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Hummingbird4

How To Do This Without Feeling Like A Freak

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I am so frustrated. It's been almost 3 weeks since I "decontaminated" my kitchen. The rule we all decided on was no gluten in the kitchen. Sounds doable, right?

Today is my husband's birthday, and we were planning to go to my in-laws for dinner. My stepmom gave my DH a pie last night. I didn't want the pie in my gluten-free kitchen, so we were going to bring it tonight to my in-laws'. Well for one reason or another, MIL decided she didn't want to host dinner at her house and how about bringing it to our house. Including a cake (and of course we still have the pie that I don't want in my kitchen).

I feel like a big b!tch saying no gluten in my kitchen, but I didn't go through that huge cleaning process for nothing. But I don't want to ruin my husband's birthday either.

Also, we're going on a trip next week for 5 days - flying across the country to take our son to college. I'm afraid to eat in restaurants, and I just don't know how I'm going to deal with my food issue.

We went to my parents for dinner last night. I ate some of the food there (the potatoes I brought, the ham that I checked the label on, and salad. Mom bought me special gluten-free rolls :).) Went to a friend's house for dinner the night before last. She was careful with the foods served and made me a special bowl of berries for dessert :) Still, I feel like I'm a lot of trouble, and that I appear to others like I think the world revolves around me. Feeling very sorry for myself today. :(

I'm just venting - I'm sure you can all relate. If you have any advice, I'm all ears.


Diagnosed Celiac in June 2008 by biopsy and blood tests.

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

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Venting is okay that is what we are here for...to listen! =]

First off you are not a *****.

Secondly you need to be open with your family about celiac disease because you need there support. Politely tell them that for your own health benefit your kitchen is gluten free and that is how it HAS to be for you, because that is how you are choosing to do it, if they don't understand explain to them having all gluten free stuff keeps you from having temptations.

Fast food and restaurants. Try to avoid it, go to a health food store (or where ever you go to get gluten-free food) and get gluten-free foods. Get solid foods for the plain, and get other stuff when you get to your destination. Eat before you go out and try your absolute hardest to avoid gluten.

Hope this helps!

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Hi There,

I'm getting ready to take a trip, too - and here's my plan. I am packing Glutino breakfast bars, Bumblebars, Lara Bars and Think Thin Chunky Peanut Butter Bars. If for any reason I feel I cannot dine with everyone else, I intend to eat one of these bars and a piece of fruit and only drink iced tea in the restaurant with my family.

I don't eat meat, but I know people who buy gluten-free jerky for travel, too. Protein really helps.

So, get thee to a Whole Foods, or health food store and stock up. When you arrive at your destination, buy fruit for your room, Rice Chex if possible, and try to keep positive. I know I won't be enjoying all that my city has to offer gastronomically, and I have to accept that. As long as I am fed, and remain well - that will have to be enough.

As far as everyone else goes - after a while it's like water off a duck's back. It really does get easier. I have my moments - don't get me wrong - many people don't even want to understand this disease, but being well is so worth all the flak.

Enjoy your trip, sounds like a momentous one!

Best, Karen

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If it makes you feel any better, I feel like a freak too. Its been about a month of gluten free for me and its not getting any easier for me. Just more frustrating. I wish I had something to say to help you, but I just feel your pain.....


Female,37

Diagnosed by biopsy first, then bloodwork

Gluten free since 7/08

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Took me about 6 months to make it all habit. And for everything to sink in emotionally too~ B)

BE PATIENT WITH YOURSELF!

You are bound to make mistakes... but you will learn from them!

sickchick


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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I'm getting ready to go to San Francisco and Yosemite with my family and I'm pretty worried about the food issue, too. I have bought a ton of bars, and a bag of Glutino pretzels and a box of Rice Chex...I may need extra luggage just for the food! My biggest concern is the wedding we're attending. I think I'll be too afraid to eat there. And the rehearsal dinner is at an Italian restaurant. Very daunting.

We just got back from our annual week at the beach, where I mourned a whole new list of favorite foods I can no longer have (just went gluten-free in June) like fried clams, coconut shrimp, etc. This whole summer feels like one food ordeal after another. It seems like I am constantly drawing attention to myself and talking about gluten. I must be so boring!

