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How Do You Make Then Understand What It Is!


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#1 roddi

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Posted 02 January 2005 - 12:06 AM

Hi there,
I am getting a bit frustrated at going to relatives homes and friend's places and then not being able to eat their food. Tis life, so be it. As of late, i've been a pro on what i can and cannot eat. Generally I'll dine on my time before going out, and often will say 'i won't eat with you as i have special dietary needs'

Coming from a big italian family etc, often people look at me funny when i say 'i cannot eat this' or etc etc .. and it's annoying the heck out of me, when people make ignorant comments like 'oh he's allergic' or 'he's fussy' ..

I was a bit annoyed this evening when i went out for dinner with relatives, who told me what was in the potatoes, and they made steak for us all, ..well, they marinated the steak with something with hydrolyzed wheat protein, anyhow, i was a bit ill after.. but here's the thing..

It's a bit embarassing excusing myself to use their 'upstairs' washroom etc, .. and people always ask what's wrong, and .. i'm not on a mission to educate people, but it bugs me when people downplay this.. because of their ignorance, and since they can eat whatsoever they wish, they assume i can as well.

I used an example from the newsgroup and told a relative, .. eating gluten is very toxic for me.. ..it's not like an allergy, .. it's very severe.. and they looked at me as if i was mentally retarded.. as if something such as this can cause such a reaction .. (unlike peanuts)

I would like some advice on how to cope with this issue.

thanks
rob.
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#2 darlindeb25

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Posted 02 January 2005 - 03:29 AM

;) well rob--it's always going to be this way until celiacs becomes well known like diabetes--- :angry: there will always be the people who refuse to understand-- :unsure: then there will be the group that tries to understand, but really has no clue what wheat is, :) then you will have the group that spends the time to research what you can and cant have and will put their best effort forward, but you should still politely ask what they used, just to be sure and then remember to thank them for caring :D my motto is: if in doubt, dont touch it :P eating away from home will almost always be chancy for us--for family dinners i always had it pretty easy because my sister is celiac and now my dad too, so everyone watches out for us--at christmas this year, my oldest son finally is trying to understand--he ran to the store to buy rolls for his wife and called and asked which kind i can have :rolleyes: , but he is trying to understand--gotta love em :lol: deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 lpowmacback

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Posted 02 January 2005 - 04:59 AM

Rob, why not try to educate them just a bit? Why not tell them, in simple terms, what happens to the intestines upon injesting gluten. Explain how your own body attacks your intestines, damaging them enough to cause malabsorption problems and much more... even the possibility of cancer.

I am not an officially diagnosed celiac, although my doctor highly suspects it, and I went gluten free a week or so ago. I went to a New Year's Eve party at a close friend's house and while we (and others) brought lots of food that I could/would not eat, I also brought food I could (just for me). I had explained the situation to my friends, and they were fine with it! I explained it simply like I'd mentioned above and they did not push or prod me... I also explained that I enjoyed what I was eating!

Perhaps if they have some understandable scientific explanation, it won't be such a mystery to them.

Good luck!

Lisa
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#4 tarnalberry

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Posted 02 January 2005 - 11:15 AM

I've got to agree that - if they are ignorant of thing - a bit of educating is the only way for them to stop being ignorant. Of course, they might not listen at all, but when they ask what's wrong, you can tell them "apparently there was something in the food that had wheat - it's made me sick". Of course, the suggestion not to eat at someone else's house has a lot of merit - particularly if they've made you sick once before. It may hurt their feelings, but a simple, friendly "I am not feeling healthy enough to take the risk of internal damage from the food, but I'll still enjoy the company" needs no further discussion.
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#5 MySuicidalTurtle

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Posted 02 January 2005 - 07:41 PM

"I am not feeling healthy enough to take the risk of internal damage from the food, but I'll still enjoy the company"

I like that part!

I am not in too many situations where I have to go into detail about Celiacs but usually people who think it super odd or want to know more ask the "is it like a peanut allergy" and I always say, yes it can be. It makes sense to them peanutallergy is very serious then celiacs is very serious.

