How many of us are paleo/primal?

Wantobe · 04-10-2010 11:39PM

Sapsorrow wrote: »

I hate having to pretend I'm a diagnosed celiac when I'm trying to get help in a cafe or restaurant, there's not really any other way to go about saying why you don't eat gluten, bread or wheat in those kinda situations but I feel stupid saying it.

Red Cortina wrote: »

I feel the same way:)

As a diagnosed coeliac I don't believe that anyone should pretend to be a coeliac when they are not. I feel it trivialises something that I HAVE to live with. If you don't want to eat gluten or carbs or wheat, then just say that- it's your choice. But don't pretend to have a disease with potentially life threatening consequences if you eat gluten.

El_Dangeroso · 04-10-2010 11:44PM

Wantobe wrote: »

As a diagnosed coeliac I don't believe that anyone should pretend to be a coeliac when they are not. I feel it trivialises something that I HAVE to live with. If you don't want to eat gluten or carbs or wheat, then just say that- it's your choice. But don't pretend to have a disease with potentially life threatening consequences if you eat gluten.

Well it's not really a choice for me. I have severe cramps when I eat gluten, I'm not trivialising celiac disease. You guys are canaries in the mine for the damage that gluten can do. You should be happy that there are more people out there asking for gluten free options, makes it an easier world for you to live in.

Wantobe · 04-10-2010 11:48PM

El_Dangeroso wrote: »

Well it's not really a choice for me. I have severe cramps when I eat gluten, I'm not trivialising celiac disease. You guys are canaries in the mine for the damage that gluten can do. You should be happy that there are more people out there asking for gluten free options, makes it an easier world for you to live in.

I didn't say I felt you shouldn't ask for a gluten free option- if you read what I posted. I said I didn't feel anyone should pretend to have a disease they don't. Big difference.

El_Dangeroso · 05-10-2010 12:44AM

Wantobe wrote: »

I didn't say I felt you shouldn't ask for a gluten free option- if you read what I posted. I said I didn't feel anyone should pretend to have a disease they don't. Big difference.

Why not? If it gets them what they need. Most people will not take the request of a gluten-free meal seriously if you are not celiac. Gluten intolerance makes you look like a fussy eater, but no one will think twice when you say celiac. Wish it were different but it isn't.

Wantobe · 05-10-2010 08:54AM

Why do you think people will take coeliac disease seriously but not gluten or food intolerence? Is it because one is an actual medically diagnosed disease with potentially life threatening consequences? And the other, er, isn't?

The coeliacs in my family have died young. My grandmother died in her early50s leaving a very young family- we don't know if she was a coeliac as she was never diagnosed but we think she probably was. My mother was a coeliac, she's dead. Two of my aunts were coeliac- one is dead, the other is in and out of hospital on an ongoing basis. My sister and I are both coeliacs. My sister was in hospital for about three months 16 years ago when she dropped down to 5 stone as she couldn't get her condition under control. She's fine now, but she's very careful.

I'm fine too, I've been in and out of hospital but thank god, nothing serious. I worry about all the auto immune disorders I could easily develop because of my disease but I'm very, very careful about what I eat. I don't eat in restaurants if I don't know for sure they understand the coeliac condition. If I go to a restaurant and get a roll of the eyes because I've asked for something gluten-free and I get the attitude that they think I'm on a fad diet- I don't eat there, I can't take the risk. I rarely eat out. It's not about feeling good, or losing weight, it's not about my skin or what people think. It's about staying alive and having a decent life expectancy.

So yeah, hearing someone say that they are pretending to have coeliac disease is infuriating to me and I find it hard to credit that you don't understand that. It's a bit like the signs in France in a disabled parking space- 'Si you prenez ma place, prenez aussi mon handicap.' If you take my place, take my handicap too.

