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)