There really isn't anything to do when people don;t want to listen or downplay what we have. You have to picky and dussy and know exactly what is going on and what is going into your body because you know the damage it causes. But it is hard to try and ignore them and the feelings they make you feel. Just know that, despite their thoughts, you are doing what's best for you at the end of the day and that you're not alone!
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#6 roddi

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Posted 03 January 2005 - 08:42 PM

thanks guys..

i agree re: the educating part.. but these people were like 'what is this nonsense' and they downplay it because of the reasons u said, .. not as public as diabetes etc.

when u eat something at someone's place with gluten,.. do u tell them.. i was told i was eating regular steak, i ended up eating steak with all this marinade which had hydrolzed wheat .. i was fuming!

r
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#7 darlindeb25

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Posted 04 January 2005 - 03:01 AM

;) rod--there will always be people who refuse to listen or beleive you :( --my sister was diagnosed with full blown celiacs--my dad and i are both celiacs, yet my brother says it is all in our heads and says, "let me feed you, you will be fine then!" he looks at my dad who has gone from a strapping 260# down to 167# and declares its "because you gave up good food!"--he wants to make us all barley soup :angry: he will never understand--i just hope neither of his kids or his grandkids are celiac and i know, given the chance he would sneak us gluten just because he truly believes it is all in our heads :( and he wouldnt be doing it out of meaness, just ignorance--he truly believes we are being foolish--its up to you to either do the best you can to educate these family members or do the best you can to just smile and walk away :rolleyes: deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#8 MySuicidalTurtle

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Posted 04 January 2005 - 10:52 AM

If I ate at someones house and was told everything was gluten-free and then found it to be clearly not gluten-free then I would be mad. How dare the do that damage to you! I dont think I would trust eating at anyones house for a long time and would let them know that.

Deb, when I was little, before being diagnosed (and when I still ate animals), one thing that I always had a problem with was non-beef hotdogs. My Dad never understood it and thought it was all in my and my Mom's head. . .she always bought them . . .and then one day he decided to buy hotdogs and hamburgers and have a cookout. He bought non-beef ones but saud they were all-beef, so that I would eat them. I got sooo sick. He felt terrible about it and from that moment on knew to take those things more seriously because soemthing was wong.
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#9 calico jo

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Posted 04 January 2005 - 02:52 PM

Most of my friends are very understanding of my problem, but I'm constantly asking for EVERY ingredient that was put in anything and then I have them get the bottles/containers for me so I can read them all. If anything is questionable i.e."flavor" and it's not a name brand I trust (Kraft, ConAgra, General Mills, McCormick...to name a few--they will ALWAYS list something that is derived from Wheat, rye or barley)

If you get sick at someone's house because they fed you gluten, after you specifially named off "NO WHEAT" I'd make damn sure to let them know that is WHY you got sick. It'll help in educating them as to the effect it has on you (heck, I'd be tempted to use the DOWNstairs bathroom and make sure my hurls are nice and loud)

To have this brushed off as nonsense makes me very angry. Maybe you can arm yourself with a short news article on celiac disease and read it to people. Each time you ingest gluten you are damaging your insides. Each time those insides are damaged, it affects your tissue and makes you more susecptible to other ailments...like even cancer.

Until folks get a handle on your food issues, I'd make sure to bring your own. You need to protect your body, even if it means hurting other's feelings.
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#10 debmidge

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Posted 13 February 2005 - 06:03 AM

Roddi

Your friends/family reaction is a common one. There's only one way to correct them and that is to provide the education materials that describes celiac and the ramifications of not eating gluten free. Although that won't guarantee that they "get it in their heads correctly."

My husband was healthy when I met him. Three years later he developed celiac disease, but we didn't know it. Then after that for years my family shunned my sickly, misdiagnosed celiac disease husband.
They assumed his celiac disease (actually he was misdiagnosed for 25R+ yrs as IBS) was all in his head only because he had no relief from his digestive complaints and none of the inept doctors he went to could find the cause, other than the IBS diagnosis.
It was the same story year after year - bowel problems, indigestion, weight loss and inability to hold down a full time, unskilled labor, job.

The family labeled him as having a "character flaw" and their treatment of him reflected their belief.

When he got sick and was living at home, even his own mother refused to make special foods for him when we thought it was just IBS even! She figured if he was hungry enough he'd eat her macaroni and sauce and meatballs. (she doesn't conveniently remember this now and neither does my husband, but I do).

