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Obstacles Faced By Celiacs


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#16 Canadian Karen

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Posted 21 January 2005 - 09:12 PM

Oops, hit something by mistake....

Anyway, now there is nothing out here. I talked to the manager at A & P out here and he is very accomodating. He asked me to bring in the wrapper of the breads that I use and he will contact the company to get a list of things we can order. He even said that he is going to make about a 4 foot section in the store for gluten-free stuff as he has heard of celiac and wants to make things more available due to the recent reports that diagnosis is on the rise....

What social stigma and limitations?

This one is quite difficult to answer. When you suffer from chronic diarrhea, the social and emotional aspect can be very demoralizing. The fact that I am 41 years old and have to wear Depends to bed most nights absolutely embarrasses me. Not exactly what you would call sexy for my husband...... Having accidents is traumatic, both at work, at home, or out in public. Waking up to realize that you have had an accident through the night and hope you can clean up and get the smell under control before your husband wakes up.... Worrying about if my husband is going to lose his attraction to me and the paranoia that accompanies that, i.e. is he going to cheat on me? (even though I know he loves me with his whole heart.....), it still is in the back of your mind "Why does he put up with this?"
Another aspect of celiac is the variety of other symptoms, and there are many. For me, the worst is joint pain. Going out on outings are not only difficult bathroom wise, but walking (i.e. at a fair, etc.), I have a hard time keeping up with my family, and they look behind like I'm some kind of an "old woman" or something... Waking up on the morning, for the first 5 to 10 minutes, I am walking around like I was run over by a Mack truck the night before. Not being able to do the more "physical" things with my kids, having to leave that up to my husband (i.e. playing ball, running after the ball, teaching them to ride their bikes, etc.). Another thing to note also is the accompanying variety of other autoimmune diseases we get hit with. For me, it is both hypothyroidism and collagenous colitis. But there is also diabetes, DH (rashes), there is also a link to MS and a multitude of other diseases.

One thing that I must note is the amount of time it takes to finally get a proper diagnosis. Most of us have suffered many years before some bright doctor finally clued into what was wrong with us. Celiac has to be brought to the forefront in the medical establishment. Doctors have got to be educated to spot the signs of celiac. Most people on this site actually found out for themselves through their own research and had it confirmed afterward.

One last thing that I have to say is that, from the time I found out I had celiac (many years ago, and also have had the symptoms since childhood), I know feel pretty sure that I know how I am going to die eventually. I literally am convinced that bowel cancer will be my ticket to heaven. Since I have had the symptoms since toddlerhood, and wasn't diagnosed till my 20's, and the fact that I seem to have symptoms that don't respond to the gluten-free diet, although I have been confirmed to be celiac with both blood tests and scope, I know that my digestive system has suffered years upon years of damage.... That is why I am convinced of my fate.

I am so terribly sorry that I have rambled on and on. I usually am not so long-winded (flatulence wise, yes, but verbally, no, lol!!!!)

Hope this helps you in your endeavors.....

Have a great day!
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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#17 debmidge

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Posted 24 January 2005 - 03:23 AM

I'd have to agree that eating outside of your own home is the greatest obstacle. The pitfalls of this are, but I am sure I will be missing some type of instance:

1) Kids at school who are celiac can't eat snacks brought in by others , in general unless they are fruit or prepackaged made by a company that are considered gluten-free. Little ones might not have the whole gluten-free thing down pat and eat things they should not have.
2) Eating at friends' and relatives' places is unknown territory. Friends and relatives may mean well, but unless they know the ins and outs they could be inadevertently using ingredients that were cross contaminated (like mayo jar) or the egg beaters used to whip the mashed potatoes were last used to mix a gluteny cake and were not cleaned of gluten debris very well. Then you start to get anxiety and even question if there's old gluten between the tines of the forks!
3) Restaurants: do they really understand why cross contamination has to be avoided? What control methods do they use to prevent this? Has this restaurant ever made food for a celiac before today?
4) Caterers and restaurants that host parties: many do not want to prepare gluten-free foods (that has been my experience), so do you go and not eat? do you eat before you go 'cause you know there won't be anything there to eat? do you decline the invite? Do you bring your own food (after you clear it with the caterer ---I don't know how the bride will take it -- will special handling of food be an added cost that the host won't be aware of until they pay the bill?) ? We decline 9 out of 10 catered and restaurant parties; depending on how far away they are and what is the time of the affair.
5) Work - keep lunch at work refrigerator or go home for lunch if possible.
6) mall shopping - can't grab a burger on the run unless you know for certain that that a bun never touched the beef. Since some of us don't trust restaurants at all, your shopping trip is very short so that you can go home and prepare your home cooked dinner from scratch. This is especially true if you are a new celiac and your doctor told you not to eat at restaurants until you are in a "maintenance" phase. Since every celiac is different that phase has no specific time period. Can't run from mall to mall in one afternoon like you used to.

