QUESTIONNAIRE RESULTS
Questionnaire Results
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….iT CONTAINS THER QUESTIONNAIRE RESULTS DIVIDED BY SECTIONS. RESULTS WILL BE INCORPORATED INTO CHAPTERS. ALL PARTICIPANTS ARE ANNONYUYMOUS AND LABELED WITH LETTERS AND NUMBERS
DIAGNOSIS & COINCIDING CONDITIONS
These are the questionnaire results in regards to diagnosis & coinciding conditions
4. When did you start experiencing symptoms?
12 (1K-T)
Symptoms were showing up as an infant, but never were explained or tested, dismissed as sensitive skin (2M-A)
I was asymptomatic at the time of my diagnosis, but struggled with stomach pain and diarrhea as a child (3K-C)
14 years old, but more likely developed at 12, 14 was just when it became a problem. (4-LJ)
When I was about 7 years old. (5M-S)
6. When did you begin pursuing a solution for your symptoms?
2 months after not being able to go to school due to stomach aches. Primary couldn't figure it out, so we went to GI (1K-T)
“6 months after having covid symptoms got so bad they werent ignorable anymore” (2M-A)
After I was diagnosed, I was told to meet with a nutritionist to learn about the gluten free diet. (3K-C)
14 years old, went to see a general physician about my sudden stomach pain and incontinence and theysuggested I had Celiac discease because I already had type 1 diabetes and it was common to develop (4-LJ)
I tried to alert family when I was growing up. I especially sought help in high school but no one listened to me. I kept trying throughout college and grad school. (5M-S)
7. How long did it take you to get diagnosed after beginning the pursuit of DX of symptoms?
2 months (1K-T)
“Never got an official diagnoses, was lacking insurance and couldnt afford testing, so along with information from my dad (diagnosed with cancer from his celiac) I did an elimination diet to see if there would be changes.” (2M-A)
As a type 1 diabetic, I was tested as a part of my routine blood work and told I had celiac disease. (3K-C)
Not long as I stated above. I immediately went to get a colonoscopy to confirm it was Celiac. I was placedon the gluten free diet from then on. (4-LJ)
From time of symptom onset 23 years and from the time I started pursuing because I was old enough to be able to, about 14 years. (5M-S)
8. How many different doctors did you see before getting a correct diagnosis?
2 (1K-T)
None (as a child many different doctors but never a diagnoses or test) (2M-A)
1 (3K-C)
Just two. It was a really simple process. (4-LJ)
At least 10 (5M-S)
9. How many times did you go to the ER before getting diagnosed?
0 (1K-T)
Had been for many spontanious hives as a child, and various other unexplainable things, like menstrual cycle going on for too long, problem was never found (2M-A)
None (3K-C)
Several times due to my diabetes, but not really for Celiac. (4-LJ)
4 (5M-S)
10. How many times were you hospitalized before you were diagnosed?
0 (1K-T)
None was always sent home (2M-A)
None (3K-C)
Just for my diabetes. (4-LJ)
4 for surgeries (5M-S)
11. What tests were preformed to diagnose your celiac disease?
EDG and colonoscopy (1K-T)
“I did an elinimation diet, 2 weeks after having cut gluten completely, broke out in a large rash under my chin after trying to sneak gluten” (2M-A)
Was positively identified via routine blood work, then a endoscopy to confirm damage to villae (3K-C)
Just a colonoscopy. The damage in my intestines confirmed Celiac. (4-LJ)
Blood work was done but was DX at first as having IBS. Then an actual DX of endometriosis delayed my DX as I have both conditions. Many ultrasounds were also preformed. Finally an endoscopy and colonoscopy as well as a pill camera were done. Other swallowing tests and barium contrasted imaging were preformed. (5M-S)
15. Did you have doctors that misdiagnosed your celiac as another ailment? Please expand on your experience.
They thought IBS at first due to family history (1K-T)
As a child was told I just had sensitive skin and needed to eat more bread and potatoes to gain weight. (2M-A)
No (3K-C)
No, they were very swift and accurate in their diagnosis. (4-LJ)
Yes, multiple other ailments. IBS and also my endometriosis were assumed to be causing symptoms. (5M-S)
16. What sort of symptoms did you experience prior to diagnosis?
Horrible stomach cramping, weight gain, bloating (1K-T)
Dermatitis rashes, lightheadedness, anxiety, acne, acid reflux, bloating, joint pain, bad breath, receding gums, low iron, sciatica nerve pain, (2M-A)
None (3K-C)
Bloating, nausea, diarrhea, intense cramping, mucus in stool, lots of gas. (4-LJ)
Terrible diarrhea, cold sweats, passing out, vomiting, shaking, terrible stomach pain, low blood pressure, low blood sugar, body aches, headache, bloating, vitamin deficiency, weight loss, hair falling out, itchy rashes (5M-S)
17. Did your symptoms become progressively worse over time before diagnosis?
Yes (1K-T)
Started off very bad as a baby and small child, eventually tapered off and unnoticeable, then worse and reverted back to the same symptoms as a child but worse after covid. (2M-A)
No (3K-C)
Yes. We estimate it started when I was about 12 based on the damage in my gut, the symptoms just weren’t noticeable enough. My villi were almost completely wiped out according to the colonoscopy. (4-LJ)
Absolutely, it is much worse over the years. Even after DX, I have become more sensitive to trace gluten. (5M-S)
COINCIDING HEALTH CONDITIONS
20. What other health conditions do you have?
Lactose Intolerance (1K-T)
Psoriasis (2M-A)
Type 1 Diabetes, Hypothyroidism (3K-C)
Type 1 diabetes and gastroparesis. (4-LJ)
Hypothyroidism (autoimmune), Interstitial Cystitis (auto-immune bladder disease), endometriosis, lupus, parathyroid adenoma (5M-S)
21. What of these conditions are specifically to your knowledge ones that often coincide with the presence of celiac disease?
