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)