--Kaiser-- · 05-10-2010 09:14AM

Wantobe wrote: »

So yeah, hearing someone say that they are pretending to have coeliac disease is infuriating to me and I find it hard to credit that you don't understand that. It's a bit like the signs in France in a disabled parking space- 'Si you prenez ma place, prenez aussi mon handicap.' If you take my place, take my handicap too.

Have you considered that maybe if more people are claiming to be coeliac (falsely or otherwise) that restaurateurs will think more about gluten free options and the like? I'm seeing more and more Gluten-Free options in supermarkets and in restaurants as people becoming more and more aware of the condition, surely this is a good thing?

I don't understand the holier-than-thou attitude either. I know people who stopped eating wheat because it made them feel sick, do they not have a right to be able to exclude this substance from their diet without having to be diagnosed a coeliac?

Red Cortina · 05-10-2010 09:33AM

Wantobe wrote: »

As a diagnosed coeliac I don't believe that anyone should pretend to be a coeliac when they are not. I feel it trivialises something that I HAVE to live with. If you don't want to eat gluten or carbs or wheat, then just say that- it's your choice. But don't pretend to have a disease with potentially life threatening consequences if you eat gluten.

I was diagnosed as having irritable bowel syndrome which I guess is the one size fits all response that gastroenterologists give to folks who come to them with cramps and diarrhea and don’t really know what is wrong with them. And while not trying to trivialise your condition, which by the way I am very sorry to hear about, I feel that the diagnosis which I received and the advice given to me (ie take some anti-diarrhea medication) certainly trivialised the condition which I have.
I don’t think that it is normal to be toilet-aware when you are 22 years of age, worried about having ‘an accident’, to feel sapped and exhausted on a general run of the mill day just because you are after sitting through bouts of cramps and are after running to the toilet for the millionth time with diarrhea. The degree to which my body reacts to gluten might not be as severe as the degree to which your body reacts to gluten. But it certainly reacts in a highly distressing way and one which is not normal. Therefore I will do anything I can to avoid all the reactions which I list above and the many other responses which I am sure my body undergoes when eating gluten such as inflammation, mal-absorption of nutrients and the subsequent implications of this.

El_Dangeroso · 05-10-2010 09:41AM

Wantobe wrote: »

Why do you think people will take coeliac disease seriously but not gluten or food intolerence? Is it because one is an actual medically diagnosed disease with potentially life threatening consequences? And the other, er, isn't?

So what, we're supposed to chow down on gluten even though it depletes our vitamin D, damages our gut and sends our blood sugars very high because no one takes it seriously?

I really don't understand why you're infuriated, I really don't. I want to understand, I haven't ever personally said I was celiac but I can understand why people would. Who's to say that someone who is gluten intolerant couldn't end up celiac down the line if they continue to barrage their gut with something that causes it injury.

Wantobe · 05-10-2010 09:51AM

Don't put words in my mouth.

How many times do I have to repeat that I do not have any problem with anyone requesting a gluten-free, wheat-free, low carb, whatever they want meal. I've now said it three times- that enough?

My problem- and I repeat again- is with people falsely claiming to have coeliac disease. If you don't get that, I can't make you.

Wantobe · 05-10-2010 09:54AM

--Kaiser-- wrote: »

Have you considered that maybe if more people are claiming to be coeliac (falsely or otherwise) that restaurateurs will think more about gluten free options and the like?

Not in my name. I don't care what you eat, I have no problem with someone discovering that certain foods don't suit them and avoiding them. But don't claim to have a disease if you don't have it. That really saddens me.

