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Mr.GF

Biggest Obstacle In Coping With celiac disease

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Just want some advice/feed back on the biggest obstacle in coping with celiac disease? My guess is the eating/food. What about the food problem is the most prevelant? Taste,avalability,price?

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For me, it isn't really the food. Meat, fruits, vegetables, etc. are all still available. I enjoyed a simple chicken and rice meal even before going gluten-free. Granted, I miss bread--I was always the person who got overly excited by breadsticks, or the bread at Carino's (yum!), but it actually hasn't been that hard to go without. I have been spending a lot more at the grocery store, but feeling better makes the money not seem significant.

The hardest part is the social aspect. I feel guilty if I'm with people at a restaurant and I take an extra long time to order because I have to clarify and ask a million questions. I feel badly turning someone down if they offer me something containing gluten. I especially feel badly if I'm with a group and the decision on where to eat depends solely on where I'll be able to have options. I don't like being 'that person.'

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Just want some advice/feed back on the biggest obstacle in coping with celiac disease? My guess is the eating/food. What about the food problem is the most prevelant? Taste,avalability,price?

No, not eating food. There is tons of food that is OK. I also have no problem eating in restaurants. Even regular menus have good choices. Last night had clams zuppa (no bread) and grilled veal chop with baked potato and grilled asparagus. I stay away from anything with a sauce or bread topping.

I'd say my biggest is going to a work banquet or conference where there isn't much choice. My husband I went to a hospital dinner one time and the dinner was a pasta buffet. I had the salad and a drink and then he said we'll go out later. He ate a tiny bit and we went out late and had a great time. Another was at a conference, workshop for my job. They provided lunch and it was club sandwiches. I took off all of the bread and cut up the filling like a salad. Two other people watched me doing it and said. "What a great idea, we don't need all of these carbs." They all did it too.

People say to me "you are thin because you have celiac" I say no, I am thin because I exercise and eat healthy. There are PLENTY of fattening, high calorie gluten free foods.


Gluten free since 1990.

Diagnosed by duodenal biopsy.

You don't stop skiing because you get old. You get old because you stop skiing :-)

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Pot lucks and eating out. At home it's fine.

There are gluten free substitutes for everything. I post this all the time, but the best bread I've found for the best price is Gluten Free Pantry Basic White Bread and their French bread mix. Both are easy to prepare and seem the most "normal" without costing a fortune.

I don't eat a whole lot of gluten free substitutes. I do have Betty Crocker cookies or cake and a few other things, but I eat a lot of fresh foods, meats, etc.

I've found that when I'm packing food to be out somewhere it's easier on me to pack a bunch of food rather than create a "meal." I grab some ham, an apple, a banana, a bag of almonds, some carrot sticks, maybe some gluten free bake Kettle chips or some Glutino pretzels.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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It's not the food itself that is the problem, it's the lack of convenience. I can't eat free lunches provided by my grad program anymore. There is exactly one thing that I can eat safely from the diner across the street, so when we eat there with guest speakers I order the same thing over and over. I can't stop and pick up a pizza or Thai carryout for dinner on nights when I'm absolutely exhausted and don't want to cook. I can't eat at other people's houses without asking a bunch of questions or simply bringing my own food. My husband and I are really good cooks and my celiac disease has inspired us to be even more creative (with fun and often delicious results) but I miss not having to think and worry about everything that I eat that's been prepared by someone else.

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Im from Long Island and there are a few places that serve a gluten-free menu. I think outback has one too. My concern is the cross contamination. I personally don't have celiac or a GFI. My close friend does. My mother also works in a hospital and hears some patients complain about the lack of gluten-free choices in a hospital. They want muffins, bagels etc. They can only get bacon and eggs. My friends concern is convenience. Would be nice to pop a meal in the microwave (he is a bachelor) and be done with it. There are a few gluten-free fast meals but apparantly they are crud.

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I also say eating out at restaurants or social situations. Also, similarly, going on road trips or even day trips. I have to put so much effort into planning (and I usually end up bringing way too much food).


Monica

dx celiac disease- November 1, 2008

dairy/casein free (much to my chagrin) for good- September 1, 2010

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Just want some advice/feed back on the biggest obstacle in coping with celiac disease? My guess is the eating/food. What about the food problem is the most prevelant? Taste,avalability,price?

For me the biggest challenge is the social aspect of it. It's so hard, you go to parties/functions and you can't eat anything, always having to either bring your own food or going somewhere after that. This disease is very isolating and lonely. Food is a very social thing and just the fact you can't participate much is very difficult.


Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).

Extremely allergic to shellfish, Aspirin & Ibuprofen

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" Another was at a conference, workshop for my job. They provided lunch and it was club sandwiches. I took off all of the bread and cut up the filling like a salad. Two other people watched me doing it and said. "What a great idea, we don't need all of these carbs." They all did it too."

