Our family was completely caught off guard by our celiac diagnoses. We didn’t understand what celiac disease was. I’m a researcher by nature and thought I’d share what we have learned.
The questions we asked about celiac disease (and the answers we found):
- What is celiac disease? (What are the categories of celiac disease? How does celiac disease develop?)
- What are the symptoms of celiac disease? (What are the long term health effects of celiac disease if a gluten-free diet is not followed? What are the dangers of undiagnosed celiac disease? How do the various symptoms & conditions respond to a gluten-free diet?)
- How are celiac disease, gluten sensitivity, and a wheat allergy different?
- What tests can be run to diagnose celiac disease? (What tests might be run to identify problems caused/influenced by celiac disease? What future testing options are being researched? Can some test results be negative and a person still have celiac disease?)
- What is potential celiac?
- What is refractory celiac disease?
- What is cross-contamination and why does it need to be avoided?
- What is gluten? (What foods & other items are sources of gluten? What is a gluten challenge? Are there lists that help identify which brands are gluten-free?)
- What happens to a celiac when he/she ingests gluten while on a gluten-free diet? (Why does it often seem like small and large doses of gluten cause the same type and severity of symptoms?)
Other celiac connections we’ve studied on our quest for answers:
- Interleukin-15-Dependent T-Cell-like Innate Intraepithelial Lymphocytes Develop in the Intestine and Transform into Lymphomas in Celiac Disease [This article is interesting to me because my father passed away from a cancer that could have connected to celiac disease.]
- The association of keratoconus and immune disorders [another genetic disease in our family – I’m curious if my son’s keratoconus was such an unusally extreme case because he also had celiac disease.]
- Idiopathic atrophic glossitis as the only clinical sign for celiac disease diagnosis: a case report. “… this paper has demonstrated that the dentist must always work to discover the cause of tongue affection and that this goal can be achieved by working together with other specialists . In particular, it has been shown how starting from an AG, the dentist in collaboration with the gastroenterologist, can have a fundamental role in CD diagnosis.” [Also called “geographic tongue”]
- Atrophic Glossitis Leading to the Diagnosis of Celiac Disease (N Engl J Med 2007; 356:2547, June 14, 2007, DOI: 10.1056/NEJMc070200.) “Robust evidence in support of routine screening for celiac disease in patients with atrophic lesions of the tongue is lacking. Nevertheless, the National Institutes of Health consensus statement on celiac disease states that “the single most important step in diagnosing celiac disease is to first consider the disorder by recognizing its myriad clinical features.”4 Our report should alert physicians and dental practitioners to consider celiac disease in managing cases of idiopathic atrophic glossitis.”
- Large forehead: a novel sign of undiagnosed coeliac disease.
- Craniofacial features of children with celiac disease.