Sapsorrow · 05-10-2010 10:11AM

This holier than thou attitude is ridiculous, who on earth are we hurting exactly? People think you're being a fussy eater and general pain in the butt when you ask them if there's eggs, dairy and then gluten or wheat (in my case) in a menu option and they ask you if you're a a celiac and you say no! The last thing I want when I'm out for breakfast or lunch is getting negativity like that from the waiting staff. For all I know I AM a celiac, I haven't been diagnosed and I've never tried to be, because I didn't need to, I found out myself how gluten was making me sick. God knows I've been pretty damn sick and nearly hospitalized several times in the last few years and the best thing I ever did for my health was get off gluten. I understand that gluten has really damaged the health of your family but guess what it's really damaged mine too. I spent the first 4 years of my twenties in literally daily pain with stomach cramps, diarrhoea, constant headaches (waking up with them in the morning and going to bed with them at night), lethargy and nutrient malabsoprtion/deficiencies and spending hours in bed everyday over it, I was on several types of medications and was taking a LOT of painkillers so I could still get through my science degree. Who's to say it may not have affected my life expectancy had I not cut the crap out? You're sick, I'm sick, it's sucks and it's hard for us to life a gluten-free life but I don't see why you should get so irritated by something so trivial. Geez, there are so many things to get 'infuriated' about in life, get over it!

Wantobe · 05-10-2010 10:22AM

If you have serious medical issues, then why don't you go to a doctor, a specialist, get tested, take your own health seriously enough to get it checked by specialists? If you don't want to, fair enough, but don't pretend to have a disease to make your life easier in a restaurant.

You should fight your own fight. If you want restaurants to take food intolerences seriously, then you keep on requesting gluten-free, egg-free, dairy free meals.

I and other coeliacs had to do it for ourselves. 15 years ago when I was first diagnosed a coeliac there was no such thing as a tesco-own range, any food I wanted had to be ordered in the pharmacy and no restaurant had ever heard of the disease. I carried a card from the Coeliac Society of Ireland and a little hand book, and I gave it in to supermarkets and restaurants here and abroad. I asked and asked and asked. Now over a decade later things are better.

By pretending to have a disease you don't, to me you are trivialising both my condition and yours- whatever it is.

El_Dangeroso · 05-10-2010 10:23AM

Wantobe wrote: »

Don't put words in my mouth.

How many times do I have to repeat that I do not have any problem with anyone requesting a gluten-free, wheat-free, low carb, whatever they want meal. I've now said it three times- that enough?

My problem- and I repeat again- is with people falsely claiming to have coeliac disease. If you don't get that, I can't make you.

Hang on, don't get upset about it. I don't give a flying fiddle about someone claiming to have any disease when they don't, I just don't see the point in getting upset about it. It really doesn't affect you one way or the other.

Sapsorrow · 05-10-2010 10:27AM

I was diagnosed with IBS among other things. A very dear friend of mine has been suffering with celcias for some years now, he's had part of his colon removed, had to give up his very active hobbies, is in crippling pain and very depressed as a result. I am under no illusions about how difficult celiacs is to live with and I'm not trying to imply I'm as sick as you or he is by any means and I would never trivialise it. You see it that way but I doubt many others would if they understood the situation.

Sapsorrow · 05-10-2010 10:31AM

Wantobe wrote: »

If you have serious medical issues, then why don't you go to a doctor, a specialist, get tested, take your own health seriously enough to get it checked by specialists?

I did look into it and spoke to several doctors but I was a student and couldn't afford the tests and neither could my family (not that I asked them but I knew they couldn't). Excuse me for not taking my health seriously enough. :rolleyes:

--Kaiser-- · 05-10-2010 10:31AM

Wantobe wrote: »

Not in my name. I don't care what you eat, I have no problem with someone discovering that certain foods don't suit them and avoiding them. But don't claim to have a disease if you don't have it. That really saddens me.

You're treating coeliac disease like it's a disability. It's not. Being blind, being paraplegic, those are disabilities. You just have to watch what you eat. Grow up.

Sapsorrow · 05-10-2010 10:32AM

--Kaiser-- wrote: »

You're treating coeliac disease like it's a disability. It's not. Being blind, being paraplegic, those are disabilities. You just have to watch what you eat. Grow up.

Well said, pretty sums it up.