Lactose Intolerance (1K-T)
Psoriasis (2M-A)
Both (Type 1 diabetes and hypothyroidism) (3K-C)
Diabetes for sure, I’m not sure if the Celiac influenced the gastroparesis or not. (4-LJ)
All of them Hypothyroidism (autoimmune), Interstitial Cystitis (auto-immune bladder disease), endometriosis, lupus, parathyroid adenoma (5M-S)
22. Which of these conditions were diagnosed before your celiac diagnosis?
Lactose Intolerance (1K-T)
Psoriasis (2M-A)
T1D (2004), Hypothyroidism (2007), Celiac (2009) (3K-C)
I was diagnosed with diabetes when I was 11, the day before Halloween. (4-LJ)
Hypothyroidism (autoimmune), Interstitial Cystitis (auto-immune bladder disease), endometriosis, lupus, parathyroid adenoma
23. What coinciding health conditions were diagnosed after your celiac diagnosis? Describe how you felt before diagnosis about your health.
None (1K-H)
None so far (potentially adhd and autsim, but testing is needed.), also showing signs of premature menopause but testing is needed in case its something else.
I spent my entire life very anxious, knowing something was wrong with me but never able to figure it out and told over and over again by doctors im healthy and fine (2M-A)
Thankfully nothing since (3K-C)
Like I said, maybe the gastroparesis. It took me years to recover and lots of doctors and medications before I found the right kinda meds and diet. I felt awful all the time, constantly in pain. I smoked cigarettes just to try and settle my stomach, I was that desperate. (4-LJ)
Interstitial cystitis (same time), parathyroid tumor, lupus (5M-S)
27. Describe how your symptoms affected your personal and familial relationships before diagnosis.
Made fun of for regular rashes and always eating, never gaining weight (2M-A)
No affect (3K-C)
Nothing really changed, other than I was drained and depressed. (4-LJ)
It affected it a lot. Family never believed that I was really as sick as I was and were completely unsympathetic and unhelpful. (5M-S)
Questionnaire Results SOCIAL EFFECTS
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
These are the Celiac participant questionnaire results thus far as well as the friends and family survery results
SOCIAL EFFECTS
18. Did you have friends and family members that were helpful or supportive before or during the process of getting a diagnosis?
Yes (1K-H)
Dad and mom both supportive as it explained a lot they could never figure out before (2M-A)
My family was supportive after diagnosis, but generally not impacted unless visiting (3K-C)
Yes, my family cared for me as much as they could. My mom would bring meals into the bathroom if I was stuck there having a Celiac flare up. My friends at high school also sent me lots of support and love while I was hospitalized. (4-LJ)
Yes there were a few that were knowledgeable about Celiac, but at the time (2005) not a lot of people understood the condition. (5M-S)
19. Did you have friends and family members who were detrimental, insensitive or unsupportive before or during the process of getting a diagnosis?
No (1K-H)
Several friends and coworkers, people often think its an exaggeration that im lying about symptoms (2M-A)
No (3K-C)
Not that I can recall. (4-LJ)
Yes, my parents did not take me to the doctor even though I complained about stomach issues. I was labeled a hypochondriac. Eve after being diagnosed and getting contaminated, family members didn’t understand the severity of Celiac and thought I was just faking or crazy. (5M-S)
46. Did you have friends and family members that were helpful or supportive after getting a diagnosis? Please discuss.
Yes, there is always a gf option made/bought special for Ty when we see friends/family”(1K-H)
Yes, shared recipes and found safe foods were shared (2M-A)
Yes. Many friends were supportive and helpful in navigating my new diet. Especially my fellow celiacs. (3K-C)
Yes, they all were super supportive. I felt blessed by their level of sympathy. (4-LJ)
I had many supportive friends but not as many supportive family members (5M-S)
47. Did you have friends and family members who were detrimental, insensitive or unsupportive after getting a diagnosis? Please discuss.
No (1K-H)
“Yes, often told cannot know its veliac without test, despite vidable symptoms when gluten is ingested and strict gluten free diet having cleared symptoms” (2M-A)
No (3K-C)
No, not that I can recall. (4-LJ)
I had some friends that at first didn’t understand the severity but as they got to know me better, they understood better. Some family members were very supportive while others were the opposite. (5M-S)
50. How did you handle social events immediately after diagnosis?
Very carefully. He's old enough to know what to avoid, which helps. (1K-H)
Just didnt eat, bring my own drinks and food (2M-A)
Wasn’t trusting of others to prevent cross contamination (3K-C)
Not well, I was too sick to ever leave home pretty much. (4-LJ)
I would eat before or bring my own food (5M-S)
51. Did your celiac diagnosis prevent you from participating in social activities immediately after diagnosis? Please discuss.
No (1K-H)
No, just didn't eat the food but still went out (2M-A)
Maybe not prevent, but certainly altered the way I participated (3K-C)
Just pizza parties, really. (4-LJ)
Yes sometimes we would skip food related events just to avoid the issue. (5M-S)
66. Describe how celiac disease currently affects your personal and familial relationships.
People have been understanding more. Im very clear about explaining it and feeding myself so I dont have to stop anything(2M-A)
My partner has respected my needs since we started seeing each other. She sticks to the GF diet for the most part. If she does bring gluten into the home she takes extra precautions not to contaminate shared area or cleans up the area to prevent illness. When I visit my family, they take care to provide space to store and prepare my own food so I don’t get sick. (3K-C)
Not at all, my friends are very understanding and I try to educate the people close to me so they better (4-LJ)
I have a whole group of family members that have not been understanding about my celiac and instead of supporting me have attacked me. I had to cut ties with a lot of family members because of how they treated me when I almost died of cross contamination of my thyroid medication. (5M-S)
67. Did you have friends and family members that are helpful or supportive of your experience with celiac disease? Please discuss.
I’m grateful to have respectful people in my life. (3K-C)
Yes, most of them, actually. Only discrimination I faced was in the workplace. (4-LJ)
I have several wonderful family members – mostly cousins who have been extremely supportive. I also have many friends who were supportive of me. (5M-S)
68. Did you have friends and family members who are detrimental, insensitive or unsupportive of your experience with celiac disease? Please discuss.
