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Old 22.08.2017, 11:44
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Seeking to interview people with celiac disease

Hi,

I am looking for people affected by celiac disease or extreme gluten intolerance for a 15-20 minute interview about food preferences and challenges. All information will be confidential (we can also do it on the English Forum PM to remain anonymous).

Offering a gutschein to Migros or Coop in return.

If you are interested to take part please PM me.

Thanks!
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Old 22.08.2017, 11:51
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Re: Seeking to interview people with celiac disease

Hi digitsclimb. Your enquiry is so vague, you might have problems getting feedback.

If you actually provide the reason for your data collection (magazine article, school work, scientific study, restaurant enquire, whatever), you might get more results. People are wary about sharing personal information to strangers (as they should be) even with promises to keep in confidential.
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Old 23.08.2017, 10:57
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Re: Seeking to interview people with celiac disease

Thanks for your input. We are doing research for a food blog post. No personal details are required. All questions are general questions about experiences with finding food that appeals to the respondents tastes.
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Old 23.08.2017, 11:31
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Re: Seeking to interview people with celiac disease

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Hi,

I am looking for people affected by celiac disease or extreme gluten intolerance for a 15-20 minute interview about food preferences and challenges. All information will be confidential (we can also do it on the English Forum PM to remain anonymous).

Offering a gutschein to Migros or Coop in return.

If you are interested to take part please PM me.

Thanks!
Define "extreme gluten intolerance", because if it's not genuine coeliac disease, it doesn't exist.
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Old 23.08.2017, 12:45
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Re: Seeking to interview people with celiac disease

Um ... not sure why you'd say that. It's entirely possible to be severely gluten intolerant and yet not be celiac. My neighbour, for one. My MIL another.
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Old 23.08.2017, 12:58
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Re: Seeking to interview people with celiac disease

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Um ... not sure why you'd say that. It's entirely possible to be severely gluten intolerant and yet not be celiac. My neighbour, for one. My MIL another.
That would be my understanding too. One is an auto-immune response to the presence of gluten in the small intestine. The immune system attacks the lining of the small intestine, causing inflammation which eventually leads to malabsorption in the gut.

The other is a broader allergic response to the protein/s of gluten containing foods, and could cause a range of other 'allergy' type symptoms such as exzema, hives, breathing difficulties, itching, inflammation of other parts of the body...
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Old 23.08.2017, 13:06
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Re: Seeking to interview people with celiac disease

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Um ... not sure why you'd say that. It's entirely possible to be severely gluten intolerant and yet not be celiac. My neighbour, for one. My MIL another.
Whether it is caused by gluten or other wheat-related substances is hotly debated at the moment, whereas true coeliac is a known autoimmune disorder related to a hypersensitive reaction to gluten.

Edit: Fair enough, to say "it doesn't exist" is being a little harsh, but the pathogenesis is by no means clear, nor is the relation to gluten itself.
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Old 23.08.2017, 13:14
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Re: Seeking to interview people with celiac disease

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Whether it is caused by gluten or other wheat-related substances is hotly debated at the moment, whereas true coeliac is a known autoimmune disorder related to a hypersensitive reaction to gluten.

Edit: Fair enough, to say "it doesn't exist" is being a little harsh, but the pathogenesis is by no means clear, nor is the relation to gluten itself.
The last specialist I spoke to about this said that they had no idea, research was ongoing and to keep an eye on the press for the next few years.

Not sure whether this was NHS speak for "There's nothing wrong with you" or "I'm sorry, I haven't a clue".
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Old 23.08.2017, 13:27
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Re: Seeking to interview people with celiac disease

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The last specialist I spoke to about this said that they had no idea, research was ongoing and to keep an eye on the press for the next few years.

Not sure whether this was NHS speak for "There's nothing wrong with you" or "I'm sorry, I haven't a clue".
Probably a bit of both. Rather than "the press", I think I'd rather keep my eye on scientific literature.
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Old 23.08.2017, 13:37
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Re: Seeking to interview people with celiac disease

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Probably a bit of both. Rather than "the press", I think I'd rather keep my eye on scientific literature.
I think that's what she actually said.