I have a question about this statement, if you take the filling out of a sandwhich and cut it up, won't that still contain gluten from cross contamination?

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" Another was at a conference, workshop for my job. They provided lunch and it was club sandwiches. I took off all of the bread and cut up the filling like a salad. Two other people watched me doing it and said. "What a great idea, we don't need all of these carbs." They all did it too."

I have a question about this statement, if you take the filling out of a sandwhich and cut it up, won't that still contain gluten from cross contamination?

Technically, yes. It never bothered me and I didn't use any parts that had obvious crumbs on them. ie: the part where the mayo might have picked up some crumbs. Sometimes you've just got to pick your best option. It worked out fine for me.


Gluten free since 1990.

Diagnosed by duodenal biopsy.

You don't stop skiing because you get old. You get old because you stop skiing :-)

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I agree that the social aspect is the hardest. It's embarrassing and annoying to be "different" and have to explain and question everything at a party or event. Also as the Mom and cook, I miss the convenience of just saying, "I don't feel like cooking tonight, let's order a pizza or whatever." But I am cooking more healthy and fresher, better tasting foods, so sometimes cooking is seeming to me like a fun and creative endeavor rather than this annoying burden that I've been doing for too many years.

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The social aspect for sure! Getting used to a gluten-free diet is manageable. However, having to constantly explain my situation is overwhelming (cuz I'm a newbie). People have always expected me to eat differently because I've been vegan for years, then vegetarian, now SCD, but it gets irritating that my healthy eating makes me the bizarre one in a group. Ummm, no twinkie eater, you are bizarre :P


Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010

Dairy Free 06/2010

Soy Free 05/2010

Legume Free 05/2010

Caffeine Free 05/2007

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The social aspect for sure! Getting used to a gluten-free diet is manageable. However, having to constantly explain my situation is overwhelming (cuz I'm a newbie). People have always expected me to eat differently because I've been vegan for years, then vegetarian, now SCD, but it gets irritating that my healthy eating makes me the bizarre one in a group. Ummm, no twinkie eater, you are bizarre :P

Actually, my husband and kids say that my going gluten free has introduced them to all kinds of great food that they might not have tried. Quinoa, buckwheat kasha, etc. Healthier too. My husband said that it was nice not to have to go to McDonalds or Burger King while traveling with the kids. He had an excuse, me. We got to go to real sit down restaurants and because of it my kids are not junk food junkies. They are 25 and 27 now and both boys cook and appreciate healthy food. Neither have celiac disease.


Gluten free since 1990.

Diagnosed by duodenal biopsy.

You don't stop skiing because you get old. You get old because you stop skiing :-)

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What about a good frozen pizza? Any of those around...just pop in the oven and wah lah! Or even something like a stouffers lasagna, just pop in the tray and you have a complete meal??

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Spontaneity. You can't just randomly go out with friends or drop by for lunch unless you carry around back-up food or are willing to be the one to just get tea. You have to plan on being stuck in the airport for an extra 6 hours. I'm finding that I have to limit on how much I can eat at other people's houses/restaurants because I have mild CC problems that show themselves over a certain limit. If I eat away from home three + times over one week, I'll probably be sick by the end of the week. One or twice is fine.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Spontaneity. You can't just randomly go out with friends or drop by for lunch unless you carry around back-up food or are willing to be the one to just get tea. You have to plan on being stuck in the airport for an extra 6 hours. I'm finding that I have to limit on how much I can eat at other people's houses/restaurants because I have mild CC problems that show themselves over a certain limit. If I eat away from home three + times over one week, I'll probably be sick by the end of the week. One or twice is fine.

This too. I had one weekend during which, between family obligations and grad program obligations, I had to eat in restaurants four times. I did my best to get safe meals but still ended up sick for a week. I always feel like I'm playing Russian roulette when I eat food that I (or my husband) haven't prepared so I try to spread out those occasions as much as possible.

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Actually, my husband and kids say that my going gluten free has introduced them to all kinds of great food that they might not have tried. Quinoa, buckwheat kasha, etc. Healthier too. My husband said that it was nice not to have to go to McDonalds or Burger King while traveling with the kids. He had an excuse, me. We got to go to real sit down restaurants and because of it my kids are not junk food junkies. They are 25 and 27 now and both boys cook and appreciate healthy food. Neither have celiac disease.

Hey TinaB. Oh, it's not my family that is causing the issues, it's outsiders. Like at social events, restaurants, etc... My family (hubby & 2 kids) are healthy as well and eat whatever I cook. They are just glad I cook meat now...ha!!! I just wish the outside world understood more about gluten intolerance. Wouldn't that be dreamy?!


Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010

Dairy Free 06/2010

Soy Free 05/2010

Legume Free 05/2010

Caffeine Free 05/2007

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I'm going to agree with everyone saying the social aspect. Twice now (in the 5 weeks I've suspected gluten) I've been invited to places that don't offer ANY gluten free options. It's hella frustrating, and makes me feel bad, especially because the host of the first one felt horrible for picking the pizza place. She didn't know my intolerance because I'd only suspected for a week at that point. It was the first day of my first gluten-free trial, and she felt horrible for picking the place, which made me feel horrible because I made her feel horrible. :( Definitely the social aspect.


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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" Another was at a conference, workshop for my job. They provided lunch and it was club sandwiches. I took off all of the bread and cut up the filling like a salad. Two other people watched me doing it and said. "What a great idea, we don't need all of these carbs." They all did it too."

I have a question about this statement, if you take the filling out of a sandwhich and cut it up, won't that still contain gluten from cross contamination?

I know the original poster said it worked out fine but unless it's a complete emergency and you have no other choice but to eat sand, I would not do this. Even if you don't react you're getting glutened.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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I agree with spontaneity as a big sacrifice. Goodbye to "I don't feel like cooking-I'll just pick up a pizza" Also, I used to reward myself for working hard and being frugal with the occasional dinner out. But now the idea that that reward could actually be a punishment, prevents me from rewarding myself in that way. And that was my favorite way of spoiling myself.

And the constant awareness; the constant vigilance; the dialogue in my head "if their chip goes into that dip-don't eat it! Watch out- those are bread crumbs!Can I eat there? Is it worth the risk?" Traveling in other countries-my absolute favorite thing in life, has now become a tightrope walk.

I sound whiny now, in light of the bigger picture of improved health. But your question did encourage the self-pity......

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Convenience, both in time and in money - definitely in related to the spontaneity side of things.

I'm very sensitive to the gluten, so even most 'gluten free' items have more gluten than I can tolerate. I've reacted to gluten-containing soap residue on dishes, best we can tell. It's really pathetic. :(

Add a couple food allergies on to that and it sometimes feels impossible. We have to bring food with us everywhere, and cook pretty much all food ourselves (3 of the 4 of us have gluten problems). I make our broths, crackers, cereals, condiments, everything. I can't even express how much I miss being able to eat food that someone ELSE made. I miss that, being able to feel tired and cater to that feeling with a pre-made meal.

My brother was diagnosed as well, a few months after me, and he's expressed the same frustration. He's not as sensitive, but he has a much tighter budget, so he cant afford the pre-made gluten free food. He has to make it all from scratch as well. Both of us were talking about it recently, actually, and while periodically we think fondly of the gluten foods we used to have, it hardly registers as an issue compared to the extra work in our lives needed to simply eat, now.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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My biggest obstacle nearly makes me cry thinking about it.

I live pretty much in the middle of nowhere, and it's fairly hard for me to get a hold of gluten-free foods. But the worst part is when someone says something like "Hey, let's go grab a pizza/burger/etc." And then I have to decline or even worse my family declines to go to "support me". Or when I'm at church and there is a pot-luck or something and I'd the one in the kitchen either making my own food, or sitting somewhere alone because I forgot that there was a pot-luck that day.

It sucks to feel so alone. And I hate that my food costs so much.

Guess those are my two biggest things.

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Lately, my biggest obstacle is the-gluten-that-came-from-I-know-not-where!

Then, I'm on this search for new things that could poison me - and attempting to temper the search (and not waste my energy by going to far in the direction of paranoia).

I love at home beauty treatments. I'm known for it in my family. I can also get lost in my thoughts and forget what I'm doing with my hands for a moment. This means that items applied externally can end up internal if I touch my lips for a moment in thought - or lick my fingers after having a little snack (brain food). When I started reading the labels of my beauty products (and contacting the companies), I found many of my favorite products will not work for me.

Getting lost in my thoughts is not a personality trait I have found a way to change, so I have to change my environment. It's been a sad beauty overhaul for me. I know that would be silly for some, but it was one of my favorite relaxing activities.

Once I get past this one, I'm sure it will be the social aspect again.

Signed,

A girl who really used to like Twinkies ;)

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I agree with spontaneity as a big sacrifice. Goodbye to "I don't feel like cooking-I'll just pick up a pizza" Also, I used to reward myself for working hard and being frugal with the occasional dinner out. But now the idea that that reward could actually be a punishment, prevents me from rewarding myself in that way. And that was my favorite way of spoiling myself.

And the constant awareness; the constant vigilance; the dialogue in my head "if their chip goes into that dip-don't eat it! Watch out- those are bread crumbs!Can I eat there? Is it worth the risk?" Traveling in other countries-my absolute favorite thing in life, has now become a tightrope walk.

I sound whiny now, in light of the bigger picture of improved health. But your question did encourage the self-pity......

Ditto.


 

 

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I'll second, third, fourth, and fifth the social aspect. Pizza parties, school/work outings, all those things that require extra planning. The food part itself is pretty easy--and the reward is feeling better.

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