Only discrimination I faced was in the workplace. (4-LJ)
No (3K-C)
Yes. I have had family members that thought I was “crazy” when I was extremely ill and other family members when I dropped a lot of weight from malabsorption that said, “I wish I could lose weight like that.” (5M-S)
FROM FRIENDS AND FAMILY SURVEY:
1. Describe how you know your loved one with Celiac disease (ex; best friend, sister, spouse):
Wife. (1- TW)
My mother has lived with celiac for my entire life, and it had a major impact on
our whole family. We had to be very cautious at all times, since even the tiniest
amount was enough to put her in bed for a whole day, sometimes even longer. It
even caused us to move out of our home in Memphis just so we could the right
doctors to treat it. (2-MS)
Neighbor, friend, co-worker (3-PB)
2. Do you live with a person with Celiac Disease?
Yes. (1- TW)
Not currently. (2-MS)
No (3-PB)
3. Have you had to change your lifestyle or eating habits for your loved one with Celiac disease? Please describe.
Yes. Everything from the food I eat to the drinks I drink and the products that I use like paper plates, body wash are gluten free (1- TW)
When I was really young, we could get away with keeping food with gluten in our
home. However, as time went on, my mom became more sensitive to it, so
gluten had to be banned from our home. We couldn’t eat at restaurants since
even the gluten free places were still a big risk, and we even had to change other
products we used since gluten used in things that weren’t even food. (2-MS)
I have. I enjoy cooking very much and have noticed since I befriended my Celiac friend, I’ve been far more conscious of what goes into my food and trying to find Celiac friendly options. (3-PB)
4. Have you had to care for your loved one with Celiac disease during illness due to cross contamination or accidental ingestion?
Yes Many times (1- TW)
I did help out as best I could, however, there wasn’t much I could do, since celiac
seemed to be the kind of thing that only time could make better, if only
marginally. (2-MS)
No (3-PB)
5. What happens to your loved one when he or she is sick from gluten?
She is in severe pain in her abdomen. She feels faint or nauseous. Then, she becomes in physical distress and has to camp out on the toilet trying not to pass out from the pain. She has cycles of yawning, fainting, defecating, vomiting and this last for at least a couple of hours. Nothing that I can do can help her, except make sure that she doesn’t hot her head when she faints and make sure that she is as comfortable as possibly from her contamination. (1- TW)
For my mom, she would have to be in bed. Her stomach would be in so much
pain, I could only imagine how bad it would be if she tried working or something
Lawd, all manners of things. I’ve mostly heard complaining about stomach pain and fatigue. (3-PB)
6. How do you feel when your loved one is sick from gluten?
Heartbroken. Empathetic. Wanting to help. (1- TW)
Awful, it’s kind of like how you could see a heavily injured cat on the street and
you desperately want to help them feel better, except you can’t. (2-MS)
I fell awful for my friend when she is sick. Its so shitty that this (allergy) isn’t well reported via ingredient lists and menus (3-PB)
7. What do you do to help your loved one when sick with gluten?
After she is contaminated and is no longer on the toilet, I will grab a heating pad and water and medication to help her with the pain and monitor her while she sleeps by checking on her every 30 min to an hour. Making sure that if she needs a hand with anything that I’m available. (1- TW)
Anything my mom asked me to do, since I don’t know too much about what’s
best to treat it, she would tell me what to get her to help. (2-MS)
Not much honestly (3-PB)
8. What do you do to help you loved one prevent gluten contamination?
I help by checking labels on store bought products. I also help reiterating at restaurants how important it is that if a restaurant advertises gluten free that it is in fact gluten free because sometimes she is shy (1- TW)
Anytime, I would either get food for her or ingredients to make something, I would
always verify what ingredients had what, since just looking for things that said
gluten free wasn’t sufficient enough to keep her from being sick. (2-MS)
I try to ship for gluten free items and inquire with my friend which items are kosher (slang for okay – not actually Kosher) to eat. (3-PB)
9. How has knowing someone with celiac disease changed the way you do social gatherings (if at all) with them?
It hasn’t changed much except we know to bring our own food and drinks. Most of the time the food is not gluten free or it is cross contaminated. (1- TW)
Nowadays, not really, although, if I find out someone else has celiac, I like to talk
with them and share experiences with it. (2-MS)
It’s impacted my social gatherings significantly. I find myself much more conscious of what is in food/how it is prepared and ways to ensure my friend can participate. (3-PB)
10. Describe what it is like going out to eat with your loved one with Celiac disease. It rarely happens.
Most of the restaurants that we try out she gets a little sick from and all the good ones that we use to go out to have closed. We do a lot of at home cooking which is ok because it saves us money. (1- TW)
We almost never did at some point due to how dangerous it was. There was a
small selection of places that were safe, we didn’t get to eat much variety unless
she decided not to eat anything (thanks, mom). (2-MS)
We have to be careful regarding going out to eat. Its very frustrating that restaurants don’t’ seem to be aware of such a large condition (3-PB)
11. Describe what is like to travel with your loved one with Celiac Disease.
Traveling is frustrating. Especially the places that don’t acknowledge celiac as an actual disease rather than someone preferring not to eat gluten. If you ask them to make something gluten free, and you order something with crutons, they will go to the kitchen and remove them and give you the exact same salad. That will make my wife sick so which can be very frustrating. So we book hotels with a kitchen so we can cook instead of eating out. (1- TW)
Traveling was only affected if she got sick, in which case, it was the same deal
as it was at home. And most restaurants were banned unless WE KNEW it was
safe. (2-MS)
N/A (3-PB)
