 is to Celiac test every 2 years with no symptoms.  And to test all siblings every 2 years, also.  

Palvyre Apprentice
Palvyre
Posted

I had symptoms from my early 20s on. I was tested in my late 20s due to symptoms consistent with Celiac and the test was negative. I was tested again at age 38 because I had gotten extremely ill, that time it was a very high positive. I had developed osteoporosis by that point though.

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    • trents
      Should I get a second opinion?

      By trents · Posted

      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
    • shell504
      Should I get a second opinion?

      By shell504 · Posted

      Hello. I apologize. I didn't know there wasn't a standard.  The standard listed  for the IGA is normal range 47-310.  The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected.  And the negative one the standard is negative.  It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 
    • trents
      Mistakenly eating gluten

      By trents · Posted

      It is also possible that since eating the fries you have been glutened again during the week. I would double check the food in your cupboard and reread the ingredient lists. Food companies can and do change their formulations from time to time such that something that used to be gluten free is no more. What I am saying is, don't assume the distress you are experiencing comes from one incident of glutening. There could, coincidentally, be another one on it's heels. 
    • trents
      Should I get a second opinion?

      By trents · Posted

      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
    • shell504
      Should I get a second opinion?

      By shell504 · Posted

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