Do Other People Do This To You?

[Chloe77]

I was just wondering if this happens to everyone, because it seems to happen to me a lot and it becomes somewhat offending.

I will be forced to discuss my gluten intolerance with someone in a situation where there is food being offered to me. The person will begin inquiring about my problem. A day later, they start buying gluten-free foods and saying that they are trying the gluten-free diet. They say they feel better and admit it might be psycho-somatic. Yet they cheat here and there. Also, they are not checking every little ingredient and calling the company and suffering from the same severe symptoms that I experience.

I get the sense from most people that they think it is easy to go gluten free and do not understand why I act like it's so frustrating. But they are cheating! And missing a lot of little things. They are going out to eat and not even recognizing cross-contamination!! And then only noticing mild side effects...because they are not gluten intolerant!

Now I agree with going gluten-free for whatever reason you choose, but I feel slightly upset (maybe I just have a chip on my shoulder) when the person is not even really totally gluten-free and missing the small little details and obstacles I come to everyday when eating. Also, they know that if they want a McDonald's cheeseburger they can just go get one. We have to live with knowing we will never have one. They know that on Valentine's Day they can go out on a date with their husband. I haven't been out on a date in years! I just don't know why I feel like everyone seems to think it's not a big deal and cannot understand why I battle with anxiety and depression over some portions of it.

Most of all, I am upset that since they do not experience severe symptoms, they do not expect it to be a big deal if I come into contact with gluten, and are not understanding when I turn down foods that only appear to be gluten free. Sorry, this is more of a vent than anything else, but I recently had this happen to me a couple of times and sort of feel exploited as if gluten-free is just some fad rather than a serious problem for some people. I even know a girl who is going on a so-called gluten-free diet so she can lose weight. She saw me drop weight drastically when I had to switch so I guess she thinks it is a good idea for her. I watched her eat a bunch of regular flour pizza the other night :/ Makes me feel like an idiot.

[jennyj]

My heart goes out to you. I understand how frustrating it can be also. I too had someone tell me that they wanted to try my "diet" since I lost 50 pounds they wanted to too. They just don't get it that it is an everyday way of life for us and not just a " I am going to try this today" Your McDonalds comment was so right on. I would love to go get a Big Mac but I know I can't. I sell gluten free foods in our store and had a customer tell me that another customer of mine said I was wrong when I said it isn't a good idea to cheat. She told her eat want you want but only in moderation because it won't make you sick all the time. I told her that I can't or won't cheat, to me it is just not worth it. Good luck and stay strong. We are a strong group of people and our willpower will help us get through what we need to, as well as this wonderful group we have to share, rant, laugh, and cry with.

[blueeyedmanda]

I actually have never had this happen to me. I do have a coworker who has a limited diet but nothing on gluten side. My heart also goes out to you. Very frustrating.

[greendog]

I'm often accused of being on the Adkins diet, and I have to tell people they are not really the same. Then other people try to tell me how lucky I am because I can avoid all of those high calorie foods. I tell them that I did a great job of staying in shape when I didn't have the gluten problem. One good thing is as I get older my craving for most of those foods I can't eat is getting less and less. At home it's not a problem, but when I am travelling it is more of a hassle. Airport restaurants don't carry many gluten free food items. So like a caveman when flying I have relied on nuts, berries, bananas, milk, chips, etc. to keep me going.

[kbtoyssni]

I wonder if this would happen less if you emphasized the medical side of this when explaining the disease. Something along the lines of "no, I'm not eating that because I have an autoimmune disease that causes my immune system to attack my intestines and makes me throw up, get migraines, all my joints hurt and I'm exhausted for weeks". Heck, I'd leave someone alone if they said something like that to me!

[Mom23boys]

Oh yes! I'll have people tell me they are going milk free to eliminate their tummy issues yet they are not about to give up their yogurt and cheese. Then they have the nerve to tell me it is in my head because they still have tummy troubles.

[Lisa]

What bothers me the most is that the service community can be confused about selective ordering and medically restricted ordering.

It deminished the importance when I order a salad without croutons and the previous person ordered the same but accepted the croutons.

[Jestgar]

You can laugh and say "Yes, everything is easier when you cheat." Then don't address it again.

[2kids4me]

It is frustrating because others without celiac disease have no knowledge of the disease and do not have to follow the diet - it is a choice rather than being used to treat an autoimmune disease. I liken it to diabetes when discussing it - a diabetic has to follow a diet - and watch carb intake, weigh food, take insulin (or meds if Type 2) etc. Diabetics can't just go out and eat what they want without feeling crappy from high blood sugars . A non diabtetic can follow the diet but if they have "a craving" or are running late - they grab a chocolate bar or skip a meal and binge later. We can't.