12 What would you say to someone that doesn’t know about celiac disease?
That it is very important that people realize that it is like any allergy, like a peanut allergy, that ingesting gluten can dramatically change someone’s life for the worse. They need to be sympathetic to people with celiac disease and be sympathetic like they are with people with other allergic reactions. (1- TW)
Again, nowadays, it doesn’t affect me too much. It might have encouraged me to
eat healthier when I can, but honestly, when I moved out and wasn’t as restricted
from eating what I wanted, I started eating whatever I wanted. It was kinda
relieving. (2-MS)
Without a doubt, it has changed my eating habits for the better, I’d say. I find myself being better educated about the condition, aware that “gluten free” on a label doesn’t always mean much. Knowing my friend and her family has made me infinitely more aware of what goes into our food production as well as preparation. Cross contamination is so common. I had no idea. (3-PB)
13. Where you aware of celiac disease before meeting you loved one?
No. (1- TW)
No (3-PB)
Questionnaire Results CROSS CONTAMINATION & LABELING
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
These are the questionnaire intake results for this topic thus far:
CROSS CONTAMINATION AND LABELING
54. How often are you sick from eating cross contaminated food?
“We dont go out often, so rarely. “ (1K-H)
Not very often now, maybe once every 4 months or so (2M-A)
Very rarely. I take much more precautionary effort to figure what is safe and has the lowest risk (3K-C)
Not often anymore. I’m very careful of where I eat. (4-LJ)
Too often. I am hyper sensitive and will usually get sick at least once a month from kissing my husband when he doesn’t shave or something stupid like that. (5M-S)
55. How often do you experience symptoms due to celiac disease?
Rarely (1K-T)
Still struggle wit fatigue, but most other issues have cleared (2M-A)
Very rarely (3K-C)
Maybe once or twice a week? Even with medication, it can be out of my control sometimes. (4-LJ)
Too often. I am hyper sensitive and will usually get sick at least once a month from kissing my husband when he doesn’t shave or something stupid like that. (5M-S)
56. Describe what it is like when you accidently ingest gluten.
It feels like my stomach is dying. (1K-T)
Get super emotional, dizzy, face gets red and hot, rashes, hard bloating (2M-A)
Pointed and general stomach pain, low energy, occasional diarrhea. (3K-C)
Painful, so painful. Bloating, diarrhea, gas, nausea, it’s like my body is ripping itself open. (4-LJ)
Like dying. I usually start feeling a total body sick feeling – it feels like coming down with the flu. Then, I feel like my heart is beating faster and the stomach pains begin. Then I have severe diarrhea and pass out. The pain is unbelievably terrible. I will vomit and pass out and being in terrible pain for hours. After it passes (several hours later), I suffer from a lesser stomach pain and diarrhea for about a week. Then I start having signs of malnutrition like my hair falling out, bruising easily and fatigue. My rib cage and sternum swells for several days to two weeks. (5M-S)
57. How many times can you recall becoming sick from an item that was labeled gluten free from the grocery store?
2 (1K-H)
At least 5 (2M-A)
Maybe twice? (3K-C)
None that I can recall. (4-LJ)
At least 10 times since I have become very sensitive to anything with trace amounts of gluten. (5M-S)
58. How often do you become sick from food that is described as gluten free at a restaurant?
“Hasn't happened. We've been super picky about where we'll eat out.” (1K-H)
Not very often, has happened maybe twice (2M-A)
Sometimes. Maybe 1/5 experiences (3K-C)
Not very often, I try hard to research where and what is safe for me to eat. (4-LJ)
Probably 25% of the time if it is not a vetted place. I search celiac apps and websites to see if others have had issues with restaurants. I use to be less strict about where I went and would get sick probably at least 50% of the time. I am a lot more careful now. (5M-S)
59. How do you determine if a restaurant is safe for you to eat at?
“Call and talk to chef. Make sure they have true protocols in place.” (1K-H)
How many gluten free options they have, the types of items, asking if they have a separate prep space and friers (2M-A)
I try and research the menu ahead of time. Occasionally I will try and get clarity from the server about the Rick of cross contamination. (3K-C)
Research into the ingredients going into my dish and how the restaurant’s kitchen is set up. (4-LJ)
I use the app Gluten Dude. I also ask a lot of questions. I am never afraid to walk out if staff does not seem very dedicated to trying to ensure my safety (I know it can still happen). I explain cross contamination and request a clean area and gloves. (5M-S)
60. What precautions do you take when you eat at restaurants to manage your nutritional needs?
Typically just avoid them, otherwise ask wait staff about gf options (2M-A)
Research menu. I also end up eating more often at places I have had safe experiences(3K-C)
Just watching my carb intake. (4-LJ)
Asking a lot of questions and talking to the staff. I do a lot of research beforehand. I also don’t go to back places that have made me sick and I frequent places that I know are safest. (5M-S)
61. What precautions do you take when you travel to manage your nutritional needs?
“Bring your own food” (1K-H)
Typically bring my own food (2M-A)
Really the same answer as above. It takes additional preparation to find safe and available places to eat or buy safe food. (3K-C)
I just pack my own food. Can’t risk not finding food I can eat. (4-LJ)
I always have a place with at least a mini kitchen. I always plan to shop for some food at a store. When a grocery store is not accessible, we have had luck at drugstores like Walgreens and CVS. We never ever take chances with a restaurant that is questionable. (5M-S)
62. How do you currently navigate dealing with your celiac disease at social events?
Just bring my own food and drinks and keep them separate (2M-A)
Unless I’m certain that correct precautions were taken and safe food is available, I usually don’t eat. (3K-C)
Usually eat beforehand. If I find things to nibble on that are safe, bonus for me. (4-LJ)
I usually eat before or I bring my own food. A lot of times, I attend events and have to turn down food. This usually results in a conversation about Celiac. (5M-S)
81. Have you lost a job or been turned down for a job opportunity because of celiac disease? Please discuss further.
N/A (2M-A)
No (3K-C)
Yes, quite often. Interviews will go great and then I bring up my illnesses and I would never get a call back. It’s hard finding work being sick, but not sick enough for disability. (4-LJ)
No (5M-S)
82. Have you turned down a job or a career path because of your celiac disease? Please discuss further.
N/A (2M-A)
No (3K-C)
I was on my way to get through high school and get a full ride to college to pursue mechanical engineering, but when I got my Celiac I was so sick for so long I had to drop out of school. I’ve been (4-LJ)
Yes. I have turned down jobs that would require me to be around gluten. (5M-S)
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.