Complaints:

OTC drugs and Packaged foods should have label stating that it's either GLUTEN FREE or not. Hate having to keep checking new formulas, etc. Some times the manufacturers help desks to ask if something is gluten-free is open 8-4 PM M-F in my area and well, I'm at work during those hours and days. I already had a manager bother me about using work time to call (this happended because during my lunch hour the number was busy!).

Not only is the food expensive, but sometimes it's old - been sitting on the shelf right up to the expiration date, if you can figure out what the code/date is.

Some items are not available even at the bigger stores, like Whole Foods and much has to be ordered over mail/internet.

Many doctors still don't know what this disease encompasses and still try to diagnose it as IBS.

The food takes time to prepare, like home made gluten-free breads, cookies. You can buy gluten-free cookies, etc. but sometimes the celiac might be sensitive to an additional ingredient in the premade ones, like soy flour. That would be a reason the celiac would not/could not purchase pre-made breads and snacks.



Social stigma:

Some people don't understand the depth of problem and try to pass it off as a minor health condition. Or say it's all in your head.

Teens probably cheat on diet more so that they an hang out with their friends.



All in all, if you can deal with the negatives (as stated above) you're better off.
If the negatives are true obstacles then you do have to adjust your life that much more.
The one social thing that's bafflling to me is the "super celiac." That's the person who claims that they can handle any situation and they know just what to do in each situation and criticize other celiacs who don't do just like they do.
They pontificate and berate and belittle other celiacs who do it differently (or have other limitations) than they do. This is done without understanding what is going on in the world of the other person. Yes, there's celiac competition within celiac world. That I believe is the worst of it all because you don't see it coming from that direction, then POW!
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#18 2new2celiacs

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Posted 24 January 2005 - 11:02 AM

What obstacles do people with Celiac disease face?
i.e. at work, at home, traveling etc.

WORK: Let's just say this is just one of the difficult factors in my life. I have struggled for most of my life feeling ashamed with the fact that I have job hopped due to the embarrassment of my problems as well as the lack of understanding when I have been comfortable enough to discuss my issues.

HOME: I also have two others in my household that can eat anything they wish and feel it is rude of me to make them do as I have to. I find it very difficult not to cheat when there are so many of our shared "Fave's" that are at my fingertips, self-control comes a little weak to me at times, and yes I pay for that dearly.

Traveling: We recently went to my husbands christmas party which was being held at a nice hotel. We arrived a little late and were surprised to find that it was a "Mystery Dinner" (you know where you solve the murder.) we were seated by one of the actors who also happened to be our server. Mind you, my husband let his work know in advance that I was gluten intolerant and had celiacs diseaase, however, their was either a mis-communication or it was forgetten altogether. At any rate, I wasn't able to inform our server that I was could not eat my meal due to my condition and she looked at me as though I was a leper! She seemed inconvenienced and it made for a very uncomfortable situation at our table since it was my husband first year at this company and we knew hardly anyone.



What are the common complaints?
i.e. about Gluten Free products?

The expense is just part of my problem. The other is that I live in a small town and must drive an hour to purchase such things and the things that I can find our minimal. I must order order the majority of these items online, which I am afraid to do because I have never shopped online before and the safety issues are unclear to me.

The food is sometimes very terrible and I have wasted allot of money on food that just does not work well for me (however, my dog seems to love it, the bread especially).


What social stigma and limitations?

I am truly bothered with people as well as even some of my own family who feel that if we just eat gluten-free that everything will be fine and that you will feel NORMAL again. It does not just bother me it makes me ANGRY!
This is not just like a cold people, this is our life! We have good days and we have bad, and in my case mostly bad days (I hope just because I am newly diag. and still need to work out the kinks) in my case.

limitations: At this point to many to list.

I just can't beleive how much of this is so understood and that yes, even allot of the Doctors out there are not even educated on this disease. Why is that? This dates back centuries. It is not uncommon. My goodness, it has been around longer than AIDS.

On a good note:

I have to say that I am very glad to have finally found a site where there are people who understand how I feel. It is of great reassurance to me that I am not alone.