Wantobe · 05-10-2010 10:38AM

Depression is quite common in coeliacs, especially those who have remained undiagnosed for some time. Another close relative of mine committed suicide shortly after being diagnosed as a coeliac. It's because coeliacs who don't stay on a gluten free diet don't absorb the necessary vitamins and minerals which we need and therefore clinical depression is quite common- or so my consultant says. It's actually one of the things I'm most afraid of. Another of my relatives who is coeliac is on anti-depressants but they're not working very well, she's had two suicide attempts so far.

If you have IBS, then that's your condition, and why on earth would you rather tell someone in a restaurant that you are a coeliac rather than you have IBS? By telling them, you are informing them, you will make things better for others with IBS. As I said before, fight your own fight.

Wantobe · 05-10-2010 10:39AM

--Kaiser-- wrote: »

You're treating coeliac disease like it's a disability. It's not. Being blind, being paraplegic, those are disabilities. You just have to watch what you eat. Grow up.

Oh right, thanks for that. :rolleyes: If you don't like what you hear, attack is the best form of defence, right? Attack the post, not the poster.

Wantobe · 05-10-2010 10:41AM

Sapsorrow wrote: »

I did look into it and spoke to several doctors but I was a student and couldn't afford the tests and neither could my family (not that I asked them but I knew they couldn't). Excuse me for not taking my health seriously enough. :rolleyes:

I was a student when I was diagnosed, had it done under the public health system, didn't cost me a penny.

Red Cortina · 05-10-2010 10:57AM

Wantobe wrote: »

Depression is quite common in coeliacs, especially those who have remained undiagnosed for some time. Another close relative of mine committed suicide shortly after being diagnosed as a coeliac. It's because coeliacs who don't stay on a gluten free diet don't absorb the necessary vitamins and minerals which we need and therefore clinical depression is quite common- or so my consultant says. It's actually one of the things I'm most afraid of. Another of my relatives who is coeliac is on anti-depressants but they're not working very well, she's had two suicide attempts so far.

When I ate gluten and suffered from diarrhea all the time, I had all the food that I ate whizzing through my guts at the rate of knots and so most definitely did not absorb the necessary vitamins and minerals which I needed. And I am gluten intolerent.

Wantobe · 05-10-2010 11:07AM

Red Cortina wrote: »

When I ate gluten and suffered from diarrhea all the time, I had all the food that I ate whizzing through my guts at the rate of knots and so most definitely did not absorb the necessary vitamins and minerals which I needed. And I am gluten intolerent.

And? I'm not trying to deny that you are gluten intolerent, I'm certainly not trying to deny you the right to eat a gluten-free diet.

El_Dangeroso · 05-10-2010 11:13AM

Wantobe wrote: »

Depression is quite common in coeliacs, especially those who have remained undiagnosed for some time.

Depression is associated with IBS too, there's a definite link between gut health and the mind.

Please don't feel attacked. It's not like people are going around saying celiac is no big deal, but most people understand the absolute necessity to be gluten free when celiac. That's not so clear with IBS. Believe me when I say how sick I get when I even eat tiny amounts of gluten. Please don't trivialise that either.

Saying that you're celiac is shorthand for 'I really need to be gluten free'. It would be great if everyone took it seriously when you say gluten intolerant but they don't.

I have a great debt of gratitude to celiacs who fought to make sure the world is a little more gluten-free friendly, although I think you'd agree more needs to be done, and in that instance more people asking for gluten free options helps that.

Wantobe · 05-10-2010 11:23AM

I'm not trivialising IBS. But I do feel that if you have IBS, then that's what you say in a restaurant, not that you have coeliac disease. And believe me, there are still plenty of staff in restaurants and cafes who haven't heard of coeliac disease. I actually find that although Ireland has a high incidence of coeliac disease that one can get better service in restaurants on the continent. That's because waiters and other restaurant staff in other countries like Italy and France are trained for their job- it is actually a career there rather than a part-time fill-in job like it often is here. I carry a Coeliac Society card in French and often hand it in in restaurants over there where they take it very seriously. Here, it's more hit and miss.