Only over people not believing my symptoms (2M-A)
No (3K-C)
Yes, managers used to get pissed at me all the time, coworkers would make jokes about me, it was humiliating. (4-LJ)
Yes. I have turned down jobs that would require me to be around gluten. (5M-S)
84. Have you turned down attending social events or travel opportunities because of Celiac disease?
No (2M-A)
No (3K-C)
Only when I have bad flare-ups. (4-LJ)
I have turned down going to social events like potlucks or banquets just because it can be a lot harder to navigate. Many pay to enter events that include food often don’t have a separate price for those who don’t want to eat. Many times, I will turn down this type of event. This includes family reunion events that are charged by the head and not by the plate. (5M-S)
85. Have you had issues with family members or friends because of your Celiac disease? Please discuss.
No (2M-A)
My older sister can occasionally be focused only on herself and in a few instances offered to cook for family gatherings or holidays and ignored my needs. It sucks, but I learned to not rely on her or others to prepare food especially for me. (3K-C)
Not particularly, no. (4-LJ)
Yes. I have had many family members that have been just gawd-awful about my celiac disease. Insisting that I am being overdramatic or lying or exaggerating…or wanting to meet up at restaurants that they know my boys and I cannot eat at. I had too many problems and had to stop talking to most of my family over that and other issues. (5M-S)
Questionnaire Results DAILY LIFE WITH CELIAC
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
Here are the Questionnaire Answers I have received thus far in regards to the questions concerning daily life with Celiac Disease
DAILY LIFE WITH CELIAC
24. Describe how your symptoms affected your daily life and activities before diagnosis.
Didn't want to get out of bed. Always in pain. (1K-T)
I was tired very easily, had to make sure to eat enough during the day or I would get lightheaded, dizzy, and shaky. I went to the bathroom frequently, joint pain made it hard to work a lot, (2M-A)
No affect, was blissfully unaware (3K-C)
Lots of time in the bathroom. Severe incontinence forcing me to constantly drop what I’m doing to go to the bathroom. (4-LJ)
I could barely do anything. I did my best to schedule normal activities and work but sometimes both would be affected by me having to be in the bathroom. I was able to get on disability services in college to allow me time off when I was sick. Before that, I would be stuck in the bathroom and embarrassed. The same was true about social situations. (5M-S)
25. Describe how symptoms affected your functioning at school or work before diagnosis.
Didn't go to school for about 2 months because my stomach hurt so bad (1K-T)
Regularly missed school for rashes , often called off work (2M-A)
No Affect (3K-C)
School was awful. My brain was in a constant fog because of my near constant flare ups. I could hardly focus and I lost tons of weight. I was 5’ 9” and weighed 85 pounds. (4-LJ)
I did my best to power through symptoms but often it was affected. (5M-S)
26. Describe how your symptoms affected your enjoyment of leisure activities before diagnosis.
I couldn't do anything (1K-T)
Food would make me bloated and sleepy, when out drinking hands and legs would often go numb giving more anxiety (2M-A)
No Affect (3K-C)
I couldn’t enjoy anything. I couldn’t ever get too invested in any project because I might have to run to the bathroom. (4-LJ)
I would cancel and stay home. I had little or no energy. I would want to be by the bathroom. I got worse the older that I got. (5M-S)
30. Describe your activity level before and during the diagnostic process.
Very low (1K-T)
Been consitstantly low. Always been very tired and slow, never a very active person (2M-A)
Pretty active. Played softball and running. (3K-C)
Very little, I had no energy to do anything but play on my laptop. (4-LJ)
I love being active. I tried to be on many sports teams in high school and never could excel because of my energy level. It got worse as the years went on. It became harder to exercise. I lost a lot of weight. (5M-S)
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.
About 2 weeks after cutting out gluten completely he was back to school (1K-H)
Took only a couple weeks, and then they plateaued, took full 2 years to finally feel normal (2M-A)
I didn’t experience symptoms until I had adhered to the GF diet for a few months. Then got sick after eating out due to cross contamination. (3K-C)
3 years. 2 of them I practically lived in the bathroom, with my tv tray and computer. I spent most of my time online because I couldn’t leave my home. The friends I made really helped me hold on. (4-LJ)
. They started to improve immediately but I still struggled for about two or three years before I was really a lot better. I had many set backs due to cross contamination. (5M-S)
63. Describe how celiac disease currently affects your daily life and activities.
Doesnt really interrupt anything unless Im hit with gluten. Then Ill take allergy medicine and just go home (2M-A)
I’m used to it. (3K-C)
I’m in some form of pain most of the time. I smoke pot to help deal with the pain. I just do my best to ignore it. (4-LJ)
I am use to having to determine what level of activities I can participate in considering pain and energy level. There have been times that it was difficult to find safe food. (5M-S)
FROM THE CELIAC JOURNEY WEBSITE
Having said that, our family has adjusted to our new normal which Leslie and Jax chronicle on Instagram @Glutenfreefinds_pa, and our son has been amazing in his adaptability. Until such time as other treatments and a cure are found, we hope others will check their food privilege and understand that reasonable, common sense and low impact accommodations foster inclusion to help those with Celiac Disease and food allergies, especially children, safely and successfully navigate a gluten filled world. (Bari, The Celiac Journey Feb 2021)
64. Describe how celiac disease currently affects your functioning at school or work.
Doesnt interrupt too much anymore (2M-A)
I work from home so my usual day-to-day is not affected (3K-C)
Luckily my work is very understanding and accommodating of my illnesses. I feel very blessed for that, it’s hard to find. (4-LJ)
In the past, I would have a hard time having to be in the bathroom a lot. I am lucky that my current boss is understanding of my celiac and understands if I get contaminated I might have to call out that day. When I was very sick in school (college and grad school), I had allowances for absences because I was registered with disability services. (5M-S)
65. Describe how celiac disease currently affects your enjoyment of leisure activities.
Doesnt get in the way, typically just bring my own things and im good (2M-A)
It really doesn’t (3K-C)
Not too badly. Sometimes I have to cancel plans due to feeling sick, but that’s not often anymore. (4-LJ)
Worrying about whether my stomach will act up or having to figure out food is an added stressor of celiac. (5M-S)
Questionnaire Results DIET, COOKING & SHOPPING
THIS BLOG ENTRY IS AN UNEDITED WORK IN PROGRESS….