Same with celiac disease - we have to follow strict gluten free, watch for cross contamination. I do not trust others (non celiac) to prepare a safe meal -unless I hover over the preparation.

Unless someone has celiac, diabetes or other diet concerns there is no way they can understand the ins and outs. Look how long it takes us to adjust, and learn how to live with it.

Many doctors do not get the day to day challenges either, or the "fallout" if there is cross contamination.

The "others" are not acting with malice - they are acting out of ignorance. Its that simple. They dont know. I agree with kbtoyssni and the explanation about the medical side of it.

I think this is a universal annoyance encountered by anyone with medical issues. We can all appreciate how limiting a physical handicap is and we can sit in a wheelchair, or put a blindfold on for a short period...but we can take the blindfold off to watch the sunset, and we can hike up the stairs if we dont see an elevator, we can maneuver through narrow halls or use any restroom available.

The point being - it is unrealistic to expect anyone not suffering the same condition to understand the finer points of day to day restrictions.

It is normal to resent others who live a carefree life, when we cannot. It is frustrating when others - even close family members don't get the big picture. That is a normal emotional reaction to having choices limited through no fault of your own. I chalk those days up to: wishing I was normal, but knowing I can never be.

[Glutina]

Or, there is another side to this whole thing where someone says they are "gluten intolerant" but just choose to "suck it up" and deal with the consequences. ....really???? It makes me feel like they are either not gluten intolerant then, or in serious denial. I feel like saying, "well, I'm sorry but even the smallest amount affects me, personally....even when I accidentally slip up, I feel the consequences soon-after. And the long perios of time it takes me to feel normal again after glutening is not worth the cheat"

That kind of comment, where you turn it around to yourself and your personal severity of symptoms, seems to help them understand a bit more where you are coming from.

-Glutina

[Oriana]

yeah, someone said to me that they would just deal with it if they had a gluten problem... I just think people don't really have any clue how terrible it is to have the symptoms so they think... oh, well, just suck it up... lots of people have problems with digesting different things...

[MNBeth]

I have a friend who is self-diagnosed gluten-intolerant, but she takes communion and eats the topping off pizza. Doesn't really bother me, except for its potential to mislead our mutual friends about my own and my son's condition. Hasn't really come up yet, though. I've been too sick to socialize!

Finally getting better, though, I think. Hope!

[CeliacMom2008]

And let's not forget that with Celiac we're not just talking about feeling sick for a few days. There's the increased risk of cancer, arthritis, diabetes, and all the other really horrible stuff if you cheat regularly. I think that's the part that is hard for a lot of people to grasp. I think that's one of the reasons that forums like this are so helpful. We get to "talk" with people who really do understand, who really do get it.

A couple weeks after my son was diagnosed some boys at school threw bread on his lunch. My husband and I called the parents of the kids to explain what he has and to answer any questions (not to get them in trouble. Kids will be kids. We just wanted to explain). One set of parents was totally great about it. The other mom went on a tyraid and ended up yelling at me. She said my son was "making light of it" by saying it was poison to him. Talk about not "getting it." I had already explained the disease to her a couple of times and she really just doesn't care. Her son's birthday party was the only party we've had since diagnosis (the week before the bread on the lunch incident). I was so nervous. It was a pizza and cake deal. I called her to find out what time they were eating so I could bring my son gluten-free pizza and cake. When I showed up (with arms loaded with gifts, cake, and pizza) all the kids were in the pool. She said she decided to eat later (2 hours later!). I sent my son off to the pool and went back to the car and cried. It was my first gluten-free pizza. My first gluten-free cake. My first time letting my son eat outside of my watchful eye (it was at the end of Christmas break, diagnosis was right before Christmas). How hard would it have been to call me back and let me know?!?!?

Luckily I'm married to a calm, rational man (at least he was after he got done exploding about how insensitive she was - what else was he to do, his wife was crying! ). He pointed out that we could make another pizza at the right time, take it to the party, and lurk outside the room and keep an eye on things. Which is what we did. And my son never knew anything was amiss...

OK, clearly I've been holding that little story in way too long! Thanks for listening to me vent! Wasn't this someone else's topic?!?!?

[YoloGx]

I have a friend who is self-diagnosed gluten-intolerant, but she takes communion and eats the topping off pizza. Doesn't really bother me, except for its potential to mislead our mutual friends about my own and my son's condition. Hasn't really come up yet, though. I've been too sick to socialize!

Finally getting better, though, I think. Hope!

I don't really blame people for not understanding. Hell, it took me years to figure out. However I do think this kind of false concern and lack of understanding could be kind of sucky.