And for those of you who have emailed me and responded to my posts and to all of you who share your stories and put up advise as well as important info. I thank you from the bottom of my heart!!!!!! :D

-Sarah
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Sarah
"Small Town" Minnesota, USA
Diag:9/04, positive blood tests
Trying to be strictly gluten-free

#19 kabowman

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Posted 24 January 2005 - 11:17 AM

I agree with everything said!!!! Well put...I will add my 2 cents though...

We buy regular food and gluten-free food, however all baking is done gluten-free which tastes a little different, a little chewy, etc. My kids miss "real pancakes" or "real brownies" - however, when I was making gluten-free food and keeping it for just me (I am the only one in the house), that would bother them too. Everyone is still adjusting...

The strange looks when we go to a family gathering at a buffett (ICK) and the strange looks from the cashier when I just order water. They have a hard time understanding that I am not eating their food. I bring a snack and chat.

Going out to eat during a busy time - not really the best idea which means no Friday or Saturday night meals out...even if all the wait staff has been very helpful and friendly (for the places I have called to see if they will cook for me).

We are preparing for our annual big vacation (this year we are going southern) and plan on taking our camp stove and a big cooler so we can cook each breakfast and other meals on the road so I won't get sick. Traveling will never be the same.

Ordering a plain hamberger, no fries, a plain salad without croutons, cheese or dressing and a little guacamole (sp) on the side and paying $2 more for the privelage.

One sick little game I play is: if I were to pick one food that I miss, which one food is worth it enough to eat that I would be willing to get sick...so far, nothing but I still play.

-Kate
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-Kate
gluten-free since July 2004

Other Intolerances:
Strawberries and Banannas (2007)
Nitrates (April 2006)
Yeast (which includes all vinegar so no condiments) (Oct. 2004)
Peanuts (Nov. 2004)
Soy (Oct. 2004)
Almonds (Sept. 2004)
Corn (Sept. 2004)
Lactose/Casein (1999)

#20 Nadtorious

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Posted 24 January 2005 - 12:45 PM

I too agree with all the responses so far. Hopefully I won't be repeating too much with my gripes.

What obstacles do people with Celiac disease face?
i.e. at work, at home, traveling etc.
I work at a group home for developmentally disabled individuals. I frequently have to grind bread in a food processor (part of the texturization of food). I realized about 3 months ago that this was making me sick (breathing it in). I went to my wonderful doctor about it and got a letter for my employer stating that I need to wear a mask when making food at work. Well, I guess my supervisor's sister is a Celiac as well, but never sticks to her diet, so my supervisor now thinks I'm totally crazy.
Home poses no real problems. My boyfriend is very careful with his gluten-y foods. I just wish I didn't have to cook every dang meal from scratch.
I just went to Germany for 2 weeks. I didn't trust my airline to provide me with a meal that I could eat, so I called the airline and they said I could bring my own and heat it in their microwave. Well, after I boarded the plane, I asked the stewardess about it and she looked at me like I was nuts and said they didn't have a microwave on board. She later offered to heat it up in one of their ovens. I was nervous, but asked her to clean the pan first and make sure it wasn't touching anything else. 2 hours after I ate, I had one of the worst reactions I've had since diagnosis. Next time I'll bring dried fruit.

What are the common complaints?
i.e. about Gluten Free products?
I have yet to find a "gluten free" product I can tolerate. My diet is very simple (almost boring), but all I eat are naturally gluten free foods. When I ate the "gluten free" products, not only was I disappointed in the taste, but I gained weight, was sick all the time, and broke.

What social stigma and limitations?
I race on a mountain bike team in Colorado and my teammates know I'm a Celiac, but it took almost a year for them to understand why I refuse to ride when I've had a reaction. I think they thought I was crazy for a long time.
My close friends think I'm paranoid. I am still somewhat ashamed to explain celiac disease to new people, as it's an embarrassing but major part of my life. I don't get sick too often anymore, usually only when I'm trying something new, but I think to myself sometimes that I would have more friends if I was "normal".

Hope this helps. Sorry for the rambling.
Nadia
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#21 VegasCeliacBuckeye

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Posted 24 January 2005 - 01:24 PM

"They pontificate and berate and belittle other celiacs who do it differently (or have other limitations) than they do. This is done without understanding what is going on in the world of the other person. Yes, there's celiac competition within celiac world. That I believe is the worst of it all because you don't see it coming from that direction, then POW!"

I have yet to see this part of the Celiac world.

I must admit, I have a hard time feeling sorry for anyone who knows that a cookie or pasta has gluten in it and then goes ahead and eats it. This absence of "logic" is troubling to me.