These are the intake results from the Celiac Questionnaire this far
DIET, COOKING AND SHOPPING
28. Describe your diet before diagnosis.
“I ate everything” (1K-T)
“A lot of spaghrtti, bread, fast foods” (2M-A)
Bad. Fast food, beer snob, not balanced (3K-C)
Oh, LOTS of gluten. Pasta, sandwiches, fried food, roux, it was in almost every dish my mom cooked. (4-LJ)
I ate very little because everything made me feel bad. I went through multiple times of being vegetarian. I would eat mostly rice and broccoli or veggies mixed with chicken. I might eat a hot dog or taco. I was fortunate that a lot of my diet was gluten free by default. (5M-S)
29. Did you make any changes to your diet to try to remedy the symptoms you were experiencing?
Tried eating healthier, drinking more water (1K-T)
Yes, cut out gluten first, saw imporvement, than gradually cutout more foods, and reintroduced them, leaving out ones that caused discomfort on reintroduction (2M-A)
No (3K-C)
I stick very strictly to a gluten free diet. My gut was so damaged I had to go to the hospital because plain white rice made me sick and they deemed me unable to digest food. I was on a banana bag for about a month and was visited by multiple doctors. After I left the hospital, I had to stick to the ulcerative colitis diet while my gut healed for nine months. (4-LJ)
Yes I stopped eating meat and ate mostly cheese, rice and veggies. (5M-S)
33. How long do you think it took you to get use to buying gluten free food from the grocery store?
We quit buying gluten completely for the whole household. His brothers have some snacks in their rooms they know to keep away from Tyler. (1K-H)
A couple months (2M-A)
5 or 6 months. Mostly getting used to having to grocery shop instead of eating out (3K-C)
It was a process parsing out the good brands from the bad. But I adapted pretty quickly, I think. (4-LJ)
I made the mistake of buying oats for months. I also used soy sauce unknowingly. I also didn’t really know what to eat other than rice and veggies. I probably ate almost only that for 3 or 4 years. There was not many specialty foods available at the time. When the specialty food access became better, then easier. (5M-S)
34. Did you have trouble accessing gluten free options at the grocery store immediately after diagnosis?
We were super lucky and have a gluten/dairy free bakery owned by a person with celiacs. It tastes almost the same!(1K-H)
Yes, it was hard to locate safe food items (2M-A)
At first, but after about a year options became much more plentiful. (3K-C)
Yeah, we had to go to specialty stores like Whole Foods or Trader Joe’s to find anything gluten-free. We managed, but it was a hastle. (4-LJ)
Yes aside from naturally gluten free items. Even Whole Foods didn’t have gluten free specialty options (2005) (5M-S)
36. How long do you think it took for you to get use to cooking gluten free food for yourself?
Pretty Immediate (1K-H)
About 4 months, one I learned to read labels properly it got easier (2M-A)
A few months. The learning curve is steep but sustainable after you understand what’s required. (3K-C)
It took about a few years, but I followed cook books and blogs to learn what all can be done gluten free. (4-LJ)
Other than basic stuff like rice and veggies, probably 2 or 3 years. (5M-S)
41. What mistakes did you make as you were adjusting to eating a gluten free diet?
My son’s 5th grade class were baking a cake and refused to use gf flour (that I offered to supply). That was hard. We've been okay at home, though. (1K-H)
Not being careful at restraunts, not double checking ingredients, (2M-A)
I placed too much faith in servers and cooks at restaurants to listen to my special requirements and then assumed they would follow the instructions. Got sick too often. (3K-C)
Mostly cross contamination or misreading a label. (4-LJ)
Oats and soy sauce (5M-S)
42. Do you feel that you were sufficiently or insufficiently informed about cross contamination of food bought from the grocery store? Discuss.
I did my own research. Which companies claim GF, but CC in factory. (1K-H)
Suffiently, but I did my own searches for information (2M-A)
It was never a concern of the store to make an effort to prevent it because of how small the celiac popular is compared to the general public (3K-C)
Yes, I was. It took a lot of getting used to avoiding cross contamination. (4-LJ)
No and I still don’t think my doctors understand it (5M-S)
43. Do you feel like you were sufficiently or insufficiently informed about cross contamination in medications? Discuss.
He’s not on any meds (1K-H)
Sufficiently, found info myself, (2M-A)
It wasn’t something that was explained with the exception of the list of ingredients to avoid from the nutritionists. Thankfully, I only take one oral medication in addition to insulin delivered via pump. (3K-C)
I wasn’t even aware until very recently you could be cross contaminated in medications. (4-LJ)
I was never told that this could be a problem. I was cross contaminated by a medication (5M-S)
48. Describe your diet immediately after diagnosis when you first began to eat gluten free.
Took a while to find stuff he liked, so he stuck with fruits/veggies/chicken breast for the first few weeks. (1K-H)
Lot of prcessed gluten free foods at first, frozen meals (2M-A)
. Grits, eggs and cheese. I basically only ate that for around a month. Eventually I located some GF bread and pasta and began branching out. (3K-C)
Lots of rice, gluten free pasta dishes, curries and stews. (4-LJ)
Rice and veggies. I was to afraid to eat anything else (5M-S)