I suggest not getting drawn in down a poor me road. Just say how its worth it to you. Offer some general advice but be non committal. If they insist on getting into it more I think telling them about the medical reaction/sensitivity is a good idea, and then add that by following this you feel so much better and that its less likely you will get various degenerative diseases like cancer, diabetes or heart disease, glaucoma or dementia--and that with celiac you are less likely to get bacterial infections and parasites. You could also add that celiacs tend to have a vigorous old age assuming you are strict with your diet. Plus its doubtful you would ever get brittle or have stiff joints. I think trying to take a negative and turn it into a positive is always a good idea.

[imhungry]

I've learned to invest my energy into those need to know, i.e. my mom because she cooks for me, family and some friends. That's it. It is a pain in the butt to try to get people to understand and we waste energy trying to get them to understand when they never will.

Another note, my daughter is dairy intolerant. This week is National Lutheran Schools week and they ordered Pizza Hut pizzas for everyone - they told my husband we had to find something different for her to eat because Pizza Hut could do nothing about it. I was infuriated. I miss out on enough being dairy, wheat and gluten intolerant, and now my daughter is going to be excluded!!!! So, I called Pizza Hut and they were more than willing to send spaghetti for her. I can understand the frustration with making the pizza and cake and then being there at the wrong time. Crazy!

[MELINE]

Hi..I am really realy sorry to hear about some pretty sad incidents such as the ones that are mentioned here. Actually people will never change. Usually it is hard for some people to take our place and understand. We only worry about our little own problems and forget other people.

Till now nothing like this has happened to me. I guess I am still lucky. People in Greece have no idea about celiac (my family doctor has never seen one person with celiac..) cause it is really rare here. But untill now no one has treated me in a bad way....The most frustrating is when they keep telling me in my mom's village that "You can't live witout bread. Bread is good. You must eat some.We are making really good bread here. Just stop thinking about it and you will not have a headache or nausea....." It's kind of funny.....

Here are some thoughts.....When you have something that differs from other people then other people may not understand and treat you cruel. You have some choises then. . First you can try to explain. If they do not undersand you can keep on crying about that cruel behavior or you can ignore them. Be sure that someday they will find themselves in your position (we all have health issues in our life) and then they will understand. And we, oureselves, can be proud that we are lucky enough to have a disease that does not prevent us from having a normal life, and at the same time because or this disease we are sensitive enough to other people's problems.

[Fiddle-Faddle]

Hi, Chloe!

I have been gluten-free for over two years now. I am one of those who DON'T have severe reactions to cross-contamination--but I am vigilant about being gluten-free, to the point of not going out to eat unless I absolutely have to.

At home, I make my own gluten-free everything--bread, cookies, pancakes, chicken nuggets, fish sticks, meat loaf, etc. from scratch (not from mixes).

You might wonder why I am so strict with the diet if I don't have severe reactions. I had one bout of dermatitis herpetiformis, and I thought I was going to lose my sanity. It looked and felt like severe poison ivy--horribly itchy, burning, oozing, and it was completely symmetrical on both arms. I would have done ANYTHING to get rid of it. Doing without gluten seems a small price to pay to never have to deal with that again. The nice side effects of the gluten-free diet were that I lost 20 pounds ( ); my reflux dramatically decreased; I was able to lower my thyroid meds by 50%; bloating, cramping, and diarrhea disappeared; my energy level came back to normal; my eyes were no longer dry; joint pain disappeared.

I suppose I could go out to get a McDonald's hamburger if I wanted to. BUT I DON'T WANT TO.

I can make gluten-free hamburger buns that to me (and to my family, even the gluten eaters), taste better than those tasteless, dry, sawdusty buns that McD's sells. I can make better tasting hamburgers, too.

I DO think that the gluten-free diet is easy, as long as you don't have to eat out. But it did take a few months of trial and error before I got to that point. This website was a lifesaver for me, because so many experienced members gave me loads of info, good advice, recipes, cookbook recommendations, etc. In fact, I might not have taken the whole gluten thing so seriously if so many had not told me how they had ignored lesser symptoms for years--and then paid the steep price of permanent damage to their bodies because of it. Knowing that I could end up with my immune system attacking my central nervous system makes me as committed to staying gluten-free as you are--even though my symptoms are not YET as severe as yours.

Do I think you have a chip on your shoulder? Hmmm. Maybe. Or maybe you are (because of cc?) still in the stage where you crave gluteny items? Once I was gluten-free for a few months, I got to the point where my friends could eat gluteny things around me, and it didn't bother me one bit. Maybe it would help you to know that that is actually possible?

I may not react severely to gluten myself--but I certainly understand how severely other celiacs often react. Seems like there might be a communication gap between you and your pals--if they don't understand how horrible it is for you, then tell them in gruesome detail!

