I'm Gluten Intolerant... Intolerant

[elleblue]

Jul 27, 2014 9:42:02 GMT -5 y4m said:

God I hate these articles. You just can't win.

Mostly, I just wish we could stop caring so much about how other people manage their diets. I totally agree with the vegan/vegetarian analogy. Just respect people's dietary choices and move along.

Yes and yes. 

[lilibet]

Jul 27, 2014 9:42:02 GMT -5 y4m said:

Mostly, I just wish we could stop caring so much about how other people manage their diets. I totally agree with the vegan/vegetarian analogy. Just respect people's dietary choices and move along.

Totally agree with this.

I will say though, while there are certainly people who make a big deal about what they can or can't eat and why there are also people who make a big deal when someone turns down something (no matter how politely) because of an allergy/medical issue/preference/whatever.

I've had 3 different instances at work where I've had to turn down ice cream (lactose intolerance). I've always been polite about it and never made a scene or anything but the person pushing the ice cream (a manager in all 3 cases) has made a huge deal about it and pretty much demanded to know why I won't eat it and pulled the "well you can have a little" thing. No, I really can't and please dear god don't make me explain why I can't. Neither of us wants to go through that.

Oh and one manager also got mad that a diabetic didn't have ice cream.

So, just saying there are assholes on both ends sometimes. Which might make already asshole-ish behavior in some that much worse.

[mrsukyankee]

I just had a friend declare that they are going gluten free. She has no body issues with eating gluten, she's just heard/read that it's healthier. I told her that I disagreed but it was obviously her choice. I just don't see the point in cutting a food out of your diet unless you HAVE TO. Products with gluten can give you some great stuff if you have no gluten body issues.

[heliocentric]

Jul 27, 2014 9:11:32 GMT -5 lasagnasshole said:

This diner claimed to be gluten free but was drinking beer and sent back risotto for having gluten?

I understand why the restaurant owner is frustrated, but let's be honest - someone this dumb was bound to find another way to be annoying as fuck, gluten or no gluten.

Agreed. Not only that, anyone asking for gluten free pasta at Vetri is a fool. Vetri is like $400 per person. You are paying for a famous chef to make you a meal you can't get from a box at Whole Foods, let him do his job or don't waste your money.

[aurora]

It really boggles my mind that people care so much about what other people eat. I mean, I get that it's annoying when people are being jerks about it - judging others or demanding that every.single.thing be adapted to them - but 99% of the time I don't really care why someone chooses to eat however she chooses. I actually think it's fun to try new things when I'm hosting people who have different food restrictions. And frankly I don't even care whether it's for a medical need or just simply a "I don't like the taste of mushrooms."

[msmerymac]

I'm DYING over the fact that someone asked MARC VETRI if he had gluten-free pasta. OMG, go buy that crap at Wegmans and GTFO.

[msmerymac]

Jul 27, 2014 9:30:22 GMT -5 kmpls said:

We have Celiac in our family. It is very real and almost killed someone I love as it went undiagnosed for many years.

i go back and forth between being annoyed with and loving people going gluten free who "maybe" don't need to be.

i sure hope the abundance of current gluten free option isn't a fad. And we truly need as a society need to be rejecting fillers ie gluten in food that shouldn't naturally have gluten!

And if we are out at a restaurant then I don't need shit or questions from the waitstaff regarding why we aren't eating gluten. Luckily we haven't ran into many issues. The only question we usually get is if it is an actual allergy and the disclaimer of possible cross contamination or so, they can flag the food.

Regarding gluten free pasta I haven't tried it but family members who don't eat gluten love, love love it so I am a little annoyed with the writers attitude.

I mean... I kind of understand how he, as a chef, doesn't really understand substituting the real thing with the fake thing. He concentrates on coaxing the flavor from whole foods and creating dishes that enhance the ingredients, not that are a bunch of ingredients that fake the flavor of something else. But at the same time, I'm a vegetarian, and sometimes a fake hot dog really fucking hits the spot (especially at a cookout when others have the real thing), because I was raised with meat.

That said, I think a place like Bucca di Beppo or Olive Garden is the place and time for gluten free pasta. You know, when your family wants to go out and eat spaghetti and you, too, would like to fit in and eat spaghetti. Much like the fact that there are a lot of vegetarian options nowadays, I think THAT is a great example of why gluten-free pasta (and bread, and crackers, and beer) should be around. 

