So you go into the doctor’s office for your appointment and the doctor or nurse asks what kind of symptoms are you having.  They might also ask about your family history, or any other health problems you might have.  Not uncommon right?  An extensive Swedish Study published Monday in Pediatrics now says maybe testing for celiac, based on symptoms alone, is not as productive as we thought.

Celiac Symptoms for Diagnosis

In the study, researchers had more than 7,000 12-year-olds in Sweden fill out a questionnaire which asked if they have had these symptoms:  tiredness, poor appetite, nausea, stomach ache, upset stomach, abdominal gas, bloating, hard stools, loose stools, and lactose intolerance.  Response options were never, seldom, sometimes, often and always over the past 6 months.

Then  7,208 participants received the blood test for celiac disease.  153 (or 2.1%) had celiac disease confirmed through blood screening and subsequent biopsy.  Then they compared the questionnaire answers of the positive celiac kids with the children who didn’t test positive for celiac. What they found is, well, to be frank…everyone gets a stomach ache once in a while and a health practitioner may not easily tell if they should test for celiac based on the symptoms a patient is telling them. (<–my bottom line deduction).

In the study’s language, “the presence of a symptom or symptom(s) did not significantly increase the odds of having undiagnosed celiac disease.” The questionnaire’s answers about symptoms between the celiacs and non-celiacs were roughly the same.

Interestingly, the study says when they followed up with the celiac-diagnosed children at a later date, the kids said in retrospect, there were some symptoms they weren’t aware of until they went gluten free and started feeling better.

Other Ways of Diagnosing Celiac

What if you have type 1 diabetes or down syndrome?  In general, people with these conditions have a higher probability of also having celiac disease. But that also “revealed poor diagnostic performance” in this study.

The report concedes mass screening for celiac disease as a public health intervention is also controversial.

In a corresponding paper by Susan S. Baker,  MD, PhD, of the Digestive Diseases and Nutrition Center, Department of Pediatrics, University at Buffalo, in Buffalo, New York, she describes the study as “carefully designed and executed”.  She also says it raises many questions on the process of finding celiac disease in our children:

“If symptoms cannot be used to identify candidates for screening what can be used?”
“With the relatively high prevalence, should all children be screened?”
“Is it ever justifiable to place a child with gastrointestinal symptoms on a gluten-free diet without clearly making a diagnosis of CD?”

“Importantly,” Baker says, “they raise concern for the guideline that recommends a gluten-free diet be initiated without a biopsy when ‘signs or symptoms suggestive of CD and high anti-Tg2 titers wtih levels >10 ULN’ are present.”  The concept of a celiac diagnosis without getting a biopsy, has some legs.  It was discussed at the International Celiac Disease Symposium last fall as an option for kids if their blood tests positive, they have symptoms and they have the HLA DQ2/8 gene.  This concept was highlighted in a 2011 post entitled “Research:  Biopsy may not be Necessary for some Celiac Kids” on this website.

Baker also felt it was worth noting that non-celiac gluten sensitivity is not addressed in this study.

While this study leaves us with many unanswered questions, but it may leave doctors with many MORE hard questions — what do we do to improve diagnosing celiac in kids?  The answer remains to be seen at this time.

*Disclaimer: I am not a medical professional.  If you have questions regarding this study or testing for your child, please see your healthcare practitioner.



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2 Responses to “Celiac Screening Guidelines for Kids Questioned in Study”

  1. I did enjoy this article. I like how it mentions the correlation between Type 1 Diabetics and Celiac Disease. My daughter was 5 when she was diagnosed with Juvenile Diabetes. We started immediately going to the Joslin Diabetes Center in Syracuse, NY, near our residence. She had always complained of a stomachache, she never wanted to play, just sit around, and always had a distended stomach. Myself being a nurse, and mom, just made excuses for the stomachache, and thought that the distended belly was just her design. When one day the Nurse Practitioner we saw at the Joslin Center went over the results of what she called “their (meaning the Joslin Center) routine blood work for new Juvenile Diabetics. All the result were what I expected, they were out of range but I knew with Insulin now things would change….One result, which I had NO IDEA was part of their routine blood work was for Celiac Disease. Apparently it was 5 different blood tests and were drastically out of range. The Nurse Practitioner explained to me that there was a correlation between Type 1 Diabetes and Celiac Disease, so much so that they added it to their blood panel. My daughter had the biopsy and her Villa in the small intestine were flat. I could not believe it! she is now 16 and has been doing pretty good on the diet, for a 16 year old! I myself was diagnosed through the same means, meaning blood work and biopsy about 6 years ago, I am not diabetic but I do have Lupus, another Autoimmune disease. So my question is….does the correlation lay with Autoimmune Disorders? Or specific ones?

  2. Tammy, thanks for the comment.
    Specifically the study said it asked in the questionnaire about “associated disorders” “anemia, type 1 diabetes, thyroid disease, rheumatic disease, inflammatory bowel disease, dermatitis herpetiformus, vitiligo, alopecia areata, trisomy 21 and Turner Syndrome.. as well as the presence of Celiac among the child’s first degree relatives.”
    It did not say all autoimmmune disorders, nor did the study explain why only these ailments were in the questionnaire and not all autoimmune disorders.
    Thanks again and I am glad your daughter and you are feeling better!

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