22951 Health-Related Quality of Life in Celiac Children on Gluten-Free Diet - Celiac.com
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Health-Related Quality of Life in Celiac Children on Gluten-Free Diet

There have been several studies of celiac disease sufferers and health-related quality of life (HRQoL), but few of these studies have focused on children. Since diseases that develop through childhood (as celiac disease often does) usually negatively impact physical, social and psychological development, it is important to determine the extent to which celiac children suffer as a result of the disease.

Photo: CC - Cuito CuanavaleIn the present study, 160 celiac children (55 males and 105 females) were given questionnaires to assess mental health, social health and physical health over the four weeks prior to when the test was taken. Children were divided into three age groups: 8-11 years, 12-15 years and 16-18 years. Parents were given a proxy version of the questionnaire to assess their children. Questions came from the short version of the DISABKIDS questionnaire (a well-validated research method used for different chronic disease diagnostic groups). Age and severity of disease at onset were examined to determine if these factors influenced self-valuation later in life.

Children rated their HRQoL surprisingly high, with a median score of 92/100 (85 points for mental health, 95 for social health and 100 for physical health). Sex and age did not show any significant correlation, though years since diagnosis showed slight correlation (children rated themselves higher the longer it had been since disease onset). Children who were younger at diagnosis also rated themselves higher, which is likely because young children have not grown accustomed to gluten-containing foods, and thus miss them less. It is also likely that children closer to adolescent age have a harder time accepting their 'otherness' due to their psychological development.

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Children with more severe symptoms at onset rated their HRQoL higher than children who had more mild symptoms, or were asymptomatic at onset. This is likely because more symptomatic children are able to perceive more of a dramatic change in their overall health after starting on gluten-free diet. They feel relatively better, so they rate themselves higher.

Parents tended to rate their children's HRQoL lower than then the children themselves did. This underestimation is probably a result of parental worrying, guilt and/or sense of responsibility. Parents whose children were younger at onset of disease, or had lived with the disease longer tended to judge their children's HRQoL more accurately.

This study suggests that children adapt well to celiac disease, and that parents tend to overestimate the negative impact the disease has on their children. At risk of overtreatment of the psychological, social and physical impacts of the disease, it is important that parents of celiac children let their children be heard about their perceived quality of life.

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5 Responses:

 
Anna
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said this on
20 Jun 2012 11:58:12 PM PDT
Celiac disease is a chronic failure so children know how to handle the situation. Therefore parents must let their children face the problem themselves instead of underestimating them.

 
Mom
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said this on
25 Jun 2012 5:14:17 AM PDT
Not to worry!

 
Brandon
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said this on
25 Jun 2012 7:38:14 PM PDT
I have two boys that have celiac disease. One also has diabetes type 1 and ulcerative colitis. Both found out that they had celiac disease in their teens. It has greatly impacted them, as both have negative thoughts about food. They often prefer not to eat food at all rather than eat gluten-free food because of its taste and texture. One just eats food with gluten in it anyway, stating he 'doesn't care'. I find your article and other such statements that children just get over it annoying. Have you ever though perhaps the children didn't know to do the surveys correctly or didn't want to be too negative?

 
said this on
26 Jun 2012 10:31:09 AM PDT
The article was not written to suggest that children should just "get over it", but rather to report findings that they are often more capable of dealing with celiac disease than their parents expect/perceive.

As for error: as with any self-report study, there is always that possibility, but keep in mind that the children's scores were averaged to produce the net findings of the study. It is highly unlikely that a majority of the children were confused or felt the need to respond a certain way. The DISABKIDS questionnaire has also proven itself as a reliable research method specifically for children with health concerns, so it is unlikely that it was too difficult or confusing for them.

In your sons' cases, their situation actually fits the study's findings well: they found out in their teens, which is when children seem have the most trouble dealing with it.

 
Ada
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said this on
27 Jun 2012 12:53:56 AM PDT
Interesting




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You may find these interesting, they're from Professor Marios Hadjivassiliou, a leading expert on gluten ataxia: http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf Best of luck helping your daughter

Yep. The one that is most relevant I think is the post by Backtalk. Backtalk went back on gluten and have to a colostomy done on an emergency basis. Not fun. She regretted ignoring the gluten-free diet.

Welcome Lochella Hopefully you can draw some comfort from finally having an answer and thus starting the path to good health. Healing is going to come from your own body as you progress on the gluten free diet and it stops fighting itself and starts repairing that damage. You're still in the very early days and it's not an instant process sadly. 6 months is the usual figure bandied around for seeing significant improvement, although hopefully you'll get some signs of improvement much quicker than that. The single best thing you can do is to eat good simple whole foods and make sure absolutely no gluten gets into your diet. There's some tips here: With stomach pains peppermint tea is my go to drink. Avoiding caffeine seems to help as well as its rough on digestion at the best of times. This may be a time to ease up on alcohol as well and consider dropping dairy, many find they're lactose intolerant but this can correct itself in time. You will find lots of good info, advice and support here, I hope the community is of help to you as it was to me. Best of luck!

I recently got diagnosed with Celiac disease I must of had it my whole life. I'm 35 I've always had severe stomach problems, in and out of hospitals and misdiagnosed until now. My small intestine is severely damaged I'm now waiting to see a dietitian and my specialist wants to see me again in 2 weeks. How do some of you deal with the pain of the healing process and what helps you? I'm in so much pain?

I recently got diagnosed with Celiac disease I must of had it my whole life, in 35 I've always had severe stomach problems in and out of hospitals and misdiagnosed until now. My small intestine is severely damaged in now waiting to see a dietitian and my specialist wants to see me again in 2 weeks. How do some of you deal with the pain of the healing process and what helps you? I'm in so much pain?