BUT with a $150/person tasting menu, I wouldn't expect gluten free pasta - either homemade OR from a box. Granted, some people can argue that at $150, you should be able to have whatever the hell you want. But it's kind of like asking for Kraft dinner or hot dogs or something, to me.

[kmpls]

Jul 27, 2014 16:24:37 GMT -5 msmerymac said:

Jul 27, 2014 9:30:22 GMT -5 kmpls said:

We have Celiac in our family. It is very real and almost killed someone I love as it went undiagnosed for many years.

i go back and forth between being annoyed with and loving people going gluten free who "maybe" don't need to be.

i sure hope the abundance of current gluten free option isn't a fad. And we truly need as a society need to be rejecting fillers ie gluten in food that shouldn't naturally have gluten!

And if we are out at a restaurant then I don't need shit or questions from the waitstaff regarding why we aren't eating gluten. Luckily we haven't ran into many issues. The only question we usually get is if it is an actual allergy and the disclaimer of possible cross contamination or so, they can flag the food.

Regarding gluten free pasta I haven't tried it but family members who don't eat gluten love, love love it so I am a little annoyed with the writers attitude.

I mean... I kind of understand how he, as a chef, doesn't really understand substituting the real thing with the fake thing. He concentrates on coaxing the flavor from whole foods and creating dishes that enhance the ingredients, not that are a bunch of ingredients that fake the flavor of something else. But at the same time, I'm a vegetarian, and sometimes a fake hot dog really fucking hits the spot (especially at a cookout when others have the real thing), because I was raised with meat.

That said, I think a place like Bucca di Beppo or Olive Garden is the place and time for gluten free pasta. You know, when your family wants to go out and eat spaghetti and you, too, would like to fit in and eat spaghetti. Much like the fact that there are a lot of vegetarian options nowadays, I think THAT is a great example of why gluten-free pasta (and bread, and crackers, and beer) should be around. 

BUT with a $150/person tasting menu, I wouldn't expect gluten free pasta - either homemade OR from a box. Granted, some people can argue that at $150, you should be able to have whatever the hell you want. But it's kind of like asking for Kraft dinner or hot dogs or something, to me.

I get what you are saying but we don't eat at Olive Garden type places. We eat at local upscale restaurants. We ate Friday night at a local Italian place which hand makes all their own pasta and Family member needed gluten free pasta subbed in otherwise amazing from scratch ragu pasta dish that was in the $40 range. And they thought it was amazing, etc, etc.

I know there are chefs who don't allow substitutions, it's their menu, whatever. But there are people who have deadly allergies. My family members included. It's not a choice like choosing not to eat meat.

and gluten free pasta is not like fucking hot dogs at a fancy restaurant. Give me a fucking break.

[elleblue]

Ok, so we can all agree with the author/chef that the woman is a complete idiot who didn't seem to understand the ins and outs of truly eating gf. However, I will say that I once ordered risotto and it came out with orzo (a pasta) mixed in with the arborio rice, despite that inclusion not being listed on the menu. Ever since that time, whenever ordering risotto, I double check to make sure that the restaurant uses only rice and no gluten containing ingredients. Sounds like this guy might have made fun of me too for my questions, and I'm no rube, I've been eating this way for a decade. Even when ordering something as simple as grilled fish, it's a good idea to check that the chef won't be dusting it with flour before cooking. 

[wambam]

Jul 27, 2014 17:41:13 GMT -5 elleblue said:

Ok, so we can all agree with the author/chef that the woman is a complete idiot who didn't seem to understand the ins and outs of truly eating gf. However, I will say that I once ordered risotto and it came out with orzo (a pasta) mixed in with the arborio rice, despite that inclusion not being listed on the menu. Ever since that time, whenever ordering risotto, I double check to make sure that the restaurant uses only rice and no gluten containing ingredients. Sounds like this guy might have made fun of me too for my questions, and I'm no rube, I've been eating this way for a decade. Even when ordering something as simple as grilled fish, it's a good idea to check that the chef won't be dusting it with flour before cooking. 

You really can't ask too many questions.

