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Factors Affecting Health-Related Quality of Life Issues for Adults with Celiac Disease

Celiac.com 05/08/2007 - For people with celiac disease, accurate and comprehensive information on maintaining a healthy, high-level quality of life can be difficult to find. Research is particularly sketchy with respect to factors that have a negative impact on health and quality of life for adults with celiac disease.

Factors that have a negative impact on health and quality of life are often modifiable through changes in diet, or adjustments in treatment. Thus researchers are motivated to identify which celiac patient groups are at risk of being impacted in a negative way, and to determine which adjustments might bring positive results.

In an effort to refine treatment approaches and improve the lives of patients with celiac disease, clinical researchers in Gastroenterology have become increasingly interested in health-related quality of life issues as primary or secondary endpoints in their studies.

A recent study published online in Medscape Today suggests that, in addition to physical and mental co-morbidities, a failure to sustain a gluten-free diet and disappointment with doctor-patient communication are also important factors associated with health-related quality of life concerns in people with celiac disease.

Motivated by inconsistencies in available data, a team of German researchers made up of Drs. W. Häuser, A. Stallmach, W. F. Caspary, and J. Stein, set out to evaluate the various predictors for reduced health-related quality of life in adult patients with celiac disease.

Using logistic regression analysis, the researchers catalogued responses to medical and socio-demographic questionnaires by 1000 adult celiac disease patients who were members of the German Coeliac Society.

The subjects responded to the following three survey questionnaires, which were administered by post:
1) the Short-Form Health Survey (SF-36); 2) the Celiac Disease Questionnaire; 3) the Hospital Anxiety and Depression Scale.

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The results showed that physical co-morbidities (ß = -0.41; OR = 0.66, P < 0.001) and mental disorder (ß = 0.88; OR = 2.4, P = 0.03) were associated with a reduced physical summary score of the SF-36 Scale.

Mental disorder (ß = 2.5; OR = 11.9, P < 0.001), physical co-morbidities (ß = -0.26; OR = 0.77, P = 0.004) and younger age at diagnosis (ß = -0.10; OR = 0.91, P = 0.05) predicted a reduced mental summary score of the SF-36 Scale.

Mental disorder (ß = 0.90; OR = 2.5, P = 0.03), non-compliance with gluten-free diet (ß = 0.44; OR = 1.6, P = 0.009), active medical co-morbidities (ß = -0.28; OR = 0.76, P = 0.007) and dissatisfaction with doctor–patient communication (ß = 0.55; OR = 1.7, P = 0.03) were associated with reduced Celiac Disease Questionnaire scores.

In adult patients with celiac disease, the following factors were associated with reduced health-related quality of life: female gender, younger age at diagnosis, newly diagnosed patients, latency of diagnosis, failure to follow a gluten-free diet, anxiety and somatic and psychiatric co-morbidity.

Until this study, attempts to measure health status in patients with celiac disease relied on generic health-related quality of life methods, rather than validated, disease specific instruments, and thus the relative predictive value of these variables had not been fully assessed.

Aliment Pharmacol Ther. 2007;25(5):569-578.

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1 Response:

 
Dorothy
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
31 Oct 2007 5:56:05 PM PDT
I need to do more studying on this to really get an understanding of the terms used in this article.




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I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha

Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body. Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free