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Health Quality Of Life


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HRQoL impaired in celiac patients despite GFD adherence

07 July 2006

Eur J Gastroenterol Hepatol 2006; 18: 747-754

Despite adherence to a gluten-free diet (GFD), the majority of German celiac disease patients still experience a significant number of general and extra-intestinal symptoms, and a reduced health-related quality of life (HRQoL), researchers say.

Although there is a high prevalence of celiac disease in Europe, only a small number of studies on HRQoL have been conducted using validated instruments with clinical samples, the scientists state.

To address this imbalance, the team questioned 446 patients with biopsy-proven celiac disease. The participants were aged an average of 46 years and 78% were female.

Questionnaire data indicated that 67% of individuals adhered to a GFD all the time and 26% adhered most of the time.

Furthermore, results demonstrated that after adherence to a GFD for a median period of 6 years, 98% of patients reported a reduction of initial symptoms, and 85% declared that they had experienced an increase in HRQoL. A median weight gain of 8 kg as a consequence of a GFD was recorded.

The most prevalent diseases suffered by the patients were osteoporosis (15%), oral aphtae (12%), and dermatitis herpetiformis (9%).

Interestingly, compared to a control sample of individuals from the German population, celiac patients showed significantly higher scores for anxiety, fatigue, dyspeptic and musculoskeletal pain on the Hospital Anxiety and Depression Scale.

Celiac disease sufferers also showed a reduced HRQoL in nine out of 10 scales of the Medical Outcomes Study Short-Form 36.

Winifred Häuser, from the Klinikum Saarbrücken in Germany, and colleagues conclude that "HRQoL, although improved after starting a GFD, is still reduced compared to that of the general population."

"Further research is necessary to identify risk factors of a reduced HRQoL in celiac patients in order to develop tailored therapeutic interventions."

The research was published in the European Journal of Gastroenterology & Hepatology.


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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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