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Biggest Obstacle In Coping With celiac disease

Mr.GF

By Mr.GF
in Coping with Celiac Disease

Recommended Posts

digmom1014 Enthusiast
digmom1014
Posted

My biggest complaint is when a restaurant works one time and gets you sick the next. Same order, same restaurant, etc.

This just happened to me this afternoon at P.F. Chang's. Maybe it was a fluke or a careless food handler, but you really rely on having the same "no problem" after effects.

I will not take P.F. Changs off my list, and no I didn't call them since it has happened before, but thank goodness it was just my husband and I at lunch. Most people like P.F. Changs or many of the other mainstream places that serve gluten-free food but, I really hate picking the restaurant for everyone and then getting sick anyway.

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TrillumHunter Enthusiast
TrillumHunter
Posted

It's the lack of quick food. If I am running late, I still have to cook. I find my self cooking and eating dinner with my family at a late hour. This is a pretty minor.

Far worse for me has been the anemias caused by being undiagnosed for far too long. I hate getting infusions and injections and having regular dates with the phlebotomist. I don't like being stuck and I worry about my long-term health. This is what keeps me from eating doughnuts....

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

In addition to the social aspect everyone has mentioned, the need to always plan ahead to have food you can eat at all times is really tiring. I plan my days around food, there is no just going out someplace and picking something up from where ever when you get hungry. This past week I relearned it the hard way. We went to visit some friends for what should have been no more than an hour away from home. We left the house at 10:00 AM and at that time I did question my husband, "Well what will we eat if we don't get back here in time for lunch, should I take something with me?" To which he said I was being silly and borderline obsessive, that we would be back before noon and we could make some lunch then. So I left without anything to eat in my purse. Big mistake! On the way to our friends' place we had car problems. Long story short, what should have been a quick visit turned into a big ordeal and we did not get back home until 3 PM! There was nothing I could eat at the friends' house and nothing safe I could eat between there and home (although I thought very seriously about stopping at a farm stand selling sweet corn and eat raw corn on the cob, I did not). By the time we got back I had not eaten for 7 hours and nearly passed out. Fortunately my husband ate his words, apologized profusely to me and made me some food. I know he will never again say I'm being obsessive when I ask "what will I eat?" But it is such a depressing thing to have to always be vigilant, and always plan to have food on hand.

K8ling Enthusiast
K8ling
Posted

OTHER PEOPLE and their skepticism/stupidity/difficulty. Also assuming that CC is no biggie.

Another issue is playdates. And not being able to eat ChickFilA however I am slowly coming to terms with this :P

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

OTHER PEOPLE and their skepticism/stupidity/difficulty. Also assuming that CC is no biggie.

Another issue is playdates. And not being able to eat ChickFilA however I am slowly coming to terms with this :P

I miss Chick-fil-a too. I heard their waffle fries were safe, but when I tried them I got a gluten reaction. :(

polarbearscooby Explorer
polarbearscooby
Posted

OTHER PEOPLE and their skepticism/stupidity/difficulty. Also assuming that CC is no biggie.

Another issue is playdates. And not being able to eat ChickFilA however I am slowly coming to terms with this :P

I miss Chick-fil-a too. I heard their waffle fries were safe, but when I tried them I got a gluten reaction. :(

I still eat Chick-Fil-a...

I get grilled strips with fries but NO ketchup! The ketchup is what always got me...if I leave it off I'm fine about 75% of the time...

looking4help Apprentice
looking4help
Posted

I have to agree. OTHER PEOPLE! I could just yank them my way at times and say would you like to come into MY world for a bit? HUH?

I have an upcoming laproscopy and when a family member found out she said well I thought that the gluten free diet had fixed it all?

Now, in all fairness I realize she is uneducated in the subject but I am really tired of explaining myself. It really felt like she was saying ohhhhh "another" issue??? I just politely explained that it took years to get this sick and it will probably take years to discover all the damage and get better.

ARGH!

***I also miss Chic Fil A !! It was my favorite fast food place. Plus I am a cow lover so the theme was great for me!

OTHER PEOPLE and their skepticism/stupidity/difficulty. Also assuming that CC is no biggie.

Another issue is playdates. And not being able to eat ChickFilA however I am slowly coming to terms with this :P

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cmom Contributor
cmom
Posted

I have to agree. OTHER PEOPLE! I could just yank them my way at times and say would you like to come into MY world for a bit? HUH?

I have an upcoming laproscopy and when a family member found out she said well I thought that the gluten free diet had fixed it all?

Now, in all fairness I realize she is uneducated in the subject but I am really tired of explaining myself. It really felt like she was saying ohhhhh "another" issue??? I just politely explained that it took years to get this sick and it will probably take years to discover all the damage and get better.

ARGH!