The more you demand food to suit your condition, the better it gets for you and others with IBS. But as I said before, by all means I have no problem with people asking for gluten free meals in restaurants and I do know that having to explain a medical condition is tiresome at the least and embarrassing at times ( that's why I don't eat out that much anymore unless I know the restaurant). But the more people who do it the better it gets for others.

El_Dangeroso · 05-10-2010 11:29AM

Wantobe wrote: »

I'm not trivialising IBS. But I do feel that if you have IBS, then that's what you say in a restaurant, not that you have coeliac disease. And believe me, there are still plenty of staff in restaurants and cafes who haven't heard of coeliac disease. I actually find that although Ireland has a high incidence of coeliac disease that one can get better service in restaurants on the continent. That's because waiters and other restaurant staff in other countries like Italy and France are trained for their job- it is actually a career there rather than a part-time fill-in job like it often is here. I carry a Coeliac Society card in French and often hand it in in restaurants over there where they take it very seriously. Here, it's more hit and miss.

The more you demand food to suit your condition, the better it gets for you and others with IBS.

I'm sorry, call me thick, but I still don't understand the insult over saying something to a waiter. Really, what are the consequences, why do you care?

I do find it shocking that some people don't know about celiac in this day and age. Although what's probably more shocking is how long it takes to diagnose someone as celiac and how many completely escape diagnosis until their gut is half destroyed. That is the type of thing that I would direct my anger at. Not people trying to do the best for their own health in whatever way they deem necessary.

Wantobe · 05-10-2010 11:33AM

Why would you pretend to have been diagnosed with coeliac disease when you don't? If you have IBS, then why not say that? If you're gluten intolerent, then why not say that? That is, if it comes up at all. In one way why should they question you anyway when you ask for a gluten free meal?

I've already explained my feelings on it and if you don't get it, you don't get it!

Sapsorrow · 05-10-2010 11:33AM

Wantobe wrote: »

I was a student when I was diagnosed, had it done under the public health system, didn't cost me a penny.

Diagnosing someone with IBS is a professional way of saying;

"well you're sick, that's for sure, and it's definately something wrong with your digestive system. But, we fecked if we know what it is. Well you're not quite sick enough to be worth spending anymore money on just yet, So if you get better by yourself great, if it gets worse and you get really really sick come back to us and maybe we'll fork out on some allergy/intolerance test and a colonoscopy for you. Or maybe you can get a loan out to pay for them yourself if you really want them? Have you tried peppermint tea? That might work, oh and you should probably try and relax more. If you like we can prescribe you some anti-depressants, that might help the stress. "

So ya that's why I didn't get it paid for. Go the public health system! :rolleyes:
I think you're forgetting the point that celiacs is a degenerative disease, there's no clearly defined beginning and end to it. The damage to the villi is unoticable initially and usually symptomless until it becomes more severe. Then it may start manifesting as developing an increasing list of food intolerances, persistant diarrhoea, chronic headaches, wasting (although not that often), lethargy, nutrient deficiencies/malabsorption, depression (sound familiar IBS sufferers??) and then at some point you might get so sick (maybe ending up in hospital) that you get a colonoscopy and get diagnosed as Celiacs. For me, I got all those things and low and behold within a week of elminating every trace of gluten from my diet they magically disappeared after four years. You may be further down the path towards full blown Celaics but we're still on the same path regardless, as no doubt many other undiagnosed celicas/IBS sufferers etc. are.

Wantobe · 05-10-2010 11:42AM

Sapsorrow wrote: »

Diagnosing someone with IBS is a professional way of saying;

"well you're sick, that's for sure, and it's definately something wrong with your digestive system. But, we fecked if we know what it is. Well you're not quite sick enough to be worth spending anymore money on just yet, So if you get better by yourself great, if it gets worse and you get really really sick come back to us and maybe we'll fork out on some allergy/intolerance test and a colonoscopy for you. Or maybe you can get a loan out to pay for them yourself if you really want them? Have you tried peppermint tea? That might work, oh and you should probably try and relax more. If you like we can prescribe you some anti-depressants, that might help the stress. "