I have a wheat allergy similar to y4m (hives, swelling of face, hands, and feet - but not anaphylaxis). I had an exposure last winter with the gluten free cheesecake at Cheesecake Factory. Apparently, there's no gluten but there's wheat husk. That was a pretty big bummer.

[IIOY]

Another thought on people being assholes about their food: it isn't always just about what's in the dish itself. In my son's case, we have to worry about cross-contamination. Thus, just because we order a nut-free dish doesn't mean it actually comes out nut-free.

He is 6, which means we tend to either avoid eating out, or bring food along for him. It's relatively easy now. When he is 20 and wants to go out with friends, however, he deserves to be reassured, accurately, that his food won't kill him.

Nevertheless, I am going to play the optimist here. All of this hubbub is good in the grand scheme because I've seen a huge change in my lifetime about how restaurants address food needs, and I think things will only continue to improve in this regard. I think it was @helenabonhamcarter who said above that all of the assholes, wherever they might be, have made it a safer environment for all of us and ITA.  At the very least, they have caused restaurants and food manufacturers to be more transparent about what is in their food.  I honestly can't imagine trying to feed my child without the nut and egg warnings that are now required to be on packaging.  I would live in constant terror.

[irishbride2]

Those warning suck though. It amazes me what they don't include. Like some packages leave milk off the bolded warning list but have milk as the second ingredient. And it's companies that normally include milk on their bolded list.


After two incidences I no longer let h look at the bolded warning as his guide.

Side rant

[Waffles]

I just had a "gluten intolerant" person stay with us for the weekend. She's not been diagnosed with anything, but was told by a family friend "herbologist" that she should cut out gluten and carrots.

She's a relative and we wanted to be good hosts so we did buy her gluten free bread and gave proper thought to where we could have dinner (Mexican and Indian won) and even found her gluten free beer.

Seeing her "make an exception" and order normal beer, "try" the baguette and "taste" the lasagne moved her from the unfortunately intolerant category to the arsehole picky eater category.

I feel this is the case for a lot of people.

[sugarglider]

Jul 28, 2014 6:17:07 GMT -5 IIOY said:

Nevertheless, I am going to play the optimist here. All of this hubbub is good in the grand scheme because I've seen a huge change in my lifetime about how restaurants address food needs, and I think things will only continue to improve in this regard. I think it was @helenabonhamcarter who said above that all of the assholes, wherever they might be, have made it a safer environment for all of us and ITA.  At the very least, they have caused restaurants and food manufacturers to be more transparent about what is in their food.  I honestly can't imagine trying to feed my child without the nut and egg warnings that are now required to be on packaging.  I would live in constant terror.

This reminds me, when my family went to WDW this past spring, at nearly every restaurant, the waiters would ask at the outset if there were any food allergies to adjust for any issues. Obviously Disney is on top of its game wrt hospitality, but it's great that families don't have to go out of their way to make sure they can eat out.

[wambam]

Jul 28, 2014 8:48:11 GMT -5 sugarglider said:

Jul 28, 2014 6:17:07 GMT -5 IIOY said:

Nevertheless, I am going to play the optimist here. All of this hubbub is good in the grand scheme because I've seen a huge change in my lifetime about how restaurants address food needs, and I think things will only continue to improve in this regard. I think it was @helenabonhamcarter who said above that all of the assholes, wherever they might be, have made it a safer environment for all of us and ITA.  At the very least, they have caused restaurants and food manufacturers to be more transparent about what is in their food.  I honestly can't imagine trying to feed my child without the nut and egg warnings that are now required to be on packaging.  I would live in constant terror.

This reminds me, when my family went to WDW this past spring, at nearly every restaurant, the waiters would ask at the outset if there were any food allergies to adjust for any issues. Obviously Disney is on top of its game wrt hospitality, but it's great that families don't have to go out of their way to make sure they can eat out.

I know a lot of people here don't like cruising, but the service my H and I have received with regard to our allergies on both RC and Princess were seriously amazing. 

[irishbride2]

Disney has been awesome for a long time. They are like the holy grail of allergy dining. They rock.

[msmerymac]

Jul 27, 2014 16:36:39 GMT -5 kmpls said:

Jul 27, 2014 16:24:37 GMT -5 msmerymac said:

and gluten free pasta is not like fucking hot dogs at a fancy restaurant. Give me a fucking break.