49. How long did it take you to eat at restaurants after diagnosis?
3 months (1K-H)
About 8 months, but im still uncomfortable at them (2M-A)
Not long enough. (3K-C)
About a year and I could only eat at sushi restaurants. (4-LJ)
A year (5M-S)
53. Describe your current diet.
Pretty normal. We just don’t have gluten around. (1K-H)
Mostly just rice and vegetables (2M-A)
Varied but adhered to GF diet. More cooking than dining out. (3K-C)
I try to balance between grain, veggies, and proteins. I have to watch my diet anyway for my diabetes, so I try to maintain a good, varied diet. (4-LJ)
A big variety. Everything that I love, I make for myself. Lots of simple and basic dishes… rice and tacos. (5M-S)
71. Describe your cooking habits at home.
Mostly one pot meals in instant pot, own toaster oven no one else uses, occasionally cakes cooked in toaster oven (2M-A)
We cook dinner most nights. Lunch is usually something small or leftovers. I rarely eat breakfast. (3K-C)
Always make sure my surfaces and cookware are clean and free of contaminates and I keep my gluten free food separate. (4-LJ)
I cook a variety of dishes from scratch like GF pasta, rice dishes, Mexican food, asian foods, etc (5M-S)
72. How much pre-prepared and specialty products do you incorporate in your diet and what of these items do you purchase?
Typically only buy the gf noodles, cans of beans, and frozen pizzas now. I purchase all of my own food (2M-A)
I have a guilty pleasure for Foster Farms GF Corn Dogs. (3K-C)
Usually gluten free bread, waffles, sometimes donuts, and pizzas. (4-LJ)
We use sausage, gluten free bread, pizza, and pastries. Most gluten free specialty foods are only occasional. (5M-S)
73. How many ready to eat snacks or meals do you incorporate into your diet and what are they?
Not many, every so often siete brand chips (2M-A)
I eat a lot of cheese (3K-C)
Mostly granola bars. chips, and popcorn for snacks. (4-LJ)
Not many. Crackers, chips, cheese, and fruit are probably the most common. (5M-S)
74. How many meals do you make “from scratch” and what are they?
Most of my meals, just rice or noodles, cooked in pot with carrots or other misc vegetables (2M-A)
Stuffed chicken breasts and mashed potatoes. (3K-C)
Not often, but usually gluten free pasta dishes. I also cook Thanksgiving dinner totally gluten free. (4-LJ)
Most of my dishes. Chili, Mexican, Cajun food, etc (5M-S)
Questionnaire Results GF and the Media
These are questionnaire results in regards to the media as well as audience responses to media
MEDIA
91. How do you feel about public treatment and response of the gluten free diet on social media?
It can be a joke for some people. I’ve gotten good at rolling my eyes (3K-C)
92. How do you feel about the treatment and response of the gluten free diet in mass media?
Again: people make a lot of lame, uninformed jokes at the expense of people with CD. (3K-C)
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?
? The minuscule amount of coverage I’v seen ignores the struggle of the disease with poor humor. It does not affect my daily life. (3K-C)
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.
It’s disheartening to have a disease that is mocked. It’s not fun to read or hear those things, but I don’t spend a lot of time thinking about the things that are said by ignorant people. (3K-C)
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?
FROM THE CELIAC JOURNEY WEBSITE
Glutened shows how those with food allergies and intolerances often silently suffer with their disability, and how this can be exacerbated by those around them who do not necessarily appreciate their limitations, how those with Celiac Disease often just say “thanks, but no thanks” to offers of food and fun, and what reasonable accommodations could be made to allow them to be included in a meaningful manner. (Bari, The Celiac Journey Feb 2021)
96. 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.
97. 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
98. 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
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.
FROM THE CELIAC JOURNEY WEBSITE
Since Jax was diagnosed with Celiac Disease, I have often thought of making a film like Glutened looking at the world through a child’s eyes who cannot eat pizza and cake at friends’ birthday parties; who cannot eat soft pretzels with his teammates at soccer practice; who cannot readily order food in his school’s cafeteria like his classmates; who cannot fully partake in the joy associated with the spontaneity of food in everyday life; who has to bring his own food often when we travel or eat out; who just watches other children enjoy foods that he cannot have; who walks through the supermarket and sees “eye candy” with all of the foods that he cannot eat; etc. (Bari, The Celiac Journey Feb 2021)
Please expand on anything else you would like to discuss. Thank you again for your valuable input!
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?
No. (2-MS)
No (3-PB)
No (1-TW)
2. Do you eat gluten free and why?’
I don’t. Personally, I just have a preference towards food with gluten. I think the
taste tends to be better towards food with gluten, but there are plenty of gluten
free substitutes that are good, and food doesn’t need gluten to taste good.
Do you know family or friends with a gluten related disorder?
Yes, my mom. (2-MS)
No (3-PB)
Yes, Partially, because of my wife’s celiac disease. (1-TW)
3. Do you know family or friends with a gluten related disorder?
Yes, my mom. (2-MS)
Yes, Michelle and her family (3-PB)
Yes, my wife and two of my stepchildren (1-TW)
4. Do you work in the food industry? If yes, what is your occupation?
No. (2-MS)
No (3-PB)
No (1-TW)
5. Have you seen jokes about the gluten free diet on social media or mass media? Please describe
Yes plenty of times. In some aspects, I think it’s fine, since some people try to put
on an aesthetic of being gluten free without having the disease, and that can be
pretentious at times. However, people with celiac are often conflated with those
who do it as an aesthetic preference, and so it becomes harder for people with it
to be taken seriously. (2-MS)
I have seen jokes about gluten free on social media, books, TV, in person. In fact, I was unaware of the severity of Celiac disease until I met Michelle. I had thought that “gluten intolerance” was mostly people who felt bloated after consuming gluten with the rise of seemingly everyone claiming they were gluten intolerant in the 2010-2018ish-era it seemed more or less a fad diet. (3-PB)
Yes (1-TW)
6. Have you seen information on social or mass media about Celiac disease and other gluten related disorders? Please describe.