I've got a problem with gluten and it's not coeliac (I've had an endoscopy and tissue samples taken which have proved negative).

Not sure what to do apart from avoid gluten. I've done double-blind tests and lots of other things (the fact that it was gluten was discovered on various elimination diets).

All this was long before gluten-free became a fad.

If you think this was a lifestyle choice for me then you have got to be joking - I love (loved) pies, pastries, bread etc and of course beer and the high-cost and bad taste of gluten-free products is hardly an incentive.

The trigger for mine (whatever it is) was a virus (epstein-barr virus). Before that I was fine.
The symptoms aren't vague either - I was so nauseous that I was vomiting everyday - normally in the morning, I was constantly tired and my lymph glands were swollen. I was losing weight too.
There were other symptoms too.

I'm in no way a hypochondriac - I've been to the doctor's only once in fifteen years and that was only to get a sick note for flu.
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Old 23.08.2017, 18:20
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Re: Seeking to interview people with celiac disease

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I think that's what she actually said.

I've got a problem with gluten and it's not coeliac (I've had an endoscopy and tissue samples taken which have proved negative).

Not sure what to do apart from avoid gluten. I've done double-blind tests and lots of other things (the fact that it was gluten was discovered on various elimination diets).

All this was long before gluten-free became a fad.

If you think this was a lifestyle choice for me then you have got to be joking - I love (loved) pies, pastries, bread etc and of course beer and the high-cost and bad taste of gluten-free products is hardly an incentive.

The trigger for mine (whatever it is) was a virus (epstein-barr virus). Before that I was fine.
The symptoms aren't vague either - I was so nauseous that I was vomiting everyday - normally in the morning, I was constantly tired and my lymph glands were swollen. I was losing weight too.
There were other symptoms too.

I'm in no way a hypochondriac - I've been to the doctor's only once in fifteen years and that was only to get a sick note for flu.
This is pretty close to my situation. To save arguments, I usually describe myself as coeliac, but the blood test (13 years ago) came back negative, and I was simply unwilling to put myself through the misery of eating bread again for six weeks just to prove what I already knew, which is that eating bread hurts my innards!

In my case, I discovered it by accident. I'd always had dodgy guts, going back decades. A short spell on the Atkins diet and whoosh! I suddenly felt normal for the first time ever! I ate some rice - no problem. Ate some potatoes - still no problem. Ate a piece of bread and there it was again.

Just like Tom1234, I've been involved in (unwitting) double blind test: my poor old dad once tried out a gluten-free recipe and was proud as punch that he'd managed to put it all together - until twenty minutes after the meal when the symptoms began. A search through the kitchen bin revealed the wrapper of an Oxo cube he'd thrown in at the last minute. I think he felt worse than I did!

Symptoms for me are extreme gastro-intestinal irritation (like how your skin feels when you have the flu, but inside), very uncomfortable bloating, then, as the offending item (which can quite literally be nothing more than a crumb) moves through the system, all the excitement of diarrhoea with all the disappointment of constipation. My life is pretty miserable for at least 24 hours, these days closer to 48.

I quite honestly cannot understand why anyone would give up gluten for "lifestyle" reasons, and get a bit irritated when people say they're gluten-intolerant "but I can have a bit of cake now and then" as they really do undermine those of us who can't enjoy a bit of cake ever. I suppose we ought to be grateful to them for creating a market for gluten-free products (which, incidentally, are mostly dreadful).

So yeah, sure there might not be any scientific proof of the existence of non-coeliac gluten intolerance, but my guts would beg to differ. And who wants to argue with my guts?

To the OP: Sure I'll do your survey. Drop me a PM and I'll see what I can do.
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Old 23.08.2017, 23:10
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Re: Seeking to interview people with celiac disease

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Um ... not sure why you'd say that. It's entirely possible to be severely gluten intolerant and yet not be celiac. My neighbour, for one. My MIL another.
Gluten intolerance of any degree is OK here. What we are not seeking are people who choose to avoid gluten by choice. It should be impacting well being.

Thanks
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Old 13.10.2017, 13:14
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Re: Seeking to interview people with celiac disease

Hi, if you're still looking for people with coeliac disease, I can help
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