Celiac Lifestyle habits

[SayHeySarah]

Hi there, Friends,

I am a current Nutrition Graduate student/Dietetic Intern and I am doing a research project on the lifestyle and social media habits of those with Celiac Disease. Having Celiac disease myself, I am passionate in learning more about the disease that ties us all together. If any of you have the time, I would love to hear your responses to the questions below. Feel free to answer as few or many responses as you would like. Also, if you prefer not to post these responses in public, feel free to privately message them to me. Thank you! Have a great day!

When were you first diagnosed with celiac disease?

How has your life changed since you were diagnosed?

Has your quality of life improved since your diagnosis?

How has CD changed your relationship with family/friends/support group?

How do the stigmas of the GF diet affect your own diet?

How has CD changed how you think about yourself?

How has your healthcare team supported you?

Do you currently belong to a CD support group? If so, what are they?

Where you generally obtain your health information?

Which social media sites do you frequent the most?

Any additional information I should know?

[Hidden]

Hi Sarah, thanks for joining us and I for one think it's great having a coeliac and a health professional on board as will other members, so good luck with your questionnaire and I imagine that you will get a good response to it.

And I look forward to hearing your views on various aspects of being a coeliac as gluten affects 'us' in many ways and lots of us are very interested in nutrition, so you're in good company on here.

Jerry

[Jacks]

Not wanting to be a killjoy but wouldn't taking research from here be meaningless. Thinking rules regarding research.

[Hidden in reply to Jacks]

Hi Jacks, I invited Sarah to post this on here as in my opinion this is for her course work and not for financial gain and as Sarah is a coeliac and a health professional I see having her as a member as a bonus for obvious reasons.

In the past I posted this:

healthunlocked.com/glutenfr...

We don't have active admin on here so we don't have polls or surveys so in my opinion this is in everybody's best interest and members do not have to reply.

So I apologise if any member objects to it and take full responsibility and stand by my invitation to Sarah and I genuinely feel that many members will want participate and I think that it is what we as coeliac want, another coeliac health professional who is interested in our personal views experiences rather than just quoting codex...

HU sites are for collating medical info and GFG is unique in that our cure is food so we chat about food, recipes and nutrition and Sarah is a coeliac studying nutrition so maybe I should have made this clear in the first instance and again I welcome Sarah and her questionnaire.

So if any members want to complain to HU then blame me and I stand by my invitation to her.

Jerry

[Jacks in reply to Hidden]

Hey I'm not complaining - I'm just abrupt! When I left the forces (due to CD and not my choice) I completed a social sciences MSc, (nicely paid for by the government) and one of the things they really push is the validity of research methodology in qualitative research.

Perhaps I'm thinking the tutors would need that kind of discipline. I wouldn't have wanted to do a study only for it to be dismissed.

I think the Admin did a similar questionnaire some years ago - dunno if that's still around 'cause that'd have been be easy enough to lift info off.

[Hidden in reply to Jacks]

Well I haven't been chucked off the site LOL and I remember the pork pie fiasco where I invited the maker of amazing pies to post and it was full on advertising...but like I said to Fiona I have these brainwaves...

[SayHeySarah in reply to Jacks]

Hello Jacks,

This is in no way official research but simply a survey used to gain a greater understanding of the Celiac DIsease population, for a health communications class in my Graduate Program. The information gaining from this project, will not be shared beyond this assignment and no real names will be disclosed.

Thank you for the concern,

Sarah

[SilverDreamMachine]

Hi Sarah,

-9 years ago

-live a much healthier life as it was the catalyst to me eating healthier.

-No, I'm asymptomatic

- not at all.

-No.

- I now understand what my body needs and how much 'rubbish food' I was eating before diagnosis.

-yearly dieticians apprasial. This involves blood test and then a phone call to check all ok.

-Healthunlocked.

-internet.

-none.

Goog luck with your project.

Peter

[SayHeySarah in reply to SilverDreamMachine]

Thank you for your response, Peter! Much appreciated!

[Katepots]

Hi Sarah,

I have not been diagnosed with celiac disease but I do have all the symptoms. My GP is pretty useless so I have been discovering what's wrong(and putting right) myself. I have Hashimotos Thyroditis which means I have to be gluten, casein and soy free and is pretty much the same as celiac. So maybe we are all celiac just never diagnosed!

It may be interesting for your research to look at the link between the two?

I'll answer your questions but as I'm not officially celiac they may not count!

So had the problem for years but have only been gluten free for about a year.

Life was pretty hard but better now I've adjusted my diet.

Friends and family don't get it, they think I'm a pain with my eating. Lots of raised eyebrows and jibes. I feel unsupported.

On the plus side I've lost weight and feel healthier. I have a really good understanding now of the gut. I eat far more healthily 😀 Also love my body a lot more.

Heath unlocked Thyroid UK

And gluten Guerrillas.

No support from healthcare team

Health info from online sources

I'm on Facebook.

Hope some of this is interesting.

Kate

[SayHeySarah in reply to Katepots]

Thank you so much Kate! I appreciate your response.