So ya that's why I didn't get it paid for. Go the public health system! :rolleyes:
I think you're forgetting the point that celiacs is a degenerative disease, there's no clearly defined beginning and end to it. The damage to the villi is unoticable initially and usually symptomless until it becomes more severe. Then it may start manifesting as developing an increasing list of food intolerances, persistant diarrhoea, chronic headaches, wasting, lethargy, nutrient deficiencies/malabsorption, depression (sound familiar IBS sufferers??) and then at some point you might get so sick (maybe ending up in hospital) that you get a colonoscopy and get diagnosed as Celiacs. For me, I got all those things and low and behold within a week of elminating every trace of gluten from my diet they magically disappeared after four years. You may be further down the path towards full blown Celaics but we're stillly on the same path regardless, as no doubt many other undiagnosed celicas/IBS sufferers etc. are.

Sounds like you had/have a lousy doctor. Or that you didn't push it enough or have support to help you do that. Because I was sick, I went to my doctor, I told her I suspected coeliac disease and she referred me for an endoscopy. End of. Or beginning of- whatever.

But what has all that got to do with my original point anyway? I don't care what you eat, or what meals you request. And if you think you're a coeliac I believe that you should get tested, but you have every right to do whatever you want.And god knows I wouldn't wish an endoscopy on anyone. I just believe that you shouldn't and shouldn't have to, lie about being a diagnosed coeliac.

You know, the irony is that I actually saw your blog a couple of days ago and was really interested in your paleo/primal diet. I actually discussed it with my husband the night before last- we eat a low-carb diet at present ( but not dairy or egg free), and try to be healthy and I thought you had a very strong message. I was thinking of trying this paleo/primal diet because I strongly believe that what we eat is so fundamental to our well being that we should all be better informed. That's actually why I clicked on this thread in the first place.

Sapsorrow · 05-10-2010 11:51AM

It can hardly be called a lie. I don't walk into a restaurant and say "I'm celiac what have you got that I can eat!?" Usually I look at the menu, try and decipher the one or two options (if even) that I can eat, if I'm not 100% sure of a dressing or whatever I ask the waiter/tress does it have gluten in it. Usually I'm met by a blank stare for a few seconds, they get confused, go off and ask the other waiting staff and maybe the chefs. Then they come back, ask am I celiac (looking a bit stressed at this stage) and rather than saying trying to explain my complicated health problems I just say yes, simple as that. Then because nearly every waiter or waitress has heard of celiacs and at least one of them is bound to have served one before, they can guide me to my options. It just makes the whole silly process that tiny bit easier which, for me, makes eating out a bit smoother, less stressful (I get grumpy trying to find places I can eat and an option I like, I don't need to explain my bowel problems in public on top of that), less embarassing and more enjoyable.

EDIT: for the record actually, I had a lovely couple of doctors in the last few years but their hands are tied by protocols with these things.

Adelie · 05-10-2010 11:54AM

Wantobe wrote: »

Why would you pretend to have been diagnosed with coeliac disease when you don't? If you have IBS, then why not say that? If you're gluten intolerent, then why not say that? That is, if it comes up at all. In one way why should they question you anyway when you ask for a gluten free meal?

OK I've never claimed to be coeliac (I'm currently waiting on test results) but the reason people would do so is that many people don't take IBS seriously, don't take gluten intolerance seriously, and don't take requests for gluten-free food seriously. I know from experience. It's not that they question you, but in a busy restaurant they don't seem to pay much heed unless they realise there's a risk of you getting really ill.

Would you risk regularly asking for gluten-free food without mentioning that you're coeliac?

And I get your point that if people demanded their condition to be accommodated by the restaurant, then things might improve. But that means risking agony/hospitalisation/damaging yourself for the sake of principles, which fair enough maybe you would do but I can understand someone simply claiming to be coeliac for the sake of their health.

How many of us are paleo/primal?

Comments