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Gluten-free Diet and Quality of Life in Patients with Screen-detected Celiac Disease

The following Medline abstract describes a unique study that was done on the quality of life of two groups of people with celiac disease: One that was diagnosed as the result of having symptoms, and the other which had little or no symptoms and whose diagnosis was reached via screen-detection. Both groups were treated for one year with a gluten-free diet, and were then studied to determine their overall response, including their psychological response. Here is the abstract:

Eff Clin Pract 2002 May-Jun;5(3):105-13
Mustalahti K, Lohiniemi S, Collin P, Vuolteenaho N, Laippala P, Maki M.
Department of Pediatrics, Tampere University Hospital, Finland.

CONTEXT: Since the advent of serologic testing for celiac disease, most persons who receive a diagnosis of celiac disease have few or no symptoms. Although pathologic changes of celiac disease resolve on a gluten-free diet, how a gluten-free diet affects the quality of life for patients with screen-detected celiac disease is unclear.

OBJECTIVE: To evaluate the effect of a gluten-free diet on the quality of life of patients with screen-detected celiac disease.

DESIGN: Prospective study of patients before and 1 year after initiating a gluten-free diet.

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PARTICIPANTS: 19 patients with screen-detected celiac disease (found by serologically testing first-degree relatives of celiac patients) and 21 consecutive patients with symptom-detected disease. In all cases, celiac diagnosis was confirmed by finding villous atrophy and crypt hyperplasia on small-bowel biopsy.

INTERVENTION: Gluten-free diet (explained during a single physician visit). MAIN OUTCOME

MEASURES: Gastrointestinal Symptoms Rating Scale (GSRS), in which scores range from 0 to 6 (higher scores represent worse symptoms); and quality of life measured with the Psychological General Well-Being Questionnaire (PGWB). Scores range from 22 to 132 (higher scores mean greater well-being).

RESULTS: At baseline, patients with symptom-detected celiac disease had poorer quality of life and more gastrointestinal symptoms than those with screen-detected celiac disease. Reported compliance with the gluten-free diet was good. All mucosal lesions of the small bowel had resolved at the follow-up biopsy. After 1 year of following the diet, quality of life for patients with screen-detected disease significantly improved (mean PGWB score increased from 108 to 114; P <0.01). A similar increase was noted in patients with symptom-detected disease (mean PGWB score increased from 92 to 103; P <0.01). Gastrointestinal symptoms also improved in patients with screen-detected disease and in patients with symptom-detected disease (mean GSRS scores decreased from 1.8 to 1.4 and from 2.6 to 1.9, respectively; P <0.01 for both comparisons).

CONCLUSIONS: Gluten-free diet was associated with improved quality of life for patients with symptom-detected celiac disease and patients with screen-detected celiac disease. Concerns about the burden of a gluten-free diet, at least over the short term, may be unfounded.

PMID: 12088289

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@cyclinglady thanks for checking in Restricted diet didn't do much. Still had some VA last time they checked. Heath still otherwise fine, so RCD remains unlikely. My sxs kick in lockstep with life stress, so that kind of points to some general IBS stuff on top of celiac disease. Very doubtful I'm getting any gluten in, but fingers crossed my system is just a little hyper-vigilant, as I ponder on this thread.

I have always noticed that the table wine in Europe is pretty damn good! I am a wine lover and so is my husband but he does like his Green's beer.

The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most. Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten. Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit.

I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.

Hi VB Thats sounds like a good plan. Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval. Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway. We may not be able to say which but the good news is all of your symptoms: were also mine and they all resolved with the gluten free diet. So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers. Best of luck!