I am finding it easiest to be home. Eating out is really unnerving.

Good luck to all my fellow celiac travelers!

CCR


diagnosed 6/08 by biopsy

son diagnosed 7/08 by biopsy

niece diagnosed 10/08 by biopsy

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Congratulations on sticking up for yourself and insisting that your home be safe for you. Had you given in there is a good possibility that no one would ever take you seriously. Being assertive and most importantly consistent was the best thing you could have done. :)

There is a difference between being assertive and being a "witch with a b." ;):P:rolleyes:

If you are eating successfully in other people's homes, you are doing great!

Do some internet research on restaurants where you are going. Choose wisely and use the same assertiveness on the wait staff. Asking to speak to the manager is a good idea, too.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Grrrrrrr, my mother-in-law made me so mad tonight! We did end up going to her house after all. She said that the salad she made was gluten-free, and so was the chicken salad my sister-in-law brought. Great, right? After we got there I could tell that MIL was in a "mood," and she asked me if I could eat something that had been mixed in a bowl that had been used for food with gluten in it. I said no, not without washing the bowl first. And she said (and I quote): "I didn't know you were going to be so fussy about it." I said it's not being fussy, it's an autoimmune disease and the tiniest little bit can trigger it. Then she basically repeated the fussy comment, as if she didn't listen to a word I said. Arrgh!

Then she proceeded to question whether I really have celiac disease. She doesn't believe that I can have it because I was asymptomatic. I explained about the biopsy, and the antibodies blood test both being positive. She acted like that didn't matter, I should seek another opinion. (and apparently I shouldn't be so fussy!) :angry:

She just made me feel like I was a burden. I was so upset I actually went into the bathroom and cried.

After dinner she dished me up some ice cream with cherry pie filling. I had no idea what was in the pie filling, plus she had used the same spoon for my ice cream that she used to spoon ice cream on top of the cake for others (tapping the spoon against the cake to get the ice cream off). By this point I was too intimidated to say no thank you, so I pawned my bowl of ice cream onto my son.

My stress level is through the roof. (Son going off to college next week might have something to do with it.)


Diagnosed Celiac in June 2008 by biopsy and blood tests.

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

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I feel really bad for you. :( My only suggestion is: buy her a book on Celiac, then its her choice to read it or not. She wont understand until she understands what Celiac is.


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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Grrrrrrr, my mother-in-law made me so mad tonight! We did end up going to her house after all. She said that the salad she made was gluten-free, and so was the chicken salad my sister-in-law brought. Great, right? After we got there I could tell that MIL was in a "mood," and she asked me if I could eat something that had been mixed in a bowl that had been used for food with gluten in it. I said no, not without washing the bowl first. And she said (and I quote): "I didn't know you were going to be so fussy about it." I said it's not being fussy, it's an autoimmune disease and the tiniest little bit can trigger it. Then she basically repeated the fussy comment, as if she didn't listen to a word I said. Arrgh!

Then she proceeded to question whether I really have celiac disease. She doesn't believe that I can have it because I was asymptomatic. I explained about the biopsy, and the antibodies blood test both being positive. She acted like that didn't matter, I should seek another opinion. (and apparently I shouldn't be so fussy!) :angry:

She just made me feel like I was a burden. I was so upset I actually went into the bathroom and cried.

After dinner she dished me up some ice cream with cherry pie filling. I had no idea what was in the pie filling, plus she had used the same spoon for my ice cream that she used to spoon ice cream on top of the cake for others (tapping the spoon against the cake to get the ice cream off). By this point I was too intimidated to say no thank you, so I pawned my bowl of ice cream onto my son.

My stress level is through the roof. (Son going off to college next week might have something to do with it.)

I do feel sorry for you it is very frustrating at first. My parents are still getting the hang of it and it has been almost 3 years. I will go there for dinner and they make every effort to keep things clean, but if she makes her famous salad dressing and uses her mayo she doesn't understand that the jar has already been contaminated from when they made sandwiches prior. I think she is finally getting it. Sometimes she will make something and say but look it has whole wheat in it. Then I give her the look and she stops.