No, it doesn't bother me if people want to try going gluten-free to lose weight. I know at least one who tried the gluten-free diet JUST to lose weight--and then found out that she really did have a serious reaction to gluten! Perhaps those people who go "gluten-lite" might avoid some of the really terrible autoimmune problems that the heavy gluten-eaters experience.

Anyway, if we want celiac disease to be taken with the utmost of seriousness, then WE have to make so much noise about it that people (especially those in the food industry) HAVE to listen. Let them know how bad your reactions are! If you are at someone's house, barf on them if you get CC'd, or stink up THEIR bathroom! They'll get the idea pretty quickly!

If someone gives you a salad with croutons, explain to them that no, you can't pick them out, it would be like asking someone with a severe peanut allergy to pick peanuts out of their salad (they'll understand that--everyone seems to know someone with a severe peanut allergy).

Remember, nobody expects someone with a severe peanut allergy to have an anaphylactic reaction before they are considered allergic to peanuts!

It's the same for us--we all need to be taken seriously, even if we don't have immediate severe reactions--that way, those of us who don't have those severe reactions might not have to get to the stage where we do get them.

If the squeaky wheel gets the grease, then let's squeak as loud as we can for all we are worth until people GET IT.

I like yolo's suggestion about not falling into the "poor me" trap. Really, I feel LUCKY that I figured out (no thanks to the idiot doctors) the celiac thing before it did permanent damage. I know someone who died of lymphoma, and I think he may very well have had celiac, but all the doctors tested him for was wheat allergy. And when I joined this board, there were a ton of people who wrote about their permament damage that could have been prevented had their doctors only thought of celiac, say, 20 years earlier.

Anyway, hang in there--it does get easier, not only to BE gluten-free, but to get through to other people about it, too.

[Chloe77]

Thank you everyone for your posts. I especially felt supported by those who shared similar situations. I am glad that at least I am not alone. I began to think that it was only happening to me.

I have been gluten-free for 2 years and really don't crave many foods that have gluten in them at all, so it's not really that I envy free will of others. I never really liked eating that much anyway. But what bothers me is the lax attitude that others expect me to have about my own choices after they have tried the diet and cheated - on the surface, the diet seems easy, but as others have pointed out, it is much harder once you start reading and learning things on this board. It would be like me cheating on a diet that I mimicked from my friend who has diabetes and then telling my friend it was easy. Sure it is easy, because I know that any day I could stop the diet. I don't mind if people choose to go on the diet to lose weight or just because. I do get frustrated when their opinions are rudely placed onto my own personal situation.

I don't really think that I am in the stage of "poor me" anymore, but I am at the stage that I feel like everyone should just let me make my choices no matter what they may be. Just as one can make a choice to go gluten-free to lose weight, I can choose to be 150% careful to not digest any gluten so that I do not cause severe harm to my body and am not incapacitated for a month or more. For instance, I choose not to smoke but am ok with someone else smoking near me...I don't enjoy it, but do not speak a word. There are people who are adamant to never be around cigarette smoke, I have never once told them that it is no big deal to be around smoke or suggest that they expose their self to the smoke. That is their choice and I do not feel the need to question or sway their choice. I am just confused on why others feel this way.

I think if I have a chip on my shoulder about anything, it is about people who cannot just let things be.

[imhungry]

Wow! This is a great thread to read.

Meline - nicely said and so truw.

Fiddle Faddle said: "my reflux dramatically decreased; I was able to lower my thyroid meds by 50%; bloating, cramping, and diarrhea disappeared; my energy level came back to normal; my eyes were no longer dry; joint pain disappeared. and no thanks to the doctors" Me too! My Gastroenterologist gave me a pill that I could take 6-8 of them each day and said that if he could figure out why the intestines spasm he'd be rich... I used to take 3 prilosec a day with no relief and even was considering surgery. When I would do the 24 hour probe it would show up with nothing abnormal... Now I take NO prilosec!!!! No more reflux.

And you are right, we do need to shout this from the rooftops. It's ridiculous how they can get away without listing ALL ingredients.

AndChloe - I am glad we were able to help. It is somehow better when you know you are not the only one.

Take care all.

[dbmamaz]

BTW, a long, long time ago I was a cook at a pizza hut. We had an order for a cheese-free pizza - i was flabergasted, but my boss said that it happens occasionally, some people are allergic to cheese or just dont like to eat it. He put the sauce on, and toppings, and baked it - so chances are, you could have had that, too.

[Fiddle-Faddle]

Chloe, it really doesn't sound like you have a chip on your shoulder. It does sound like the people around you have something MAJORLY wrong with them!!!!! Maybe in some weird, twisted, totally ignorant way, they think they're helping you have more options or something, but they need a major reality/sensitivity/intelligence check.

I have had people ask me if it is hard to be gluten-free, and I always say it's easy when I'm eating at home, but that it IS hard if I have to eat out.