It's All In Your Head

[splash]

I have been gluten free (with a few setbacks) for one month, and I'm getting used to the diet but have come across a number of people who are unwilling to help or sympathize. I can relate to the attitude, because until now I've been very skeptical of people who claim to have allergies. So when I request a different dish or am slipped some imitation crab meat in my lunch and I'm told "it's probably just psychosomatic, just don't think about it," what is the best way to react?

All the evidence tells me to ignore those comments, because off gluten I feel amazing, energetic, and I can even see better! My doctor agrees that my anemia and folate/B12 deficiency is caused by celiac. And the effects of gluten are painful and immediate. Still, I'm pretty sensitive to the naysayers who don't believe that this is a real problem, and it doesn't help that my blood test came back negative. What's the most effective (and quick!) response to convince others that I can't have ANY gluten?

[stef-the-kicking-cuty]

Next time reply: "How would you react, if I would offer you some poison and then tell you 'it's probably just psychosomatic, just don't think about it'"? If they stare at you like you have three heads, say "see, that's what gluten is to me".

[melmak5]

Well... it was possible cross-contamination the landed me in the ER Tuesday for 6.5 hours.

You don't really have to convince them, but I sure as hell wouldn't trust them with the handling of food.

Sometimes I have to grab people and say "no, it really is that serious. I vomit, bloat, cannot button my pants, am in pain, poop for days... literally and bleed from my rectum."

Some people equate it with a peanut allergy, but I don't, cause its something different that happens in our bodies. Sometimes I use my fingers as "demonstrative villi" and use my opposite hand, in a pac-man like shape and motion that my body attacks gluten and my villi and I get sick. And I don't want to get sick, or get cancer, or osteoporosis, or any of that, so yeah NO GLUTEN. (This works best with "chomping" sound effects.)

Luckily, I have only been around people who have seen me at my very sickest, so they KNOW what gluten does to me and they don't want it to happen again. For the others, I try not to take it to heart. I also try to make it really clear that I cannot eat anything that has even TOUCHED gluten. Sometimes this helps a bit with the "but its only a little bit."

Good luck and its not in your head, its in your guts and you gotta protect those little villi!

[Katydid]

Hi Splash-

Part of the reason you are so sensitive to other peoples comments is because you are relatively new to this. You will find that in time this will diminish.

In the meantime, just pretend, lie, or whatever it takes to back them off. Sometimes just saying "Would you knowingly eat something that you knew was going to make you sick?" is all it takes.

I will say though. that the need to defend your diet never really goes away, you just get better at it. My husband is the celiac; and even after 20 years, it can still be a little embarrassing with him in a restaurant. When he asks a waitress about gluten content and she says I dont' think.......he stops her right in her tracks and says 'I don't care what you think..go to the kitchen and find out for sure because I get very very sick and that makes me very very mad.' I know this may sound very rude, but it works; and I have learned to live with it.

Its amazing that we human beings sometimes care more about what other people are thinking that we do our own health. My celiac granddaughter went to Minneapolis for the weekend a few years back with some friends and didn't want to stand out and be picky about the restaurants they chose; so she just decided she would just eat what everyone else ate and get sick and then she'd get over it . Well, by Tuesday morning she was so sick and so weak, she had to call my husband to drive her to the hospital. She was so dehydrated that they wouldn't let her leave until they had given her two iv's. It was a good lesson for her because now she has become very outspoken about her dietary needs regardless of what anyone thinks or says.

My very best wishes and good luck to you as you embark on this new life style. You are off to a very good start with this forum. These folks are magnificent and have a wealth of information. Where else could you vent to thousands of willing listeners?

Kay

[KAG]

It always amazes me how people think about food. If someone were to offer me a cookie and I say that I can't eat it because I have allergies, they can get really offended. I usually have to say something like, "you don't want to know what will happen to my intestines if I eat that" before they will stop pushing. I usually just say I have really bad allergies and I REALLY wish I could eat cookies and how much I miss them. Then they will feel sorry for me. And then I usually get something like "you can't eat bread then either". When I tell them no, then I get the "no wonder you are so thin". I guess when I go for the sypathetic vote it makes it easier on me.

Whenever I try to just say that I am trying to eat healthy, they will get really offended that I have the willpower to not eat a cookie and they get offended. So I stick to the "I really wish I could eat that but can't" attitude.

It is really hard for me to lie and I feel funny doing it, but you will come up with a standard answer that will make it easier for you. Just practice, I guess.

I know that no matter what anyone says, I feel sooooo much better without gluten. And it really is getting more attention, so I am sure that more people are becoming aware of celiac disease.

[EBsMom]

So when I request a different dish or am slipped some imitation crab meat in my lunch and I'm told "it's probably just psychosomatic, just don't think about it," what is the best way to react?

