Cca/health Canada Survey

[num1habsfan]

In case anybody is curious, I finally got the survey (which I have 1 day to return, ahhh) from Health Canada/the CCA. I'm going to share the questions that were asked..bold is my answers (this way I can remember/compare for when they show the results!)

1. Are you 18 years of age or older? (yes/no)

2. Do you have a medical condition for which you follow a gluten-free diet? (yes/no)

3. Do you have Celiac disease? (yes/no/don't know)

4. How were you diagnosed (check all that apply)? (small intestinal(bowel) biopsy/antibody blood test/by physician, based on symptoms/fecal(stool) test, told by naturopath/identified it yourself/other, please describe)

5. How old were you when you were diagnosed with celiac disease? (___ years...my answer: 19)

6. Do you have dematitis herpetiformis (the skin form of celiac disease)? (yes/no/don't know)

7. Were you diagnosed with a positive skin biopsy? (yes/no/don't know)

8. How old were you when you were diagnosed with dermatitis herpetiformis? (___ years)

9. Do you have another medical condition for which you follow a gluten-free diet? (yes/no)

10. For which other medical condition do you follow a gluten-free diet? (_________...my answer: Crohn's disease)

11. Which of the follow best describes your diet (check only one)? (strict gluten-free diet all the time/strict gluten-free diet almost all the time/strict gluten-free diet most of the time/gluten-free diet sometimes/gluten-free diet occasionally)

12. Please check whether you did or did not have each of the following symptoms before you went on a gluten-free diet. Then check whether you have fully recovered from these symptoms while on a gluten-free diet (GFD). If you have only partially recovered, please check NO. (extreme weakness or tiredness-before/after...anemia-before/after...weight loss-before/after...diarrhea-before/after...constipation-before/after...bloating/gas/abdominal pain-before/after...nausea/vomiting-before/after...large, pale, foul smelling stools-before/after...migraine headache-before/after...bone/joint pain-before/after...muscle cramps-before/after...swollen hands/feet/ankles-before/after...easy bruising of the skin-before/after...mouth ulcers(canker sores)-before/after...itchy skin-before/after...feeling irritable-before/after...feeling depressed-before/after...mood swings-before/after...lactose intolerance-before/after...other, please describe-before/after)

13. How long did you have any of the symptoms listed in Question 12 before you were diagnosed? (I did not have any of the symptoms listed in Question 12/I had symptoms for ___ number of years or ___ number of months...my answer: 8 years)

14. How long have you been on a gluten-free diet? (less than 6 months/6 months to less than 1 year/1 year to less than 2 years/2 years to 5 years/more than 5 years)

15. At the present time, do you experience any symptoms if you consume something that contains gluten? (yes/no/not sure)

16. At the present time, what symptoms do you experience if you consume something that contains gluten (check all that apply)? (diarrhea/constipation/bloating and gas/stomach, abdominal discomfort/nausea and vomiting/weakness/tiredness/mouth ulcers(canker sores)/migraine headache/itchy skin/feeling depressed/other - please explain: brainfog (short-term memory loss))

17. How soon after eating gluten does your first reaction appear (please indicate the number of minutes OR hours OR days)? (___ number of minutes/___ number of hour(s)/___ number of day(s)...my answer: 2 hours)

18. How long do your reactions usually last (please indicate the number of Minutes OR hours OR days)? (___ number of minutes/___ number of hour(s)/___ number of day(s)...my answer: 9 days)

19. Have you ever experienced any symptoms after eating a product that was labeled "gluten-free"? (yes/no/don't know)

20. While following a gluten-free diet, how often did you intentionally eat gluten-containing foods in the past year (check only one)? (never/one or two times in the past year/once per month/two or three times per month/one or two times per week/three or more times per week)

21. If you do eat gluten-containing foods, it is mostly...(check only one)? (by mistake/by choice/because no gluten-free food is available/other-please explain)

22. How important is it for you to avoid gluten in your diet, in order to prevent a reaction? (not at all important, 1/2/3/4/5, very important)

23. How important is it for you to avoid gluten in your diet, in order to prevent long-term complications? (not at all important, 1/2/3/4/5, very important)

24. Have you tried eating pure, uncomtaminated oats (special oats that are not contaminated with wheat, rye, or barley)? (yes/no)

25. Did you have any reaction after eating pure, uncontaminated oats? (yes/no)

26. Please describe your reaction to eating pure, uncontaminated oats: _________

27. Please check whether you have or have not received any information about a gluten-free diet from each of the following sources, and if you have, please indicate the usefulness(poor/fair/good/very good/excellent) of the information that you received. (family doctor/gastroenterologist/dietician, nutritionist/Canadian Celiac Association/La Fondation quebecoise de la maladie coeliaque/local celiac chapter/alternative medical professional/another person with celiac disease/newspapers, magazines/internet/medical books/cook books/other-please explain)

28. Which of the following foods and ingredients are not allowed on a gluten-free diet (check all that apply)? glucose/soy flour/barley malt syrup/molasses/imitation crab meat/rye bread/wine/modified corn starch/spelt/canola oil/wheat starch/graham flour/regular soy sauce/glutinous rice/egg noodles/chick pea flour)

