Celiac disease book project
Michelle is passionate about the concerns and voices of those that suffer with Celiac Disease. Being an individual that has Celiac Disease and being a parent of two children with the disease has been a life altering experience for her and her family. The Celiac Journey for every individual with the disease, grows as the person grows in their lives. Each milestone from schooling, to life events like family reunions, vacations, and weddings to critical care in illness and aging is affected by Celiac Disease in an individual that has been diagnosed and commits to the only medication available for those with Celiac Disease, a strict gluten free diet. Michelle’s background as a professional writer, a researcher and an academic as well as an individual with Celiac Disease (CD), gives her a unique, multi-faceted approach to exploring CD. Michelle’s project includes analysis and reviews of current medical research, legal movements, and media analysis. It will also include qualitative results from the intake of an anonymous questionnaire for voluntary participants that suffer from Celiac Disease and interviews of people with Celiac and loved ones of people with Celiac Disease. This web page will serve as working draft of some of the chapters as well as ways that individuals with Celiac can participate in the project. The CELIAC BOOK BLOG currently has questionnaire results categorized by topic. Check out the responses by clicking the blog topic. These blog pages will be update as more results are submitted and analysis will be added as well. Listed below is the scope of the project as well as the celiac participant questionnaire. If you have a loved one with Celiac, please scroll down to the Friends and Family Members Questionnaire! ALSO - anyone and everyone can participate by doing the Gluten Free in the Media Survery (also below) Please email Michelle michellesharkeyart@gmail.com if you would like an email version of the surveys or for any inquiries about the project!
SCOPE OF CELIAC BOOK PROJECT
Analysis of the multi-faceted nature of the affects of Celiac Disease including the following aspects:
Diagnosis and Delayed Diagnosis
Coinciding Health Issues
Dealing with social issues and the disease
Dealing with emotions that go along with this disease
Cross Contamination Sensitivity
Accessibility of Safe Foods
Prescription Drugs and Celiac
Traveling with Celiac Disease
The Grocery Store Experience and Celiac Food Deserts
How Celiac Disease affects Relationships (lovers, family and friends)
Covid Pandemic and Celiac Disease
History of Celiac Disease – how was it discovered – ancient origins and Nazi hospitals
Dealing with social issues and the disease
Dealing with emotions that go along with this disease
Learning to Cook (Again) the Celiac Way
Self Advocacy and Self Healing
Media Tools, Social Media Communities and Apps for those with Celiac Disease
celiac Disease book project participant questionnaire
Below is the Celiac Participant Questionnaire You can email your responses to michellesharkeyart@gmail.com - All answers submitted by participants will be kept confidential. Thank you for your participation.
Celiac Disease Participant Questionnaire
Please answer these questions to the best of your ability. Your information will be kept anonymous, and you will be labeled only by a participant letter, number, and/or non-identifying pseudonym. You may expand on any question that you would like. You may answer on a numbered separate document or underneath the questions, whichever you prefer. If a question does not apply to you, you can choose to discuss why or give related information or simply type N/A. You may also choose to skip any question that you do not want to answer. Just type SKIP. You do not have to give any reason to skip a question. If you feel the questionnaire is too lengthy and wish to skip for your own time management, please read over the entire questionnaire first and only answer the questions you feel are most important to you. All participants may want to read over the entire questionnaire before answering and begin answering questions out of order, this type of process is encouraged as some questions have longer answers than others. Please take all the time you need to answer these questions. Feel free to add any extra information that is important to you and label as ADDED BY PARTICIPANT. While your information will remain anonymous via the researcher in any and all publications referencing the information provided by the participant, participants may self-identify as a study participant to family, friends or on social media. Thank you again for your participation in this project! I sincerely hope that this project will help our community thrive better through more awareness of Celiac disease (researcher: Michelle Sharkey) You may email questionnaire answers to michellesharkeyart@gmail.com
Note: The researcher also encourages caregivers of family members with Celiac Disease and those with severe gluten intolerance or allergy to participate. Please follow the special instructions….FOR CAREGIVERS: Please answer and mark answers as CGR (abbreviation for caregiver response) or CDP (response either written or spoken by individual with Celiac Disease – transcribed by the caregiver- the questionnaire can have a combination of both caregiver and patient responses as long as they are marked accordingly) FOR GLUTEN INTOLERANT, ALLERGIC OR NON-CELIAC GLUTEN REACTIVE PARTICIPANTS: Please indicate at the top of the questionnaire your condition as well as the applying the abbreviation NCD after your answers (abbreviation for non-celiac disease)