Ack! If someone said that to me, I think I'd launch into a very graphic and detailed description of how gluten damages my intestines - to refute the psychosomatic assertion. What an incredibly rude thing for someone to say!!!! I don't know why people are so blase about the health of others.

It does get easier each time I have to "defend" our diet. What is interesting to me is that I'm fierce about asserting my kids' dietary needs (gluten-free for both, also cf and no soy for dd) but have more trouble speaking up for myself. I think a psychiatrist would have a field day with that one, lol! Having glutened myself a couple of times (ugh) has made it easier for me to speak up, though. I'm guessing that that in a year or so, I'll be downright good at it!

Hang in there!

Rho

[Guest j_mommy]

It's very frustrating!!!

With time it does get easier....I've been gluten-free since may and I'm getting better at it!

Friends and Family...I just tell them it's my body and I want to feel better...they also know about celiac(I have given repeated lectures!!!LOL) But there are a few that still don't believe...oddly enough it's the family members with symptoms that don't believe...can we say denial!!!!

Most of teh time I just ignore...not worth my time or effort to give into to people...you're not going to change their way of thinking!!!!

I just go one eating gluten-free and feeling better!

good Luck!

[rsm]

I like to ask "How much poison ivy would you eat?"

[Yellow Rose]

I like to ask "How much poison ivy would you eat?"

Ha!! I loved that answer. Really puts it in perspective.

Yellow Rose

[loco-ladi]

I had a female conductor a few weeks ago whose son had been telling her for a couple years about his, she was the "its all in his head" type of mentality, until she offered me a cookie.... I refused saying sorry I cant I have food allergies, she replied, oh its ok there's no peanuts in these, my response.... thats great but I can eat peanuts its the gluten I cant have, this developed into a very interesting conversation where when it ended she called her son and while crying appologised for poisoning all his life and not believing him.

One "nay-sayer" down, millions to go...

[imsohungry]

Melmak,

I love your packman demonstration!

RSM,

I'll take a plate-full of poison ivy please....to go...sprinkled with wheat crumbs!

Loco lady,

I'm sure you know that, technically, celiac isn't an allergy. However, if the person I'm speaking with "can't get the concept"...I've been known to say "allergy" a time or two myself...especially, if I'm trying to order dinner out and am really hungry.

Splash,

In the beginning my mother had a hard time understanding, she called it that "strange diet you're on" and refused to try anything baked or purchased labled gluten-free. It was as if she thought the ingredients came from an alien planet She would tell me, "what you need is some good home cooking and your bowels will regulate and you'll feel more energized." So, at thanksgiving, she made a lovely "healthy" dinner...full of gluten.

It's amazing how things change. Now, after she has been diagnosed with colon cancer and my aunt has also been diagnosed with celiac, she understands. My mom is a wonderful cook, and if she knows we're coming, she bakes me special gluten-free goodies. She also keeps food around her house that I can eat and calls me if she found a good recipe that happens to be gluten-free.

Splash, I have many, many diagnoses.....they are all HIDDEN disabilities. It is hard for people to understand what they can't see.

My best to you. Remember though, some people will eventually "get it" regarding your celiac...some people never will. Just move past them.

Julie

[EBsMom]

But there are a few that still don't believe...oddly enough it's the family members with symptoms that don't believe...can we say denial!!!!

LOL! That's the same in our family. My f-i-l is a walking laundry list of celiac symptoms and he's the one who refuses to talk or think about it the most vehemently. Denial, indeed!

Rho

[libbyann]

It's sad that people don't even try to understand. My own mother can't seem to remember that I don't eat wheat. Last time we were there for dinner, she cooked macaroni and cheese, garlic bread, and meatballs made with bread crumbs. Which left me only salad and vegetables to eat. It annoys me because my father & sister are both diabetic, and my mom is very careful about sugar. In fact, my sister is on dialysis now and has a very strict diet, and mom worries over what is okay for her to eat.

I try to say, oh, well, and just take care of myself. After being married to a verbally abusive alcoholic for 9 years, I finally quit trying to change him and left. He wasn't going to take care of me. He ignored all my other health problems, which I won't go into now, and eventually I realized that this is my life, these are my problems, and I've got to be in charge of it. For whatever reason, my mother is not going to cook wheat-free for me, and that's the way it is. I know when I go to her house, I can either raid the fridge on my own (she doesn't mind) or wait till I get home to eat.

[JNBunnie1]

I've actually never had a problem in a restaurant, even ones who've never heard of a gluten free menu. I just say I can't have anything with wheat in it, and ask to see the ingredients in anything that's suspect, and noone's ever given me a hard time. I had one waiter cut the ingredients list off a box and bring it out because he wasn't sure!

[Judyin Philly]

One "nay-sayer" down, millions to go...

I JUST LOVED THIS ONE.

JNBunnie1 --I had one waiter cut the ingredients list off a box and bring it out because he wasn't sure!