29. Do you still remember how you felt during the first few months while learning to follow a gluten-free diet? (yes/no)

30. During the first few months after diagnosis, how often did you feel the following emotions because of having to follow a gluten-free diet (for each emotion, please circle a number from 0 to 4..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (relieved/angry/sad/anxious/depressed/overwhelmed/frustrated/confused/isolated/accepting/other-please explain)

31. During the past month, how often did you feel the following emotions because of having to follow a gluten-free diet (for each emotion, please circl a number from 0 to 4..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (relieved/angry/sad/anxious/depressed/overwhelmed/frustrated/confused/isolated/accepting/other-please explain)

32. Do you participate in food preparation? (yes/no)

33. How often do you experience the following in relation to food preparation (for each statement please circle the number that applies; circle NA if a situation does not apply to you..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often, NA)? (I find it difficult to prepare meals for the family that include both gluten-free and gluten-containing foods/i find it frustrating to use gluten-free flours in my favourite recipes/there are limited choices of gluten-free foods that can be put into carried lunches/i worry about making mistakes with the diet/i find preparing gluten-free meals more difficult than preparing regular meals/i have to cook more often than I did before I went onto a gluten-free diet/i enjoy the challenge of making gluten-free foods/i cook only gluten-free foods for the whole family/i make extra gluten-free foods and freeze them for later use/I store gluten-free ingredients in a separate area to prevent possible contamination/i label all my gluten-free flours so I will not mix them up when I am cooking/I feel well adjusted to the changes that preparing gluten-free meals requires)

34. How often do you epxerience the following when purchasing gluten-free foods (for each statement please circle the number that applies; circle NA if a situation does not apply to you..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (i read every ingredient list to ensure that foods are gluten-free/i find it difficult to determine from the ingredient list whether packaged foods are gluten-free/i use the Canadian Celiac Association Pocket Dictionary to help me identify gluten-free foods/i can find a variety of gluten-free foods in local stores/the cost of commercially prepared gluten-free foods limits how much of these foods I buy/i get annoyed having to phone and or e-mail food companies to determine if products are gluten-free/i purchase gluten-free food by mail order/i think that gluten-free information given to me by food companies may not be correct/i resent the length of time it takes to read every ingredient list/i am concerned because gluten does not always have to be declared on food labels/i am frustrated because there are many different words that can identify gluten-containing ingredients in foods/i ask my local grocery store to carry gluten-free products I like)

35. How often do you experience the following situations when eating in restaurants (for each statement please circle the number that applies; circle NA if a situation does not apply to you..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (i call ahead of time to enquire about gluten-free menu choices when I go to a new restaurant/i cannot eat in restaurantsbecause the foods might be contaminated with gluten/my choice of restaurants is limited because of my diet/i get frustrated because there are so gluten-free menu choices in a restaurant/where I live, restaurants are able to provide accurate information about the gluten-free content of menu items/i enquire about the gluten content of all foods, including chips, tacos, seasoning, broth, sauces, etc./i resent being the one who is expected to make the decisions about which restaurants to go/i ask whether the restaurant has printed information about the gluten content of its menu items/i worry that the cook will not understand the care needed to prepare a gluten-free meal/gluten-free foods are as tasty as regular foods/i do not ask for changes to menu items because of my diet, for fear of being a bother/i use the internet to find restaurants that serve gluten-free foods/it is hard to find gluten-free choices in fast food restaurants)

36. Do you attend school/university, work or volunteer away from home? (yes/no)

37. How often do you experience the following situations when eating at school/university, at work or while volunteering (for each statement please circlen the number that applies; circle NA if a situation does not apply to you..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (a number of gluten-free menu options are available in the cafeteria/i find it difficult having to bring my own food for lunches/i am embarrassed to tell people i must have a gluten-free diet/i feel hurt when people are indifferent to my dietary needs/i feel badly when people try to make food i can eat, but they use gluten-containing ingredients without realizing it/i find it difficult to be spotlighted as having a problem/i have snacks on hand in case i need to eat at work, school, volunteering/i talk to people about celiac disease and the gluten-free diet/because of my diet, i find business lunches very stressful/if we have an event involving food, i remind people about my gluten-free needs/if there is an event involving food i offer to bring a gluten-free dish/symptoms associated with consuming gluten cause me to miss work, school, volunteering)

38. How often do you experience the following situations when travelling (for each statement please circle the number that applies; circle NA if the situation does not apply to you..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (i am anxious about traveling because of my dietary restrictions/i enjoy travelling as much now as when my diet was not restricted/i research restaurants in the area on the internet before i go on a trip/i carry a letter from my doctor indicating that i require a gluten-free diet/i find it difficult to have to carry my own gluten-free foods when i travel/in foreign countries i take translated information about gluten-free diet/i worry that i will not find gluten-free food when travelling/i feel sad that i cannot eat many of the typical foods of the country i am visiting/when i travel abroad, restaurant personnel are unaware of what gluten-free means/i am embarrassed to have to ask for gluten-free foods everywhere i go/travelling in foreign countries is difficult because i cannot tell from the labels if foods are gluten-free/it is difficult to find shops and restaurants that enable me to follow my gluten-free diet/i ccontact the Celiac Society in the country I plan to visit to get information on where to eat and buy gluten-free foods)