Before and During the Diagnostic Process
1. What is your current age?
2. Where do you currently live?
3. What is your gender?
4. When did you start experiencing symptoms?
5. Where did you live when you started experiencing symptoms?
6. When did you begin pursuing a solution for your symptoms?
7. How long did it take you to get diagnosed after beginning the pursuit of DX of symptoms?
8. How many different doctors did you see before getting a correct diagnosis?
9. How many times did you go to the ER before getting diagnosed?
10. How many times were you hospitalized before you were diagnosed?
11. What tests were preformed to diagnose your celiac disease?
12. Where did you live when you were diagnosed?
13. Were your medical appointments and tests covered by insurance? If you were uninsured, did you use a social program (like sliding scale community health center) please describe the payment arrangement (if any). If you were a child, please discuss to your knowledge the coverage of appointments and testing to the best of your ability.
14. How long you have known about you celiac disease?
15. Did you have doctors that misdiagnosed your celiac as another ailment? Please expand on your experience.
16. What sort of symptoms did you experience prior to diagnosis?
17. Did your symptoms become progressively worse over time before diagnosis?
18. Did you have friends and family members that were helpful or supportive before or during the process of getting a diagnosis?
19. Did you have friends and family members who were detrimental, insensitive or unsupportive before or during the process of getting a diagnosis?
20. What other health conditions do you have?
21. What of these conditions are specifically to your knowledge ones that often coincide with the presence of celiac disease?
22. Which of these conditions were diagnosed before your celiac diagnosis?
23. What coinciding health conditions were diagnosed after your celiac diagnosis? Describe how you felt before diagnosis about your health.
24. Describe how your symptoms affected your daily life and activities before diagnosis.
25. Describe how symptoms affected your functioning at school or work before diagnosis.
26. Describe how your symptoms affected your enjoyment of leisure activities before diagnosis.
27. Describe how your symptoms affected your personal and familial relationships before diagnosis.
28. Describe your diet before diagnosis.
29. Did you make any changes to your diet to try to remedy the symptoms you were experiencing?
30. Describe your activity level before and during the diagnostic process.
31. Please write any extra information you would like to share about your experience before and during the diagnostic process.
32. What suggestions do you have or people experiencing symptoms of celiac disease and are pursuing a diagnosis of their ailment?
Immediately after Diagnosis – Getting Use to Living with Celiac Disease
33. How long do you think it took you to get use to buying gluten free food from the grocery store?
34. Did you have trouble accessing gluten free options at the grocery store immediately after diagnosis?
35. Did you find that shopping for gluten free items at the store came at an increased cost or a decreased cost or stayed the same? Please expand on this more.
36. How long do you think it took for you to get use to cooking gluten free food for yourself?
37. Did your insurance coverage or lack there of affect the choices that you made post diagnosis?
38. What services were provided (and were they covered or paid for out of pocket) to help you to adjust to eating a strict gluten free diet (example, consultations with a dietitian or nutritionist or access to support groups).
39. Were you provided with any professional guidance beyond your doctor? Describe your doctors’ suggestions and warnings for maintaining a gluten free diet.
40. What resources did you use to aid you in the transition from a traditional diet to a gluten free diet?
41. What mistakes did you make as you were adjusting to eating a gluten free diet?
42. Do you feel that you were sufficiently or insufficiently informed about cross contamination of food bought from the grocery store? Discuss.
43. Do you feel like you were sufficiently or insufficiently informed about cross contamination in medications? Discuss.
44. Were you at anytime given poor information or misinformation by a medical practitioner? Please describe.
45. How long did it take for your symptoms to improve after learning about your celiac (continuing symptoms will be discussed in another section)? Please describe your journey of healing post diagnosis.
