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A Simple, Reliable Way to Score Gluten-Free Compliance in Patients with Celiac Disease

Celiac.com 10/13/2009 - The standard method of measuring successful observance of a gluten-free diet in patients with celiac disease is through a dietary interview performed by health professional. However, there is currently have no simple, objective method for conducting such a dietary interview.

To address this discrepancy, a team of researchers recently designed an easy, quick questionnaire based on four simple questions which yield a five-level score (0–IV). The score provides the test individual with an indication of their compliance level.

The research team was made up of Federico Biagi, Alida Andrealli, Paola Ilaria Bianchi, Alessandra Marchese, Catherine Klersy, and Gino Roberto Corazza.

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The team recently set out to assess the accuracy of the questionnaire. They ran the questions past 168 celiac patients, 126 females and 42 males, with a median age of 42·4 (SD 12·9) years. All subjects were allegedly following a gluten-free diet (median 82, 25th–75th percentile 50–108, range 15–389 months).

They compared the resulting scores with the persistence of both villous atrophy and endomysial antibodies while on a gluten-free diet.  They also compared patient survival rates. Non-expert personnel interviewed patients by telephone.

The questionnaire took less than one minute to complete. The lowest results were markedly more common among the patients with a persistence of both villous atrophy and positive endomysial antibodies. Those patients also had significantly higher rates of death overall.

From these results, the researchers conclude that the questionnaire offers a simple, accurate way to verify compliance with a gluten-free diet for patients with celiac disease.

Source:
British Journal of Nutrition (2009), 102, 882–887

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4 Responses:

 
Hallie
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
13 Oct 2009 10:08:27 PM PDT
Oh not fair! Surely if the questionnaire only consisted of 4 questions, you could tell us what they were. Neither does the abstract of the study tell us! Sorry, but this in not up to your usual fine standards of reporting!

 
Michelle
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
16 Oct 2010 10:41:31 AM PDT
The article was very informative and did include the four questions. Hallie, click on the "Source" link at the bottom of the page. This takes you to the abstract. Click on "View PDF" and you have the whole article.

Thank you Celiac.Com for sharing this article. I am writing my dissertation on celiac disease and this information was invaluable!

 
Janelle
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said this on
14 Oct 2009 5:09:20 AM PDT
So what is the question? This left me hanging.

 
ellie
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said this on
25 Aug 2010 6:02:07 AM PDT
I need those 4 questions. How does one get them. I think I am a great detective but this one haunts me. Especially when counseling the teen and young adult.




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KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust. By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,

I was at a used book sale yesterday and happened to see an old dermatological textbook. Of course the first thing I looked up was dh just to see what it had to say. What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line. The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember. Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back. Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this. That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.

Feeneyja, This will be a little long but I will try to be brief as possible. See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting. Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.) According to mdguidelines website http://www.mdguidelines.com/pellagra indicates that quoting ?The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.? And why I believe in many cases Pellagra goes undiagnosed today. Because doctor's have forgotten how it presents. A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself. Here is the link https://www.hindawi.com/journals/cggr/2012/302875/ and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient. "Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer?s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD. The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." It is me again. You can see the neurological symptom's of Pellagra are severe and wide ranging. Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it. I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it. Shoot it isn't just Niacin. All B-Vitamin's help your stress levels. IF you have stress B-Vitamins can help your stress levels. I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range. A article on celac.com discussed this topic in detail a few months ago. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I hope it is helpful. Good luck on your continued journey. If you have never heard of Pellagra you are not alone. Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions. https://pellagradisease.wordpress.com/ Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.) The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's. When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's. But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it. Or at least research it some more. Again good luck on your continued journey. 2 Timothy 2: 7 ?Consider what I say; and the Lord give thee understanding in all things? this included. Posterboy by the grace of God,

Read this posted on the FDA.gov site: https://www.fda.gov/food/guidanceregulation/guidancedocumentsregulatoryinformation/allergens/ucm362880.htm

Color me confused. I went to Costco yesterday and there were 2 products there that had GLUTEN FREE plastered on the box but then in the ingredients was a: May contain wheat. How is this possible? How can they still put gluten-free on the box? We should be able to trust gluten-free labeling no?? And second question: How many of you would still buy that item? I REALLY wanted to buy the Island Way Sorbet for my daughter as it is her FAVE. But I didn't want to take the risk. Maybe when she is healthier? I mean it is SORBET?! LOL So frustrating!