Well he just kept getting sicker and sicker and then we married anyway and I provided him with a good diet for his IBS. He rallied, but then every so many years came down with more strange conditions. He went thru about 4 G.I.'s until 2003 when he finally found a gastro who knew what celiac disease is.

It's my opinion that when it comes to food, the family sees a digestive problem as a reflection of their food as if they should be saying "What, my food isn't good enough for you?!!" They take it personally instead of realizing that what you have is still a rare condition. They seem to think you are a bother (now they have to cook more than one main dish and side dish and this is too much for them to think about).

I once knew a woman who had two beautiful normal kids, when she had her 3rd she was in her 40's and the doctor told her the child had Downs Syndrome. The child was beautiful nonetheless, but from the day that child was born the mother did everything she could to prove that the child did not have Downs Syndrome. She enrolled the child in dance class, piano class, horseback riding lessons, etc. all in an effort to prove the doctor wrong. The child failed in much of her endeavors and was withdrawn from the class, only to have the mother enroll her in something else just as difficult for her. Well the classes didn't work, but I will say the young woman has had a nice life, better than "normal" people, but for all the things the parents did for her did not make her normal. They did not prepare her for the things she really needed to know in life (i.e., the stuff she needed to know to take care of herself when her parents are gone for instance).
The parents were too busy overlooking the real problem and neglecting what they should have been doing. Sometimes this is how family reacts to anyone with a condition they cannot relate to. Due to years of undiagnosed celiac, my husband could not digest fruits and vegetables and garlic/onion/spices. Again, his family claimed that it was all in his head.
At his endoscopy the new GI discovered he had ulcers in his small intestine - well I guess that's the reason that non-gluten foods bothered him for years. Last year, a little after his official celiac disease diagnosis, my husband's sister sneaked garlic in one of the gluten-free foods that she was making for him. When he tasted it, he was incensed but he didn't say much, he just rinsed the piece of chicken off under water. Later on in the kitchen, she told me exactly how she felt: that his avoidance of garlic was a mental thing. So even when you educate them, they still remain ignorant.

So it ended up that we did not eat at family meals as it was too much of a bother for both sides of the family - and too much agita for us.

So educate them, and if they don't respond do what you need to do for yourself and if that means that you visit them without eating their food, so be it. You can't be anything less than who you are.

D
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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

#11 stef_the_kicking_cuty

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Posted 13 February 2005 - 10:30 PM

Hi Roddi,

your family is italian? Well, do you live in Italy or in the states? It would probably help, if they would know, that in Italy each new kid who comes into school gets tested for celiac. That's why the number of diagnosed celiacs is the highest in Italy at the moment. Please, guys, correct me, if anything new already occured. But, in case you speak italian, try to make a search in the internet on an article about 'celiac and Italy' in italian language (i couldn't find one in english). You might find out something very interesting to show them.

Hugs, Stef
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#12 SharonF

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Posted 04 April 2005 - 01:33 PM

I heard it described this way, when someone insists that a little bit of gluten won't harm you:

Ask them if just a little bit of rat poison would harm them?
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#13 skbird

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Posted 04 April 2005 - 02:54 PM

Yikes, this tread reminded me I'm having dinner at my MIL's tonight for the first time since going gluten-free. I have been on a hypoglycemia diet for the last 3 years and it's all I can do to get her to understand that - and she doesn't understand most of it at that. Still is disappointed I won't eat any of her deserts she makes, pasta, white bread rolls, etc. I have been over there once since going gluten-free but brought my own Amy's mac and cheese rice pasta meal. She was very disappointed I wasn't eating her food but it was a buffet-style meal and so the pressure wasn't on me so much. I really don't think she's going to understand this new "request" from me, though. Sigh.

I feel your pain (uh, I hope not literally!)

Stephanie
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#14 ianm

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Posted 04 April 2005 - 05:38 PM

People either get it or they don't. I just reached a point where I don't care if I offend someone or not because I won't eat their food. It's my body and I will protect it by any means necessary. I was too sick for too long to be put out of action just so I won't hurt someone's feelings. It's my body and if someone doesn't respect my right to keep it healthy then they won't be a part of my life anymore. Real freinds don't let celiacs eat gluten!
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
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Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#15 KaitiUSA

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Posted 04 April 2005 - 05:49 PM

I agree with Ian....I got to that point to...my health is more important then to worry about offending somebody about food.
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