At first, I would say no to everything and I would question cross contamination and she would tell me that I am going way over board with this and I shouldn't talk about me getting sick if front of my daughter. She would say its not going to kill you if you eat a little bit. Finally I went on line and printed a bunch of stuff regarding celiac, cross contaimination and boy she really has turned a page. Every now and then she has a slip. But she is getting better. When she makes pasta sauce now she makes sure she doesn't use the wooden spoon to stir it and lets me bring my own pasta down already cooked.

I am sure you can handle your mother in law, there is a nice way to be mean and get your point across if you catch my drift. But where your son is going away to college it is not the right time. This is a very stressful, emotional time for you and the littlest things sometimes can just set you off. I was in your position 4 years ago and its does get easier.

Good Luck

Lorrie

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...she makes her famous salad dressing and uses her mayo she doesn't understand that the jar has already been contaminated from when they made sandwiches prior.

Oh shoot, I forgot about that. I probably got CC'd last night then.

Thanks, everyone for your understanding. I was surprised at my MIL's reaction, because my FIL was gluten free for a couple of years due to Crohn's disease, and she cooked gluten-free for him. So she knows the ins & outs of cooking & baking gluten-free, but they weren't super-strict about CC. Therefore, I shouldn't be super-strict about it either. :rolleyes:


Diagnosed Celiac in June 2008 by biopsy and blood tests.

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

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I thought that going gluten-free would be so easy since the majority of our meals consist of fruits, vegetables, nuts and only a few grains. For breakfasts and dinners we eat fruit salads and fruit smoothies and usually bread (which I though, no biggie to switch to gluten-free). Lunches are steamed vegetables, soups, salads, potatoes, etc. I make my own dressings and mayonnaise, so I don't have to worry so much about ingredients. Right? Yeah, right.

We've been gluten-free for a few months and some days I am overwhelmed at how much this diet really does change your life. We hardly ever eat out, but now it feels its not even an option! Instead of grabbing a bag of chips (cross contamination??) or crackers for a quick snack, everything has to be scrutinized and usually left on the shelf. We are also dairy free and soy free due to allergies, and I want to get a few snacks or cereals for my children to eat - for days where I'm too tired to figure out "the meal deal". If a product passes all THOSE inspections (gluten-free soy/dairy free) they are usually loaded with sugar to put them on a sugar high, or glued together with starches (which constipate my girls in a heartbeat very badly). At the health food store the other day I got so frustrated I left without anything but a few bags of rice pasta. It was so discouraging.

People don't realize how frustrating and downright aggravating this can be for us, so on top of all our issues, we have to deal with THEM. Some people will NEVER get it. Others will attempt to help, but they still don't "get it". Others think we exaggerate to the point of death, and are totally unsupportive. The only people who REALLY understand are those like sympathetic spouses who have dealt with our health issues, and others who have celiac or major food allergies. I have found there are no words for those who say "Are you sure you really have that?? Do you ALWAYS have to be so picky?"

I have learned not to trust the food of people like this. I was extremely allergic to dairy growing up, but my mom started to think I was faking it after awhile. I have no idea why......I loved the stuff! So she put milk in the mashed potatoes to "test" and see if I really got sick...if I didn't KNOW there was dairy in the food ahead of time. I was 12 years old. I got terrible stomach pain immediately and couldn't eat any Thanksgiving dinner. I went to my bed and cried from feeling so sick. She looks over at my dad like "Wow, she really isn't lying".....I found this out by overhearing conversation. Why would a mother do this to her own 12 year old child is beyond me. I do know that I can't trust the food she makes now either because of the comments she makes about my diet even now (13 years later).

What can you do? You fight the battle for your health, and get belittled for it. The best thing I can think is to stay strong, stay firm, and be the biggest finicky picky eater anyone saw if that is what is going to assure you your health. Make it your priority to be on top of things, because people rarely make it theirs.

Hope this doesn't sound depressing. Rather we have a battle to fight and we can win it! Don't let other people's comments and issues drag you down. Just keep going!