I have a few "accidents" a year -- but they are accidents. I have not eaten something I knew had gluten in it since the 1st year of my diagnosis -- maybe it takes folks awhile to learn the hard way.

Everyone I have met have always been supportive and understanding. I suppose I am lucky that I do not have extreme symptoms like some of you. My joint pain and digestive disorders cleared up after being on the diet for 6mos - 1 year.

I suppose I responded because I have never heard other Celiacs belittle or berate other Celiacs. Is this common?
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#22 celiac3270

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Posted 24 January 2005 - 02:07 PM

Everyone I have met have always been supportive and understanding. I suppose I am lucky that I do not have extreme symptoms like some of you. My joint pain and digestive disorders cleared up after being on the diet for 6mos - 1 year.

I suppose I responded because I have never heard other Celiacs belittle or berate other Celiacs. Is this common?


I've been around supportive/understanding people too--for the most part. Everyone in my family has been supportive and understanding--trying to learn a bit about celiac disease, etc.--my 80-year-old grandparents started bringing in gluten-free foods from a healthfood store in CT that we couldn't find in NYC and mainstream gluten-free products--in GREAT BULK. Even at school kids have been really nice--of course, there's the occasional: "I'd kill myself if I couldn't eat pizza." Or, "You can't have this either? That sucks!" But they've been nice about everything.

At camp, I encountered some less nice people who would make fun of it (and a lot behind my back, I heard) or wouldn't take it seriously. They were really cold-hearted, but many teens can be that way if they don't understand it or don't care to. I doubt that many adults are like that, though.
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#23 KaitiUSA

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Posted 24 January 2005 - 02:33 PM

Obstacles:Eating anywhere else but home is a big one that was already mentioned. I learn not to trust anyone who says o yeah it's gluten-free. Even going to a friends house to eat it's hard because they try to make stuff you can have but they could have easily cross contaminated. Everywhere you go you pretty much have to bring something because you can't eat just anything.

Complaints: Well I will always miss bread and pizza. I have found some pretty good pizzas and bread but still nothing I have tried beats that taste. Also the gluten-free food is sooo expensive. A bag a glutino pretzels I can have(I mean a litte bag) is about 6.00! The price is ridiculous but I have to have something to eat.
The symptoms I had before going gluten free were the biggest thing for me. I felt like crap on and off all the time.

Social limitations: Lack of acceptance. People don't get how serious it can be and think I make a big deal out of nothing. My parents have been very supportive and in this house it is completely gluten-free with everything we eat. My dad has to eat anything with gluten in it at work and my mom has a wheat allergy so is pretty much on my diet. My friends are very helpful and encourage me but i occasionally get " you should try this...o i forgot you can't " and then laugh from some people I meet. I'm only 17 but this has truly been a life changing experience.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

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#24 mwical

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Posted 24 January 2005 - 03:55 PM

Hi Michael,
While you,re doing your research why don't you find out why manufacturers of gluten-free products charge so much :angry: . Rice is a relatively inexpensive item yet they charge $5.00 for a very tiny loaf of bread that tastes like balsa wood or something. It isn't good at all. You can buy a 25lb. bag of rice for about 5.00 and make lots of things with it. It is bad enough to have to live this way, let alone be ripped of and overcharged for things we have no choice but to buy, or try to make ourselves,like anyone has that kind of time. Same as sugar free products. I also am a diabetic thanks to celiac disease and when you go buy SF Jello they charge you double the price and the only thing that is different is they leave out the sugar. Just doesn't make sense to me. It S/B illegal. I am sure that the response would be that they don't sell as much, but that is nonsense, or they wouldn't sell it to begin with. WELL, now that I have that off my chest, good luck with your research :) .
Mark
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#25 celiac3270

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Posted 24 January 2005 - 04:11 PM

I entirely agree with Mark. The manufacturers completely take advantage of the fact that we have no choice but to make it ourselves, buy their product, or buy the equally overcharged product of the competitors.
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#26 lovegrov

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Posted 24 January 2005 - 08:05 PM

The primary reason for the higher price of gluten-free items is simple -- as with any other product, the more you can make and sell, the cheaper the price. Volume brings down the price ( I work in publications. 1,00 copies of an item might cost, say, $3,000, but 5,000 copies aren't $15,000, they're more like $4,500). Even the top selling celiac product in the world doesn't come close to selling as much as a mediocre or poor selling non-gluten-free product.

richard
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#27 Jeap

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Posted 27 January 2005 - 07:07 PM

I think you have gotten a good idea of the obstecles.