Yes, I have learned a lot about it. (2-MS)
I have seen exactly zero information regarding Celiac disease. (3-PB)
Yes. (1-TW)
7. How do you feel about public treatment and response of the gluten free diet on social media (Twitter, Facebook, Instagram, YouTube, Tik Tok, etc)?
Back in the 2016-18ish era, it was largely seen as a cultural fad and there were a
lot of problems with the framing of the issue, but I think now most people treat the
issue with a lot more respect and nuance. (2-MS)
I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. (3-PB)
It is under represented and there is lots of false information (1-TW)
8. How do you feel about the treatment and response of the gluten free diet in mass media (news outlets, magazines, TV shows, Hulu, Netflix, etc)?
It’s mixed. There are gonna be a lot of different takes on the issue, so it’s hard to
parse everything out, but I will say most people would be supportive if you talked
with them face to face. (2-MS)
I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. I feel absolutely shocked at the level of ignorance regarding this discussion in both social and mass media. (3-PB)
I think its getting better but much improvement is needed. (1-TW)
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?
How does this public treatment affect your daily life and habits?
Lately, I think it’s mostly fine, apart from a few celebrities who are stuck in the
2016 era and still think it’s a fad. I think the issue is treated with a lot more
respect. (2-MS)
I think that the jokes of general public perception regarding gluten intolerance are due mostly to the scores of fad diets impacting people who actually are celiac. A boy who cried wolf syndrome. Its horrific really. I can’t count the amount of people who went on a gluten free fad diet because media convinced them gluten was the source of weight gain. The same people who aren’t Celiac or Gluten Intolerant claiming to be so degrade the public knowledge of what being Celiac or actually gluten intolerant is like. (3-PB)
It has not helped at all. Celiac disease is a grassroots issue. News coverage is not helping. It is a gtass roots issue of people that have healed each other from people that have to worry about getting cross contaminated. Because the FDA is not doing shit. (1-TW)
10. 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 people that have a gluten related disorder (Celiac or otherwise)? Please expand on this.
Again, pretty mixed. Some jokes critique people who insincerely do the gluten
free diet as a way of showing off, but there are still instances of people with
celiac being roped into that group, and gives leeway on how seriously people
treat the issue, which inevitably causes more people with celiac to be,
essentially, poisoned. (2-MS)
Honestly I’ve not heard any jokes regarding GF diets in a number of years. It never really impacted me. (3-PB)
Please expand on this more thoroughly. The jokes are discouraging and immature. (1-TW)
11. Watch this short documentary film, 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?
I think the restaurant bit in the end really stood out to me. When I ate at a
restaurant with my mom, I would get so worried if she would be sick the next day,
and I had flashbacks to that when I was watching the end clip. (2-MS)
Video 1 – honestly after witnessing Michelle’s struggles with celiac, this would probably be my reaction as well.(3-PB)
Well represented of people with celiac. I can imagine being her husband next to she when she feels sick. My only problem with the documentary is that it doesn’t show other people who support loved ones with Celiac disease. For the people who support and know the severity of Celiac disease, I was missing scenes that it should have. If she had people helping her and showing some of the real trauma of the disease. (1-TW)
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.
Lots of these fall into the same issue I said earlier, this roping in of people who
have celiac with the fad some people had at the time, and mocking both is the
same group. I didn’t have issues with all of them, but most of them had that
problem. (2-MS)
People treat this as a fad diet, ignoring the fact that Celiac disease is a very serious condition. Again, I think the ignorance was birthed by the scores of people who appropriated GF as a fad diet. This hurts the people trying to spread awareness of the actual Celiac community (3-PB)
Although funny, most comedians are very ignorant towards Celiac disease as are most food staff and underpaid restaurant workers. I noticed that there were no peanut jokes when it came to jokes about allergies because they know better than to joke about peanut allergies. The last one stuck out to me, that he was saying that people didn’t really understand what “glutens” are showing that he feels like gluten free is a trend and is not considering Celiac disease. The ice cream one thoughts – he was probably the most ignorant of everyone…you don’t eat Cadillac, you eat ice cream….and yes, they put gluten containing additives in things that you wouldn’t think (like ice cream) and it really affects those with Celiac disease (1-TW)
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
I thought that was funny, I think it properly frames the humor in a way that shows
how much eating gluten free can suck sometimes, without attacking people with
celiac. (2-MS)
Regarding the awareness of Celiac disease, it is absolutely shocking this level of ignorance that exists. It seems so obvious that if we can have food allergies like nuts, dairy on an ingredient list, why not gluten? An actual national accreditation for GF foods. Knowing my friend has really opened my eyes regarding the insane level of mislabeling and misrepresenting GF products This video perfectly sums up the public perception of the Gluten Free Diets. (3-PB)
I think his stand up routine was basically laugh so you don’t cry after being diagnosed with Celiac disease. He clearly was upset about the diagnosis and it is a hard blow even for spouses like me because I cannot cook gluten at home and by taking a risk of eating gluten. Lifestyle changes are hard, but they are manageable. (1-TW)
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
I think it was nice, it provides info on a medical issue, how it affects people, and
what people are advocating to fix it. (2-MS)
I feel that the times are changing and although it has been slow in the past years, Im happy to see that government steps and mass media acknowledgement has begun. I feel encouraged and like there is more to do but overall, I am happy to see this heartwarming video. (1-TW)
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.
I think that treating celiac like the medical issue it is would be the most effective
way of getting people to take it seriously, the same way people take those who
are lactose intolerant seriously. I don’t know any resources at the top of my head,
but a wikipedia search could be a good starting point for those trying to learn
more. (2-MS)
This seems like something people should be educated about at an early age. (3-PB)
I would like for it to be categorized like any other food allergy (shell fish, peanuts etc). (1-TW)
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.
I would like it just as much as I like diversity in everything else. I will say that
trying to get comedians to treat the issue with a little more respect is definitely
something to focus on. (2-MS)
I think Disney would really help if they had a group of characters with food allergies and Celiac. (1-TW)
July 24, 2022