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I find that people don't really understand exactly what I am going through until they hae seen me during a reaction. Not that you want to purposely do that to yourself. My parents don't always get it either. The other day I stopped by for dinner and my dad was like oh I made stuffed zucchinni and it only has bread crumb on top so you can just pick it off. Well of course it doesn't jsut stay on top so i was washing off a piece of plain zucchini. And he says oh its only a little it shouldn't bea big deal. But I just ate mine plain and it was fine.

I tend to spend a lot of time at my boyfriend's parents house when we visit, and so they have seen me at my sickest and understand what happens when I eat even a little bit of gluten. I usually find out what we are having before hand and just get gluten free things to make alongside if necessary (pasta usually). There is always ice cream in the house in case I want dessert.

The thing that I find hardest is eating out especially at a party or buffet type of setting. How does everyone deal with this kind of party? CC is almost impossible to avoid.

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Congratulations on sticking up for yourself and insisting that your home be safe for you. Had you given in there is a good possibility that no one would ever take you seriously. Being assertive and most importantly consistent was the best thing you could have done. :)

There is a difference between being assertive and being a "witch with a b." ;):P:rolleyes:

If you are eating successfully in other people's homes, you are doing great!

Do some internet research on restaurants where you are going. Choose wisely and use the same assertiveness on the wait staff. Asking to speak to the manager is a good idea, too.

I agree 100% with this....

If you do eat out (and sometimes its unavoidable) then you will sometimes get caught out.

Having a 100% guaranteed REFUGE is an absolute lifesaver.....

This will also help you pin down the random events, you KNOW it cannot be in your kitchen then this reduces your confusion over just what might have caught you out....

This will REDUCE confusion for the family... for instance you get 'forced' into eating at an inlaws and then get ill.

You can then say you are 100% sure its not at home.... stay firm, stick to your guns ... and things will get easier.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Trips?

I have thought about this a lot, and there is no way to be sure other than to take your own food. It sucks, yes it sucks. Recently I went to visit a friend at college, not knowing what they would have to eat I whipped up some plain rice and chicken and took it along. I spent a good deal of the weekend eating... Rice and Chicken, but I wasn't sick and I didn't starve. Mind you this was just 3 days.

Looking at week long trips and such, I'm not really sure what I'll do either, but I'm sure I'll go with my best bet, take some food along. when we go out, I'll ask about Gluten Free. If they are clueless I'll get what I know, grilled chicken or steak and a baked potato.

I'm looking at going on a honeymoon in a year or so, and it really is just another step that you have to take. I'll be looking for a suite type room that has a kitchenette. Might cost more, but nothing like the piece of mind knowing I can whip up something if I can't go out!

Having family that is on board and supportive is a huge plus! They understand WHY I don't enjoy eating out (even if it's un-American).


Gluten free since August 2006! (Well, most of the time anyway)

New Oxford, PA

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Trips?

I have thought about this a lot, and there is no way to be sure other than to take your own food. It sucks, yes it sucks. Recently I went to visit a friend at college, not knowing what they would have to eat I whipped up some plain rice and chicken and took it along. I spent a good deal of the weekend eating... Rice and Chicken, but I wasn't sick and I didn't starve. Mind you this was just 3 days.

Looking at week long trips and such, I'm not really sure what I'll do either, but I'm sure I'll go with my best bet, take some food along. when we go out, I'll ask about Gluten Free. If they are clueless I'll get what I know, grilled chicken or steak and a baked potato.

I'm looking at going on a honeymoon in a year or so, and it really is just another step that you have to take. I'll be looking for a suite type room that has a kitchenette. Might cost more, but nothing like the piece of mind knowing I can whip up something if I can't go out!

Having family that is on board and supportive is a huge plus! They understand WHY I don't enjoy eating out (even if it's un-American).

Well, on longer trips I do my best....

its often not good enough.... so by the time its over I really need my refuge.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Well, on longer trips I do my best....

its often not good enough.... so by the time its over I really need my refuge.

So I guess you are a mild case like me? You can 'eat the stuff' and survive for a few days? It does come in handy in a pinch, but certainly not doctor recommended.


Gluten free since August 2006! (Well, most of the time anyway)

New Oxford, PA

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So I guess you are a mild case like me? You can 'eat the stuff' and survive for a few days? It does come in handy in a pinch, but certainly not doctor recommended.

