Table 4

Categories reflecting experiences of living with celiac disease

Quotations

(Original text)

Feelings and attitudes

(Subcategories)

Related actions

(Subcategories)

Experiences

(Categories)


"When I found out that I have gluten intolerance, there wasn't anything to it. Of course you want to be able to eat what you want, but if you can't then you just can't."

Girl, Narrative

Not a disease, just food intolerance

Not the worst condition to have

Not being the only one

Accept the fact

Make the best out of it

Not a big deal


"It should be out in the national newspaper, like one day they should have a bunch about gluten. So people understand."

Boy, Focus group discussion

Wish for increased awareness

Dislike to be treated differently

Want to be seen as normal

Mobilize for change

Educate others

A fight for normalization


"My life became very different. They always have to make special food for me and I am scared that people think that I am being difficult."

Girl, Narrative

Feel alone

Worry to be seen as a burden

Feel like an outsider

Trying to hide

Compensate by being nice

A lonely struggle


"I have totally quit the gluten-free food. My stomach problems have come back, but I feel better mentally. I can live a normal life now, except I have a little stomach pain."

Girl, Narrative

Hard to be different

Diet hard to handle

Not worth it

Withdrawals from social contacts

Take an active stand not to adhere

Treatment not worth the price


Quotations related to experiences of living with a screening-detected celiac disease diagnosis, illustrating the grounding of theoretically constructed subcategories reflecting feelings and attitudes, and related actions, which finally are grouped into categories reflecting experiences of living with celiac disease.

Rosén et al. BMC Pediatrics 2011 11:32   doi:10.1186/1471-2431-11-32

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