One highly processed food can't be compared with another highly processed food? I've never seen house-made gluten free pasta anywhere, but I haven't looked closely, so I guess I could be wrong. I would think cross-contamination would be an issue with making it at the restaurant, though.

[angromarsi]

I don't chime in often ( lurker here) but articles like this get me irate! It's a lose lose situation for many. DH is not officially a celiac. Like a pp had mentioned, He had already gone GF after trial and error and then went to the dr. That dr didn't know how to accurately diagnose and when he finally did find one, The thought of eating gluten for 2 weeks to get an official diagnosis via biopsy was a traumatic thought to him. cross contamination can have him in the bathroom for a majority of the next 48 hours. 10 years ago most doctors didn't even think of it/know how to diagnose as evidenced by what my MIL went through (also gluten intolerant).

So how can he get the seriousness across to a server? Is he allergic? No. Is he a celiac? Well technically no, but we believe he is given his medical history. Is he intolerant? God yes. But intolerance isn't interpreted as much of an issue so he either needs to lie about an allergy or the celiac or just go into the details of his symptoms with the server--and let's face it. Nobody wants to hear that but we've found it is the most effective!! His symptoms don't start until about 30-45 min after he's done eating. Usually were gone by then so it's not an immediate reaction.

The GF fad has brought about much better foods than there were 10 years ago but it has not all been for the better and articles like this are not helping matters at all.

[downtoearth]

Jul 27, 2014 7:12:26 GMT -5 ringstrue said:

when did we start using the term "gluten intolerance?" Why not just say, "I can't eat wheat," or, "I'm allergic to wheat."


Um, because its an accurate statement and an intolerance and an allergy aren't the same fucking things? 

Holy crap maybe they should start teaching some basic biology courses at cooking school. 

Gluten intolerance is no joke. I'm not arguing that that woman "needs" gluten-free pasta as opposed to just some freakin risotto, but if you have a true intolerance, eating that food can potentially send you to the hospital for the night. 

Wait, what?!  That is not at all how our doctor explained it to us.  An intolerance, according to our GI ped guy was just that, something that gave you gas and made you uncomfortable with other symptoms, but that you can still digest and will not ultimately harm you over time.  Also he mentioned that an intolerance can be mitigated or even lost over time and it's not a life-long diagnosis (and actually it's a default diagnosis or he said something like that).  He was very clear to explain that if you have an intolerance that you can still digest other foods and absorb nutrients and it is not life threatening. 

A true allergy gluten (celiac) was explained as the cilia in your digestive system shutting down and being damaged over time and so you cannot digest - not only gluten, but anything after awhile.  Therefore you don't get any nutrients from any of your foods. It actually damages you more and more the more you eat gluten.  He was very clear that celiac and true allergy results in blood markers and a shut down digestive system (sometimes with pain and sometimes it numbs you so you don't feel anything), but it can be life threatening. 

I mean, I guess, even I don't understand and our son went through tests and 3 doctors for the past 6 months.

[irishbride2]

That is how our allergists explain the difference too. There are allergies, intolerances, and then other diseases that range in severity. But this is the first time I've heard of a diagnosed intolerance sending someone to the hospital.

Now I'm confused.

[downtoearth]

Jul 27, 2014 9:02:57 GMT -5 @helenabonhamcarter said:

I've also decided that it's a total asshole maneuver to tell someone who is happily and not at all dickishly skipping gluten that science says they are a fucking idiot.

To do so would make me just as bad as the anti gluten proselytizers.

Yeah, I think that is the problem with gluten intolerance... the people who are proselytizers have ruined it for other mild people, to use your awesome words.  It makes us cringe b/c if you have any cross-fit friends, they are so Paleo/Gluten Intolerant chatty that you start to get stabby anytime you encounter someone who is like that.  I can see rolling my eyes at the woman who drank beer, but skipped risotto. It would have been hard for me not to mention that the beer has a lot of gluten. 

[zoidberg]

Jul 28, 2014 11:20:53 GMT -5 downtoearth said:

Jul 27, 2014 7:12:26 GMT -5 ringstrue said:

when did we start using the term "gluten intolerance?" Why not just say, "I can't eat wheat," or, "I'm allergic to wheat."


Um, because its an accurate statement and an intolerance and an allergy aren't the same fucking things? 

Holy crap maybe they should start teaching some basic biology courses at cooking school. 