***I also miss Chic Fil A !! It was my favorite fast food place. Plus I am a cow lover so the theme was great for me!

You can still have Chic Fil A...they have gluten-free choices

Almendra Apprentice
Almendra
Posted

I also completely miss Chic-Fil-A. As with any fast food restaurant, I have my doubts as to their training in gluten free. Even when I've been standing in a restaurant watching after giving specific instructions, I've seen the employees (kids of about 17 or 18) not entirely master gluten-free safety. Most employees of any fast food establishment are very young, and, I'm sorry, a little too irresponsible for me to trust them with my health.

And, sadly, I still have not become sufficiently assertive to make them do it again. I still do not have sufficient tolerance for that kind of frustration or desire for fast food to put up with that.

I remember stories of the crazy things my friends would tell me they did at their fast food jobs. Not predictable. Not professional.

I can't trust them with my safety (unless we know each other personally), at least until we have some kind of certified Celiac-Safety training that companies can advertise that they mandate for employees - I'm out.

K8ling Enthusiast
K8ling
Posted

Genius. And will be mandatory when I open my totally gluten free/ Allergy friendly restaurant after my husband retires. They'll have mandatory gluten-free/Celiac training, as well as education in the BIG 8.

Too bad i have to wait 20 years to do it lol

Monklady123 Collaborator
Monklady123
Posted

I'll second (third, fourth, hundredth?) the social aspect of celiac. For me, being in the church "business", I have an unending string of potlucks, ladies' teas, women's groups, denominational meetings, classes.... you name it, and they all come with food. Right now at my church we're doing a summer preaching/teaching series on the meaning of the Lord's Supper (communion). Well, naturally, since the series is about eating, each weekly class will be preceded by a light potluck. We're keeping it simple -- bread, cheese, other sandwich fillings, fruit -- so that will be okay. But you know that one of the lovely old ladies will bring her specialty desert and I won't be able to eat it. :(

It's a small church and I've started telling people about the gluten thing -- using the word "allergy" to begin since people understand that word very well (we have a boy in the church who has one of those very severe peanut allergies). So I know that people have been, and will be, understanding. It's just that I can't eat all those yummy things.

The women's groups are more difficult because that seems always to revolve around baked goods. I've been browsing around the internet -- found a Facebook group that has tons of yummy-sounding recipes -- so I plan to bake something to take to the next one. Only problem with that is the ladies don't expect "pastor" to bring anything. That's a whole other issue. rofl... :rolleyes:

And then the other one is what many people already mentioned -- no more saying spontaneously "oh let's run out for pizza".

Well....I feel SO MUCH BETTER that I'm not missing all that too much. (and since I've discovered Udi's bread things are looking up. lol...)

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I still eat Chick-Fil-a...

I get grilled strips with fries but NO ketchup! The ketchup is what always got me...if I leave it off I'm fine about 75% of the time...

How does the ketchup get you? Chick-fil-a's ketchup has gluten in it? I always put ketchup on my fries, but if that's the case I might try the waffles fries again and bring my own ketchup. I don't like the that ketchup has HFCS anyway.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'll second (third, fourth, hundredth?) the social aspect of celiac. For me, being in the church "business", I have an unending string of potlucks, ladies' teas, women's groups, denominational meetings, classes.... you name it, and they all come with food. Right now at my church we're doing a summer preaching/teaching series on the meaning of the Lord's Supper (communion). Well, naturally, since the series is about eating, each weekly class will be preceded by a light potluck. We're keeping it simple -- bread, cheese, other sandwich fillings, fruit -- so that will be okay. But you know that one of the lovely old ladies will bring her specialty desert and I won't be able to eat it. :(

It's a small church and I've started telling people about the gluten thing -- using the word "allergy" to begin since people understand that word very well (we have a boy in the church who has one of those very severe peanut allergies). So I know that people have been, and will be, understanding. It's just that I can't eat all those yummy things.

The women's groups are more difficult because that seems always to revolve around baked goods. I've been browsing around the internet -- found a Facebook group that has tons of yummy-sounding recipes -- so I plan to bake something to take to the next one. Only problem with that is the ladies don't expect "pastor" to bring anything. That's a whole other issue. rofl... :rolleyes:

And then the other one is what many people already mentioned -- no more saying spontaneously "oh let's run out for pizza".

Well....I feel SO MUCH BETTER that I'm not missing all that too much. (and since I've discovered Udi's bread things are looking up. lol...)

I have struggled with church things as well. Though I am not a pastor, but people at my church always want to bring you food when you are sick. Most of it food I can't eat (baked goods or chicken noodle soup or pasta dishes). We were up front and told people it was gluten making my ill (and explained no wheat, rye, barley, etc) but the little old ladies don't understand. Some of them think white flour doesn't have wheat in it. Then there was the breakfast time bible study I attended, every week I brought my own little bag of carrot sticks because there was nothing I could eat there. I had pretty much the same conversation with the same people each week: "my, you are eating healthy." Me: "Well I can't have any of the food" "But I brought a sausage and egg casserole just for you" Me: "Really what's in it?" "Well, pork sausage and eggs and bisquick..." It was pointless to point out that I was deathly allergic to pork and Bisquick has gluten (this was long before the gluten-free Bisqiuck came out so I know it wasn't gluten-free). I had virtually the same conversation ever week with a different food being pushed at me. At the end of the study they made a cookbook with all of the recipes in it. I picked one up, looked at every single recipe and not one was gluten free. This was when I was very new (only a few months into eating gluten free) and I didn't know how to make baked goods, but when the next bible study starts up I am going to start bringing things I can have to share with everyone.

