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Gluten-Free Dietary Compliance and Psychosocial Challenges in Indian Children with Celiac Disease


Celiac.com 07/20/2010 - Anyone who's tried to maintain a gluten-free diet for celiac disease or other reasons can likely tell stories about the difficulties and challenges they face on a regular basis. Still, very little research has been done regarding the psychological and social challenges faced by people with celiac disease who are attempting to follow a gluten-free diet.

Scientists in India recently conducted just such a study. A research team set out to assess psychological and social challenges faced by Indian children with celiac disease who are attempting to follow a gluten-free diet. The research team included Srikanta Basu, J. C. Chauhan, A. K. Dutta, Praveen Kumar, and Arun Kumar from the Division of Gastroenterology, Department of Pediatrics at Lady Hardinge Medical College and Associated Kalawati Saran Children Hospital in New Delhi, India.

Their goal was to assess dietary compliance to gluten-free diet, to identify barriers to compliance, and to study the impact of diet on the psychosocial behavior of children with celiac disease.

For the study, the team looked at children with clinically proven celiac disease, who had been observed for at least 6 months. They then evaluated the children for gluten-free diet compliance.

Researchers who were blinded to initial results then interviewed patients using a self-administered questionnaire. The team measured psychosocial parameters using the standard 35-item Pediatric Symptom Checklist (PSC).

To determine what factors might affect dietary compliance, the team compared the results of children who were compliant with their gluten-free diets to those who were not-compliant. They then compared the psychosocial parameters of both groups to those of healthy control subjects.

The team measured a total of 70 patients for dietary compliance. They found 53 children to be compliant with a gluten-free diet (75%). They found 13 were non-compliant with a gluten-free diet (18%), while 4 children were likely non-compliant.

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A total of 64 children completed the full assessment. Final analysis showed that 4 of those children were likely non-compliant. Data for 2 patients with incomplete assessments was dropped.

Younger kids showed higher compliance with a gluten-free diet than did teens. 80% of younger kids showed compliance with a gluten-free diet, compared with just 44% of teens. Gluten-free diet compliance was also higher in children with higher maternal education, and in parents with better knowledge and understanding of celiac disease, and in nuclear families. Higher family income raised compliance levels.

Children with 2 or fewer siblings did better, with compliance rates of 68.3% and just 23% non-compliance. 72% of kids who were compliant with a gluten-free diet had presented classic symptoms of celiac disease, while only 15% of this group was non-compliant.

Adjustment-related challenges, such as difficulty in maintaining diet at school, restaurants, trips, etc. are among the most common problems faced by celiac children. Nearly half (45%) of the children complained that teachers did not adequately understand the challenges of their condition. Researchers established a PSC cutoff point of 4 for children in the dietary non-compliant group.

Generally, kids with celiac disease did not show higher levels of symptoms, such as complaints of aches and pains; being irritable/angry; not listening to rules, blaming other for mistakes; teasing others; refusing to share.

The study findings show that about 1 in 5 (18%) people with celiac disease fail to comply with their gluten free diet, and that kids who comply with a gluten-free diet have better psychosocial parameters, as measured by PSC score. Also, adolescents, kids in joint families, and kids in larger families tend to have greater non-compliance levels.

Successful treatment of celiac disease requires full compliance with a gluten-free diet. Non-compliance increases risk factors for numerous celiac-associated conditions. Knowing which factors are most likely to present challenges for maintaining compliance can provide celiac suffers and clinicians with useful tools for reducing those challenges and increasing compliance.

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Vegetarian here too, celiac really makes it tough as all the Quorn meat replacement products bar the odd one or two are out Then there's all the scare sites saying only paleo type diets will repair your insides but guess what they're all heavily meat / fish based. @Ennis_TX has some good ideas for meals

Wow guys just read all the replies Thankyou all so much!!! There are so many things you've all said that has triggered a light bulb in my little head! The glasses may not be clean!! I will put this to a test. One night I'll stick to bottles of cider (double checked are gluten-free) another I'll try the Gin or William chase vodka if I can find it! And see the effects. if I loose many days due to these not working I'll see a practitioner and see what the deal is! Before I was diagnosed at Coeliac... I went to a herbalist who did a test and said corn is funny on my body!!! But then 18months later (when I became incontinant and lost a lot of weight) my bloods came back positive (after begging the docs and telling them it wasn't IBS) i don't tend to snack at bars on food but I must admit I never thought it could be the way it's served!! The humour and information has made me feel so much better thanks all xxx

Hey Matt thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous! The fatigue is something I imagine every coeliac suffers with! I have to nap a lot. Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely) when I drink at home I'm fine!!! I wonder if it's cross contamination from the bar or the level of alcohol?! I also had a jger bomb shot on Friday (looked it up and a lot of people say it's gluten-free) it's a hard live but someone's got to do it!! Thanks for the reply! When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap? Kind regards steph

Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc. After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe. Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?. The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try: http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt

Similarly, I've been vegetarian for 25+ years. A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did. I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.