Gluten intolerance is no joke. I'm not arguing that that woman "needs" gluten-free pasta as opposed to just some freakin risotto, but if you have a true intolerance, eating that food can potentially send you to the hospital for the night. 

Wait, what?!  That is not at all how our doctor explained it to us.  An intolerance, according to our GI ped guy was just that, something that gave you gas and made you uncomfortable with other symptoms, but that you can still digest and will not ultimately harm you over time.  Also he mentioned that an intolerance can be mitigated or even lost over time and it's not a life-long diagnosis (and actually it's a default diagnosis or he said something like that).  He was very clear to explain that if you have an intolerance that you can still digest other foods and absorb nutrients and it is not life threatening. 

A true allergy gluten (celiac) was explained as the cilia in your digestive system shutting down and being damaged over time and so you cannot digest - not only gluten, but anything after awhile.  Therefore you don't get any nutrients from any of your foods. It actually damages you more and more the more you eat gluten.  He was very clear that celiac and true allergy results in blood markers and a shut down digestive system (sometimes with pain and sometimes it numbs you so you don't feel anything), but it can be life threatening. 

I mean, I guess, even I don't understand and our son went through tests and 3 doctors for the past 6 months.

I think you misunderstood him. An intolerance means that you cannot digest that particular thing but, as he said, will not damage you nor cause malabsorption. However, the definition of intolerance is that you cannot digest the thing itself - ie lactose. The whole point of things like lactaid is to allow a lactose intolerant person to break down and digest lactose so that they do not get the symptoms of an indigestible thing moving through their GI tract.

Celiac is absolutely NOT an allergy. Totally different set of antibodies. The root of celiac disease is intolerance to gluten. Intolerance - cannot break down gluten proteins. However, what ends up happening is that your body develops antibodies against those un-digested proteins (rather than just passing them with some degree of discomfort) and when those antibodies go to war, the lining of your small intestine is collateral damage. The cilia do not "shut down", they are destroyed by your own immune system. That intestinal damage then goes on to cause a host of other issues.

[downtoearth]

Jul 28, 2014 12:22:45 GMT -5 zoidberg said:

Jul 28, 2014 11:20:53 GMT -5 downtoearth said:

I mean, I guess, even I don't understand and our son went through tests and 3 doctors for the past 6 months.

I think you misunderstood him. An intolerance means that you cannot digest that particular thing but, as he said, will not damage you nor cause malabsorption. However, the definition of intolerance is that you cannot digest the thing itself - ie lactose. The whole point of things like lactaid is to allow a lactose intolerant person to break down and digest lactose so that they do not get the symptoms of an indigestible thing moving through their GI tract.

Celiac is absolutely NOT an allergy. Totally different set of antibodies. The root of celiac disease is intolerance to gluten. Intolerance - cannot break down gluten proteins. However, what ends up happening is that your body develops antibodies against those un-digested proteins (rather than just passing them with some degree of discomfort) and when those antibodies go to war, the lining of your small intestine is collateral damage. The cilia do not "shut down", they are destroyed by your own immune system. That intestinal damage then goes on to cause a host of other issues.

So can I ask a follow-up b/c I talked with 3 doctors and 2 people diagnosed with celiac and still didn't understatnd?  Plus we're still getting routine tests for gastro issues for our kid. 

Is it a sliding scale between being self-diagnosed gluten intolerant b/c you feel better without or have symptoms elimnated to a "default" gluten intolerance from a doc due to elimination and making sure your blood work/GI is normal to a celiac diagnosis?  Are they all the a version of the same disease? 

I didn't understand it that way from the docs and I wrote it all down as he was talking and am pretty thorough b/c we didn't want to encourage a future celiac diagnosis by giving our gluten.  I even asked questions like this and the gastro ped specialist said it wasn't a sliding scale from intolerant to celiac - that your body treats them different and you're either celiac or not so you couldn't slide, but it doesn't sound like that now.  Are docs figuring it out still?

[zoidberg]

What I have read is that a person can be gluten intolerant for some period of time before they develop the immune component (which is celiac disease). I am not positive if this is still what the researchers believe or how long a time it may go on.

The thing that is amorphous is gluten sensitivity, which is the subject of the study that someone posted earlier. That study seems to indicate that those people may have an issue with something else that is found in the same foods. Whether or not it is real, who knows?

