Can you tell how long a person has had celiac disease?

1
Katarina Mollo MEd, RDN, LDN
My 17-year-old daughter was just diagnosed with celiac disease. It was the unexpected result of a panel she had done and we were shocked as there is no known celiac history in our family. She’s pretty asymptomatic. Is there a way to know how long she has had celiac disease? We as a family can get tested now but just wondering if there is a way to know how long she has been sick?

Answer


There is no way of knowing exactly how long someone has had celiac disease. Sometimes it takes several years from onset to the correct diagnosis. It is estimated that there is about a six to ten-year delay to diagnose celiac disease (1). A major factor is that there are so many symptoms of celiac disease (over 200) and some people have no symptoms at all, making it hard to diagnose. If people do not present with “classic” symptoms such as gastrointestinal symptoms, celiac disease is unfortunately often overlooked. Many people are also misdiagnosed with other conditions along the way.

In some cases, with children, you can notice a change on the growth chart, such as a sudden drop in growth, and that can be an indicator of the onset. Some people have also been able to tie the sudden onset of celiac disease after having another illness or major event in their life such as pregnancy.

To develop celiac disease, you need three things:

  1. A genetic predisposition
  2. Exposure to gluten
  3. A physical or environmental trigger (unknown)

The gene for celiac disease can be activated at any time during the lifespan, but we do not yet know what triggers it, making it is very hard to pinpoint the exact onset of the disease.

Common symptoms of celiac disease:

Gastrointestinal

  • Diarrhea
  • Fatty stools
  • Constipation
  • Cramps
  • Bloating
  • Flatulence
  • Lactose intolerance
  • Acid reflux
  • Nausea
  • Vomiting

Malabsorption- related

  • Anemia-Iron deficiency
  • Vitamin deficiencies
  • Calcium malabsorption leading to osteopenia, osteoporosis
  • Protein and calorie malnutrition
  • Weight loss or muscle atrophy
  • Poor growth in children
  • Failure to thrive

Non-Gastrointestinal

  • Fatigue
  • Depression
  • Joint pain
  • Muscle aches, cramps
  • Peripheral neuropathies
  • Infertility
  • Menstrual irregularities
  • Dental abnormalities
  • Brain Fog

You can read more about symptoms in our Celiac Facts Brochure.

Reference:

  1. Celiac Disease Foundation (CDF). 20 things you might not know about celiac disease. CDF Website:

https://celiac.org/about-the-foundation/featured-news/2016/08/20-things-you-might-not-know-about-celiac-disease/#:~:text=There%20is%20an%20average%20delay,miscarriage%2C%20epilepsy%2C%20and%20more.

Published March 6, 2023.

Note: This information is provided by NCA and Katarina Mollo MEd, RDN, LDN, NCA's Director of Education. This information is meant for educational purposes only and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. No liability is assumed by the NCA or Katarina Mollo, MEd, RDN, LDN by providing this information.

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