I ASK FOR THIS ESP MASHED POTATOES..(CAN'T HAVE ANYMORE.. ) B/C USUALLY WITH MILK & BUTTER I'VE HAVE THEM SOMETIMES TAKE A B/POTATO AND GUT IT AND MAKE SOME FOR ME. OR I JUST GET B/POTATO IF ON THE MENU..

I ALWAYS TAKE MY 'THOMPSON' CARDS' INTO ANY RESTURANT...AND JUST SAY...

"I'D LIKE SOME CHICKEN' (IF ON MENU)-- "IS THERE A WAY THE CHEF CAN MAKE SOMETHING FOR ME...WITH THESE GUIDES LINES?"

AND FOR FISH...MANY CHEF'S LOVE TO MAKE SOMETHING SPECIAL AS THEY GET TIRED OF THE SAME OLD THINGS.

BUT...WE DO NOT ....GOT OUT TO EAT OFTEN..HUBBY AND I ...ABOUT 10 TIMES IN 2 YEARS+.....BUT THERE ARE NOW 2 RESTAURANTS THAT I GO TO DURING THE DAY WITH FRIENDS AND THEY ARE ....WONDERFUL TO ME...BUT...............IT'S TAKEN ALLOT OF TRAINING AND A WILLINGNESS ON THEIR END...

SO ...PICK THE RESTAURANTS CAREFULLY...AND I ALWAYS AM 'EXTRA SWEET TO SERVERS' AND LEAVE A BIG TIP. I DEAL WITH THE CHEFS FIRST BY CALLING AHEAD BUT NOT AT BUSY TIMES.

IF I CAN'T CALL AHEAD...I DEAL WITH THE CHEF.

I KNOW THIS IS ABOUT FAMILIES\ FRIEND ACCEPTANCE...SORRY BUT--

MY 2 WEEK TRIP TO VISIT FAMILY IN CA...HAS BEEN WELL DISCUSSED AND DOCUMENTED HERE GRACIOUS, IT EVEN APPEARED ON GOGGLE IN EATING OUT.. GLAD HUBBY'S FAMILY DOESN'T COME HERE.

IT GETS EASIER...WE JUST HAVE TO LEARN HOW TO NAVIGATE IN THE 'REAL WORLD' AND IT'S NOT ALWAYS A SMOOTH RIDE.

GOOD LUCK.

JUDY

PS..PLEASE OVER LOOK THE CAPS...JUST MY EYES.

PSS...CAN'T LOSE FAMILY BUT FRIENDS...I'VE LOST MOST OF THEM AS I'M TOO HIGH MAINTANCE FOR THEM..BUT THE FEW I HAVE ARE DEAR OLD ONES...AND MOST FRIENDS NOW...ARE ON LINE.

[splash]

It's so helpful to hear all the different ways that everyone has learned to deal with this... it's true that this forum is so valuable to keep from going crazy, or thinking that I am! I love the poison ivy quote - so true, how much would anyone be willing to eat? I know that after that imitation crab bite I had last weekend, I'm not willing to eat one iota.

JudyInPhilly and LibbyAnn, my heart goes out to both of you especially. I can see now how people are closed-minded (I think I have been pretty uncaring about other's needs in the past) and what a challenge it is to accept that you can only try so hard to explain and then have to move on. But I also think that there are lots of caring people in the world who are not going to be so impatient, you just have to have the confidence that this disease doesn't change the great person you've always been, and others will see that and admire you for it. It's just wheat, for goodness sake! It's not like you're asking people to stop wearing clothes around you!

All the comments are encouragement that there's no reason to sit home moping about this. And I've been lucky that many of my friends and family have taken it seriously and even had fun with it. There's a whole world out there that is still to be enjoyed, including restaurants and chefs that are happy to help (I just have to learn not to take it so personally when they aren't - just eat somewhere else!).

Good for you for demanding respect from your friends and family. It shouldn't require so much effort to get through to someone about needing support, and if it does, find support somewhere else!

So next time someone doesn't believe me when I say that soup, or whatever, made me sick... I'll tell them why don't I throw some poison ivy in theirs and see how quickly they can pretend like their stomach is bloating with pain, too

[JNBunnie1]

It's just wheat, for goodness sake! It's not like you're asking people to stop wearing clothes around you!

HAHAHAHAHAHAHAHA!!!! I'm gonna remember that one!

[hathor]

So next time someone doesn't believe me when I say that soup, or whatever, made me sick... I'll tell them why don't I throw some poison ivy in theirs and see how quickly they can pretend like their stomach is bloating with pain, too

I really like what someone else recommended on a different thread. (Sorry, I can't remember who, so I can't give the proper credit.) If offered something with "just a tiny bit" of gluten in it, say you will eat it if the offerer eats "just a tiny bit" of Ex Lax. Then you can share the experience