46. Did you have friends and family members that were helpful or supportive after getting a diagnosis? Please discuss.
47. Did you have friends and family members who were detrimental, insensitive or unsupportive after getting a diagnosis? Please discuss.
48. Describe your diet immediately after diagnosis when you first began to eat gluten free.
49. How long did it take you to eat at restaurants after diagnosis?
50. How did you handle social events immediately after diagnosis?
51. Did your celiac diagnosis prevent you from participating in social activities immediately after diagnosis? Please discuss.
52. What suggestions do you have for people who have just been diagnosed with celiac disease and feel overwhelmed or confused?
Living With Celiac Disease as a Lifelong Commitment
53. Describe your current diet.
54. How often are you sick from eating cross contaminated food?
55. How often do you experience symptoms due to celiac disease?
56. Describe what it is like when you accidently ingest gluten.
57. How many times can you recall becoming sick from an item that was labeled gluten free from the grocery store?
58. How often do you become sick from food that is described as gluten free at a restaurant?
59. How do you determine if a restaurant is safe for you to eat at?
60. What precautions do you take when you eat at restaurants to manage your nutritional needs?
61. What precautions do you take when you travel to manage your nutritional needs?
62. How do you currently navigate dealing with your celiac disease at social events?
63. Describe how celiac disease currently affects your daily life and activities.
64. Describe how celiac disease currently affects your functioning at school or work.
65. Describe how celiac disease currently affects your enjoyment of leisure activities..
66. Describe how celiac disease currently affects your personal and familial relationships.
67. Did you have friends and family members that are helpful or supportive of your experience with celiac disease? Please discuss.
68. Did you have friends and family members who are detrimental, insensitive or unsupportive of your experience with celiac disease? Please discuss.
69. Have you had positive experiences with medical practitioners in regards to your celiac disease? Please Discuss
70. Have you had negative experiences with medical practitioners in regards to your celiac disease?
71. Describe your cooking habits at home.
72. How much pre-prepared and specialty products do you incorporate in your diet and what of these items do you purchase?
73. How many ready to eat snacks or meals do you incorporate into your diet and what are they?
74. How many meals do you make “from scratch” and what are they?
75. What tips would you give to someone who is living with celiac disease and having a hard time?
Accommodations and Cost of Celiac Disease
76. What accommodations or lack of accommodations are made by your current or previous employer or school for your celiac disease? Please also describe any current or previous treatment by employers or school administrators/faculty.
77. Do you find that your current gluten free food cost is more, less or the same as it would be if you were not celiac? Please describe.
78. How often do you go to the doctor to manage you Celiac disease?
79. What tests (example scopes/blood work) are regularly preformed to manage your Celiac disease and how often?
80. Are you currently insured and does your insurance cover your management of your celiac disease? If you feel as though you are insufficiently insured or if you are uninsured, what resources or disease management tools do you feel are out of your reach because of cost?
81. Have you lost a job or been turned down for a job opportunity because of celiac disease? Please discuss further.
82. Have you turned down a job or a career path because of your celiac disease? Please discuss further.
83. Have you had issues with co-workers, or fellow students at your place of work or school because of your celiac disease? Please discuss.
84. Have you turned down attending social events or travel opportunities because of Celiac disease?
85. Have you had issues with family members or friends because of your Celiac disease? Please discuss.
86. Have you been in the position where you have had a hard time accessing safe food? Please discuss.
87. What emotions do you feel when it comes to your Celiac Journey?
88. What would you like the world to know about Celiac Disease?
89. What changes would you like to see in the laws and regulations of gluten in food?
90. Is there anything you would like to add about your Celiac Journey?
Celiac and Gluten Free Diets in the Media
91. How do you feel about public treatment and response of the gluten free diet on social media?
92. How do you feel about the treatment and response of the gluten free diet in mass media?
93. How do you feel the media treatment of the gluten free diet has affected public perception of what it means to deal with Celiac disease and eat gluten free? How does this public treatment affect your daily life and habits?