Nope, I react to the tiniest amount....

I react the same to a pizza and beer as I do to a breadcrumb or cross contamination.

However the most serious symptoms come during withdrawal.

Once you have gluten in your system you produce antibodies and stress out the system.

It is not a matter of how much...

Peoples reactions differ, some people get constipation, others get the opposite and many get a cycle of both.

Many do not even react noticeably in the intenstines but get nerve damage, depression or hyperthyroidism.

Quite honestly I can live with some D and stomach cramps.... pop some imodium and ignore the cramps. The peripheral symptoms are much much worse.

However regular consumption of even small amounts can lead to many complications without even knowing it.

There are many people here who had no intestinal clues at all until they were diagnosed because of some other condition.

I would never encourage others to do this but when I have been caught out a mixture of slow drip of gluten (beer works for me) and imodium usually keep the worse symptoms off until i finally crash....

Did you know that smoking prevents celiac disease... it's clinically proven. I do not however encourage people to smoke to control the onset of celiac disease.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I'm just returned to my own refuge after a week staying with various family members, and I'm exhausted. I have a wonderful, kind family, and I'm not the only one off gluten. But I am the only one that checks out every packaged food I at and the only one who worries much about cross contamination. Both my mom (Dad's a celiac) and my sister (she and her oldest are GI) keep thoroughly mixed kitchens. They try to wash things carefully, but they share pans and utensils, and the family grazes from gluten foods to everything else like nothing's changed - eating pizza or sandwiches and then picking cut fruit out of the bowl or chips out of the bag with their fingers.

It's so hard to protect myself in that environment without seeming to criticize my mom & sister for the way they do things. How do I tactfully refuse something my mom's been serving my dad for months or years? It's like I'm accusing her of not taking care of him. I do it, but I hate it.

Even when they make a point to do things my way - like serving the spaghetti sauce for the kids so they don't rub the ladle across their gluten spaghetti - I know they're only doing it for my sake, and I feel like a pain in the behind. In our family it was always a mortal sin to burden anyone with any fussiness, so even though they don't complain, it's mightily uncomfortable.

I know I have it so much better than many people do, but I still regret the intrusion of awkwardness into my treasured family relationships - especially since we live a couple of states apart, and visits necessarily require shared quarters and kitchens.

Hummingbird - is your husband at all willing to go to bat for you on this? Since it's his mother, I think it would be good for him to come to your defense. Forgive me if that's butting in too much.

Beth

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Hummingbird - is your husband at all willing to go to bat for you on this? Since it's his mother, I think it would be good for him to come to your defense. Forgive me if that's butting in too much.

That's not butting in at all! He did come to my defense when she made that "fussy" comment. But then he promptly forgot about it and didn't notice anything else she did or said. When I mentioned how upset I was (with MIL) on the drive home, he seemed surprised.


Diagnosed Celiac in June 2008 by biopsy and blood tests.

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

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Sorry your having such a rough time with the gluten-free adjustment :(

I think as much as its an adjustment for the person who goes gluten free, it's just as much of an adjustment for our friends and families who suddenly find themselves responsible for helping us remain gluten free too, simply by merit of eating meals with us.

At first my friends/ family were all about saying they'd make sure I'd have gluten free stuff when I ate with them...but after repeat gluten attacks, I think we all learned to just take the pressure off and let the gluten free one among us (me) handle it. Though they all have the best of intentions, well, that's not enough when it comes to gluten-ing.

I know it tooks me a good six months to adjust, so it will get better I promise! Just hang in there and good luck with your trip to take your son to school!


dana - developed celiac at age four but not diagnosed until age 20 - gluten free since summer 2006

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I feel a BIG canadian HUG comng your way!!!

:P

Hang in there. =)


Gluten Free for 3 years.

An Aunt came to me and told me she Celiac Disease. (Had not spoken to her in 8 years) She said I should be tested and I did, however I had never heard of it before then.

I suffered with severe depression since 14. Took two kinds of meds that didnt help me at alll. After Celiac, I take no meds at all and feel great.

I am a new woman and life has changed. :)

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