ETA If you have the gene mutation for celiac, there really isn't much you can do. I read some studies a few years ago about delaying giving gluten foods to little kids with the mutation can "prevent" the development of celiac, but I don't think they followed those kids to adulthood to see if the ever developed it. They might have just not gotten it as little kids, and then it started in their 20s or something.

FWIW, I was kind of a sickly kid but didn't start having serious symptoms until I was in high school and was finally diagnosed at 27.

[polarbearfans]

Jul 28, 2014 11:20:53 GMT -5 downtoearth said:

Jul 27, 2014 7:12:26 GMT -5 ringstrue said:

when did we start using the term "gluten intolerance?" Why not just say, "I can't eat wheat," or, "I'm allergic to wheat."


Um, because its an accurate statement and an intolerance and an allergy aren't the same fucking things? 

Holy crap maybe they should start teaching some basic biology courses at cooking school. 

Gluten intolerance is no joke. I'm not arguing that that woman "needs" gluten-free pasta as opposed to just some freakin risotto, but if you have a true intolerance, eating that food can potentially send you to the hospital for the night. 

Wait, what?!  That is not at all how our doctor explained it to us.  An intolerance, according to our GI ped guy was just that, something that gave you gas and made you uncomfortable with other symptoms, but that you can still digest and will not ultimately harm you over time.  Also he mentioned that an intolerance can be mitigated or even lost over time and it's not a life-long diagnosis (and actually it's a default diagnosis or he said something like that).  He was very clear to explain that if you have an intolerance that you can still digest other foods and absorb nutrients and it is not life threatening. 

A true allergy gluten (celiac) was explained as the cilia in your digestive system shutting down and being damaged over time and so you cannot digest - not only gluten, but anything after awhile.  Therefore you don't get any nutrients from any of your foods. It actually damages you more and more the more you eat gluten.  He was very clear that celiac and true allergy results in blood markers and a shut down digestive system (sometimes with pain and sometimes it numbs you so you don't feel anything), but it can be life threatening. 

I mean, I guess, even I don't understand and our son went through tests and 3 doctors for the past 6 months.

I do not have celiac... I went gluten free before I could be tested, and there was no way I was going to make myself feel that awful again for a test when it isn't too hard to just avoid gluten. I did have the genetic test done, and I have a moderate risk of developing celiac in my lifetime, but don't have it now. My wheat allergy test came back negative, but so did every other test included things that swell my throat shut. My doctor said my reaction to gluten is autoimmune... I don't know or really care about terminology of what's intolerance vs allergy. I know gluten makes me sick and there is no reason to eat it. 

While i do have ulcerative colitis, my worst symptoms were anytime I ate gluten containing items. Sandwich with wheat bread? Heavy bleeding for 3 days. Meds kick in stop the bleeding... Another sandwich a week later and heavy bleeding again. Before finally giving up gluten I lost over 20 pounds, was anemic, several vitamin deficiencies., and lost south blood I am suprised I lasted as long as I did before finding a great doctor. My
colon looked serverly sunburned in my 2nd colonoscopy, much different from my first that barely showed anything. My last one looked normal again after giving up gluten, months of immunosupressents, and biologics that don't seem to have an end date. My symptoms improved when I gave up gluten. I miss pizza and beer, but I feel better than I have in my
life. It is amazing how bad I felt the past 10 years and didn't realIze. 

I am am mad that i accidently ate a burger containing wheat or something as a filler last night. Bowling alley burgers cannot be trusted! The place is attached to where I play sand volleyball. The girl at the bar knows I cannot have gluten, let the kitchen know... I should have known when I saw that preformed frozen patty on my plate, so a little my fault. I seriously almost had an accident on the court 20 minutes later. Still feel bad today. I am normally so careful, but I was talking to a new group of people and didn't want to seem picky.

i guess his was a long post to say i disagree that an intolerance doesn't have any effect other than gas, doesn't prevent absorbtion of nutrients, or longer damage. It was my
understanding that intolerances can mean different things. Like lactose intllerance is a lack of a needed enzyme, but others can be an autoimmune response like a gluten intolerance. I cannot take a pill that makes my body digest gluten. The gluten causes inflammation that no medicine could combat while i was still
eating it.