I would like to reitterate that the bathroom think really is a problem. I am much better now. I don't have the emergency rush as I did before the gluten-free diet. But getting that thru to my head has been difficult at best. If not careful, I will find my self panicing for no reason. I never had a panic attack until this stuff hit and bathrooms were not always available. It is really a problem.


Eating out is also a great concern. I use to eat out all the time. Now when I do it is usually to the places I belive I can eat and not get sick. I try new places very seldom. Oh and if I know they have a nasty restroom, forget them - I may need it and no since in taking the risk.

thanks :D
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#28 Professor

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Posted 02 February 2005 - 10:48 PM

I've been at this for a long time, but the SOCIAL ISSUES are still a problem.

The isolation -- I often have to skip things (our first-of-each-semester potlucks at work, for example). Otherwise, I stand around with a diet beverage in my hand and people just have to know why I don't want to eat. (I've had too many bad experiences with cross-contamination, so I don't eat out anymore.)

And yes, I'd like to just go to a restaurant someday! ANY restaurant I want -- just walk in, sit down, and order! :rolleyes:

Another thing -- people (family and friends) tend to make far fewer invitations, since I'm such a "hassle" to prepare for (I also can't touch dairy, soy, and a few other common ingredients). More isolation. This has changed my life in so many ways. Yes, I always offer to bring my own meal -- I mean, I just like attending whatever the occasion is.

Finally, there are a few who do the raised eyebrows when you have to explain it for the first time and they haven't heard of it -- sort of disbelief, or maybe it's all in my head? Many people are just clueless about medical things, unless they have personal experience. Argh. I'd better quit ranting! :P

Patty
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I am a doctor, but not that kind, and I don't play one online anyway!

#29 catfish

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Posted 03 February 2005 - 10:15 AM

Typical scenario;
I am out running errands with my family, it's getting too late to cook at home (everything takes longer to cook gluten-free since instant foods like hamburger helper aren't an option) so we'll find a place to eat. I look over the menu and find one or two things that <i>might</i> be gluten free. The waiter comes over and asks what we want. I mention that I'm allergic to wheat, rye and barley (it's easier than explaining what celiac disease is) and ask if the marsala sauce has any wheat flour in it. The waiter immediately response, "Oh, no- no wheat flour."

Now you might think this answer is adequate, but being more experienced with this sort of thing I ask again, "There is no flour in it? For thickening? How about in the seasoning mix?"

They respond sharply, "No, of course not!"

So I triple check, "So the chicken is not soaked in a marinade or seasoned with a seasoning with flour in it, there is no chance that any of the sides have wheat flour or barley or rye products in them?"

"No, I'm sure it's fine but if you are really worried I'll check with the kitchen staff"

They check with the kitchen staff and the answer is that it's fine. No wheat, no rye, no barley.

Okay, so I order the chicken marsala. Twenty minutes later they bring out the meal, and of course there is a big slice of bread on the plate that wasn't mentioned on the menu. I ask for them to make it again since I am "allergic" to wheat. They respond that it is WHITE bread, not WHEAT bread. Then I have to explain that white flour is made from wheat. You'd think that they'd know this, but I'd say at least 40% of the people in food service don't seem to make that connection.

So another 20 minutes later my family is almost finished eating and I am just getting my meal. I take a bite and find that the chicken has a bit of a crust. It's made with bread crumbs.

Now I can't eat it, it's been made over for me at least once already, and the kitchen didn't think it would be a problem because the chicken isn't coated with flour, it's coated with bread crumbs.

So I end up getting sick from the bite I took, I don't get to eat anyway because it's too late and too risky to try and have them make it again (who knows what else they'll mess up on) and so I just go hungry for the night.

I've had waiters tell me that their pasta is safe since it has no flour in it, it only has semolina.

I've had arguments with kitchen staff over whether soy sauce has wheat in it.

The people cooking the sweet potatoes don't even know that struesel is made from flour and oats. How is that even possible?

And how do you ask the waiter of a Mexican restaurant whether the enchilada sauce is thickened with flour when they barely speak 50 words of English? I am planning on taking up Spanish just so I can eat at Mexican restaurants again.

When I go to other people's homes for dinner, I bring my own- I don't even tell them about my restrictions because there is no way I can expect them to cook for me. I can barely manage to make a safe meal for myself after studying it for a year, how can I expect them to do it on a day's notice? My own mother still hasn't figured out that I can't necessarily have any brand of barbecue sauce you pick off the shelf... "But honey, I didn't even touch the flour canister when I cooked it!" :rolleyes:
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