94. How do you feel about jokes that make fun of the gluten free diet? Do you feel that such jokes affect the way individuals treat you in regards to you own diet? Please expand on this more thoroughly.
95. Watch this short video, Glutened by Hayley Repton which was made by a documentarian about being diagnosed with Celiac disease and discuss your impression of the documentary. Please take notes on specific parts of the video that leave an impression on you. In what ways can you relate to the subject in the video?
96. Watch this Dry Bar Comedy video of various comedians and their discussion of the gluten free diet called “Gluten Free Is a Sad Place to Be.” Please take notes on each comedian and discuss your impression of the performance.
97. Watch this clip of a commedian with Celiac Disease, “John is Gluten Free” by John Pinette and discuss your impression of the performance
98. Watch this ABC News clip and discuss your impression of how Celiac disease is presented to the audience
99. How would you like to see Celiac Disease presented to the public in news clips and informative videos online? Are there any recommended online resources that you suggest or that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
100, How would you like to see Celiac Disease presented in creative or fictional endeavors like comedy, television, artists and documentarians? Is there any recommended watching or reading that you suggest? Are there any that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
Please expand on anything else you would like to discuss. Thank you again for your valuable input!
Celiac Friends and Family Survey
1. Describe how you know your loved one with Celiac disease.
2. Do you live with a person with Celiac Disease?
3. Have you had to change your lifestyle or eating habits for your loved one with Celiac disease? Please describe.
4. Have you had to care for your loved one with Celiac disease during illness due to cross contamination or accidental ingestion?
5. What happens to your loved one when he or she is sick from gluten?
6. How do you feel when your loved one is sick from gluten?
7. What do you do to help your loved one when sick with gluten?
8. What do you do to help you love one prevent gluten contamination?
9. How has knowing someone with celiac disease changed the way you do social gatherings (if at all).
10. Describe what it is like going out to eat with your loved one with Celiac disease.
11. Describe what is like to travel with your loved one with Celiac Disease.
12. Describe if how your eating habits have changed since knowing someone with Celiac Disease.
Gluten Free in the Media
1. Do you have a gluten related disorder that requires you to eat gluten free? If yes, do you have to be careful of cross contamination?
2. Do you eat gluten free and why?
3. Do you know family or friends with a gluten related disorder?
4. Do you work in the food industry? If yes, what is your occupation?
5. Have you seen jokes about the gluten free diet on social media or mass media?
6. Have you seen information about Celiac disease and other gluten related disorders?
7. How do you feel about public treatment and response of the gluten free diet on social media?
8. How do you feel about the treatment and response of the gluten free diet in mass media?
9. How do you feel the media treatment of the gluten free diet has affected public perception of what it means to deal with Celiac disease and eat gluten free?
10. How do you feel about jokes that make fun of the gluten free diet? Please expand on this more thoroughly.
For the viewing section of this survey, feel free to choose to watch as few or as many as you’d like (you don’t have to do all the questions unless you want to)
11. Watch this short video, Glutened by Hayley Repton which was made by a documentarian about being diagnosed with Celiac disease and discuss your impression of the documentary. Please take notes on specific parts of the video that leave an impression on you. In what ways can you relate to the subject in the video?
12. Watch this video of various comedians and their discussion of the gluten free diet. Please take notes on each comedian and discuss your impression of the performance.
13. Watch this clip of a comedian with Celiac Disease and discuss your impression of the performance
https://www.youtube.com/watch?v=Zky2ShG3XPk&t=1s
14. Watch this news clip and discuss your impression of how Celiac disease is presented to the audience
https://abcnews.go.com/WNT/video/boy-celiac-disease-shares-emotional-letter-77789112
15. How would you like to see Celiac Disease presented to the public in news clips and informative videos online? Are there any recommended online resources that you suggest or that you have found to be helpful? Are there any that you have found to be harmful? Please expand.
16. How would you like to see Celiac Disease presented in creative or fictional endeavors like comedy, television, artists and documentarians? Is there any recommended watching or reading that you suggest? Are there any that you have found to be helpful? Are there any that you have found to be harmful? Please expand.