39. How often do you experience the following situations when eating with family/friends (for each statement please circle the number that applies; circle NA if a situation does not apply to you..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (my family has a good understanding of my dietary needs/my friends have a good understanding of my dietary needs/people think a little gluten will not hurt me/i feel embarrassed because of my dietary needs/i suspect that my family, friends are afraid to invite me for meals/i feel that i am a burden because of my dietary needs/when visiting i bring my own food to make it easier for the host/i find it hard to ask others to accommodate my gluten-free diet/i avoid going to social events involving food/i feel neglected because of my dietary needs/when i visit friends, family i check the ingredient lists on the foods that i eat/i share my best gluten-free recipes with friends, family/i do not like people feeling sorry for me because of my diet/because of my diet, i find it is easier for everyone if i take charge of meals/i find it is difficult to stnad up for myself and refuse gluten-containing foods that are offered to me/i invite friends, family to eat at my home so i do not have to worry about having gluten in my food)

40. Would you purchase a product to consume as part of your gluten-free diet if the food label contained the following phrases (for each statement, please check the best answer that applies..never, sometimes, always, don't know). (may contain wheat/may contain traces of wheat/manufactured in a facility that also processes products containing wheat/manufactured on the same equipment as products containing wheat/packaged in a facility that also packages products containing wheat/not suitable for people allergic, intolerant to wheat)

41. If you have checked "sometimes" or "always" in the previous question, how many times per month do you consume products that have a precautionary statement for wheat? (less than 1 time per month/1 to 3 times per month/more than 3 times per month/not applicable)

42. In general, how do you feel about the use of precautionary statements such as "May contain wheat" found on food labels today (for each statement, please check the best answer that applies..never, sometimes, always, don't know)? (precautionary statements are helpful/companies should use precautionary statements only when there is a real risk/the current precautionary statements are easy to understand/precautionary statements are used by companies to protect themselves/precautionary statements limit unnecessarily the food choices for people on a gluten-free diet)

43. Did you make any of the following job-related decisions because of your need to follow a gluten-free diet (check all that apply)? (i stopped working/i did not apply for a particular job/i avoided business travel/i changed jobs/i retired early/none of the above/other, please describe)

44. How often do the following statements pertain to you (circle a number between 0 and 4; if a situation does not apply to you, please circle NA..0=never, 1=rarely, 2=sometimes, 3=often, 4=very often)? (i find it difficult to determine whether the prescription drugs i buy are gluten-free/i find it difficult to determine whether the non-prescription drugs and vitamins I buy are gluten-free/i feel guilty about having passed celiac disease on to my children, grandchildren/i experience limitations in my religious practices because of my gluten-free diet/i have had difficulty obtaining gluten-free meals in hospitals, retirement residences/generally, i think that i am in good control of my gluten-free diet)

45. How would you rate your overall health status (please circle the best answer)? (excellent/very good/good/fair/poor)

46. How would you rate your overall quality of life (please circle the best answer)? (excelling/very good/good/fair/poor)

47. What is the most common problem related to your gluten-free diet that you face on an ongoing basis? (my answer: difficulty of purchasing gluten-free products)

48. Can you identify the most difficult problem you have ever faced related to following a gluten-free diet? If you can, please explain. (my answer: my family not being supportive of, or believing that I have, Celiac Disease)

49. What is the major benefit you have experienced from following a gluten-free diet? (my answer: being able to teach non-Celiacs just how many things gluten in found in)

50. What is your gender? (male/female)

51. How old are you? (___ years..my answer: 24 years)

52. What is the highest level of education that you have completed? (some elementary school/completed elementary school/some high school/completed high school/some CEGEP/completed CEGEP/some college or university/completed college or university)

53. What province or territory do you live in (please circle)? (BC/AB/SK/MB/ON/QC/NS/NB/PE/NL/NT/YT/NU)

54. Where do you live? (in a city of over 500,000 people/in an urban area of less than 500,000 people/in a rural area/on a reserve)

55. How many people, including yourself, are living in your household? (___..my answer: 1)

56. How many children aged 0 to 5 live in your household? (___..my answer: 0)

57. How many children aged 6 to 18 live in your household? (___..my answer: 0)

58. How many dependents older than 18 live in your household? (___...my answer: 0)

59. Please check which of the following options best reflects your household income before taxes: (under $20,000/$20,001-$40,000/$40,001-$60,000/$60,001-$80,000/over $80,000)

[ang1e0251]

Why did they send you this questionare? Was it prompted by your dr?

[num1habsfan]

Why did they send you this questionare? Was it prompted by your dr?

No, it was sent to all members of the CCA because Health Canada and the CCA are working together to try figure out how to make life easier for Celiacs if they know what we have to go through.