Monklady123 Collaborator
Monklady123
Posted

I have struggled with church things as well. Though I am not a pastor, but people at my church always want to bring you food when you are sick. Most of it food I can't eat (baked goods or chicken noodle soup or pasta dishes). We were up front and told people it was gluten making my ill (and explained no wheat, rye, barley, etc) but the little old ladies don't understand. Some of them think white flour doesn't have wheat in it. Then there was the breakfast time bible study I attended, every week I brought my own little bag of carrot sticks because there was nothing I could eat there. I had pretty much the same conversation with the same people each week: "my, you are eating healthy." Me: "Well I can't have any of the food" "But I brought a sausage and egg casserole just for you" Me: "Really what's in it?" "Well, pork sausage and eggs and bisquick..." It was pointless to point out that I was deathly allergic to pork and Bisquick has gluten (this was long before the gluten-free Bisqiuck came out so I know it wasn't gluten-free). I had virtually the same conversation ever week with a different food being pushed at me. At the end of the study they made a cookbook with all of the recipes in it. I picked one up, looked at every single recipe and not one was gluten free. This was when I was very new (only a few months into eating gluten free) and I didn't know how to make baked goods, but when the next bible study starts up I am going to start bringing things I can have to share with everyone.

Yep, this is exactly what I'm going to start doing. The ladies will have to get over their old-fashioned ideas about "the pastor". lol... Either in the baking forum here, or a link that was posted there, I found a recipe for a wonderful-sounding chocolate torte/pie kind of thing. I'm going to make that for the next time we have a potluck. I'll just have to make sure I get a piece along with my dinner, because I'm expecting it to go fast (it sounded yummy).

And yes, I had the exact same conversation with several people about white bread. One said "oh it's not wheat, it's white bread." Um.... -- yes, I understand that they're confusing "whole wheat" with "wheat". But I'm wondering what they think it's made of?

Well, I'm looking at it as a chance to educate people. Now we just have to figure out the whole communion thing, for Sundays when I'm not leading worship. Especially this summer with the darn preaching/study series. lol....

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Yep, this is exactly what I'm going to start doing. The ladies will have to get over their old-fashioned ideas about "the pastor". lol... Either in the baking forum here, or a link that was posted there, I found a recipe for a wonderful-sounding chocolate torte/pie kind of thing. I'm going to make that for the next time we have a potluck. I'll just have to make sure I get a piece along with my dinner, because I'm expecting it to go fast (it sounded yummy).

And yes, I had the exact same conversation with several people about white bread. One said "oh it's not wheat, it's white bread." Um.... -- yes, I understand that they're confusing "whole wheat" with "wheat". But I'm wondering what they think it's made of?

Well, I'm looking at it as a chance to educate people. Now we just have to figure out the whole communion thing, for Sundays when I'm not leading worship. Especially this summer with the darn preaching/study series. lol....

I don't know what religion you are talking about, but can you make gluten free bread (or wafers) for you communion bread for the whole church? I have even read here that there are places online you can order it (but I don't know where). So far I have been just avoiding the bread, because I haven't found a good substitute, but I would think it would be easier if you are pastor. Most people probably won't notice the difference and you can participate/lead without concern.

Monklady123 Collaborator
Monklady123
Posted

I don't know what religion you are talking about, but can you make gluten free bread (or wafers) for you communion bread for the whole church? I have even read here that there are places online you can order it (but I don't know where). So far I have been just avoiding the bread, because I haven't found a good substitute, but I would think it would be easier if you are pastor. Most people probably won't notice the difference and you can participate/lead without concern.

I'm Presbyterian. And I'm not the head pastor, just the assistant. Although the pastor is VERY supportive and will do whatever we need to do. Since I've just been diagnosed not too long ago I haven't really figured it all out yet. Eventually I might bake some bread. But I have to confess that I hate to cook, and baking seems even harder, and I've never done much of either! So I have some learning to do. :) Meanwhile, the pastor bought some gluten-free wafers and said we could use those. But the thing is... it bothers me to be the only one who takes a wafer when everyone else is breaking off a piece of bread from the common loaf. :( So obviously baking the loaf myself will solve that. When I learn how. :rolleyes: For this next Sunday we're passing trays in the pews and this will be much easier. The trays have the bread already cut up, so I'm going to put some Udi's in a small dish and we'll have that right on the tray. That will work out fine. I wish I could buy Udi's unsliced, which would solve the other problem. Guess I'll just have to bite the bullet and learn to bake bread. {gasp!} lol....

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