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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Everyone Eats While I Watch: Your Honesty Needed, Please
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38 posts in this topic

I need everyone to be very honest with me. I need to know if the way I am feeling right now is selfish of me or not . . .

My husband and I are going on vacation to be with our daughter. Today, hubby told me that he and our daughter might want to go to a very special restaurant where I can eat nothing safely.

I told him that it would be wonderful if they go -- that they should go and enjoy themselves! I asked for his understanding if I did not go with, and he said I was being very selfish.

I responded that I disagreed. I felt I was being empathetic. I explained that, if he couldn't eat gluten, it would kill me to go to a restaurant and eat all kinds of wonderful, highly-rated, much-craved food while he sat and watched and ate nothing . . . even if he were being a great sport about the whole thing. I explained that I am asking to sit out because it would allow them to have a good time without having to think about my sitting there . . . which I really understand. It is not a problem!

He disagrees. He feels I should go and sit there and be the higher person, and that I am being extremely selfish if I do not do it.

Perhaps he is right.

Augh . . . thank goodness for this group! I am really on the fence here. I am honestly am not sure how I should process or react to this.

I am also feeling a bit hurt by his reaction . . . I want him to understand how difficult it would be for me to go and just watch them eat while I drink water . . . but perhaps I am being unreasonable?

We belong to a non-profit organization where I have to bring my own food to the meetings. Why shouldn't I also be able to be the bigger person when it comes to my family . . . and either just drink water and enjoy their company or bring my own food and shut-up about the whole thing?

My husband is a very kind and caring person, as is my daughter.

Your thoughts?

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Don't go. It will be a wonderful Father-Daughter thing, and it would ultimately be spoiled by them realizing the full impact of what they had done to you. There's no 'bigger person' involved here, it's you appreciating that your husband wants to do something special for his daughter.

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I don't think you are being selfish just the opposite. This is an opportunity for him and your daughter to have a nice outing the two of them. Maybe after that you and her can do something special. I wouldn't want to sit there and not be able to safely eat anything either. Sure you could bring something to eat, but if you really don't want to go I don't see what the problem is.

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I think there's selfishness going on... but it's not yours! Why would your husband choose a restaurant knowing that you'd be able to eat nothing and then call you selfish for not wanting to go and drink only water? I think you're telling him to go w/o guilt and have a great time w/ your daughter is very selfless rather than selfish!!

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I can't believe this place can't fix a gluten free meal. If you haven't called the place you need to give them a call. I just had dinner at an Italian place whose speciality is of course pasta. My meal was gluten free.

I think one could go both ways on this. It would be nice as a father-daughter night out. I could go, not eat and enjoy myself but not everyone could do this. I'd be taking photos the whole time to document the dinner. If both of them want you to go I suggest you go or it will be remembered by your daughter as the night Mom refused to go to dinner with me.

I do vote your husband as being rather selfish on this matter.

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Do you want the honest truth? I would be extremely hurt if my husband and daughter chose a special restaurant knowing full well that I couldn't eat there safely. If they really want to eat at that particular restaurant, I agree with the others that they should go alone and spend time together. It would be hurtful and degrading to require you to sit there and "suck it up" while they got to thoroughly enjoy themselves.

You say very positive things about your husband, but I think he needs to empathize more with your condition. I honestly don't think he'd feel comfortable if the situation were reversed. Personally, I know my husband and daughter would NEVER choose a restaurant where all three of us couldn't eat, but that doesn't mean that they don't enjoy going to restaurants without me so that they can enjoy pizza or Japanese food. In fact, they're so worried about my feelings being hurt, they usually don't even tell me when they've gone out together to enjoy these types of meals. They have pizza delivered only on evenings when I'm working late so that I don't have to smell it (it was my favorite food before being diagnosed, and the gluten-free pizza shops are located too far away for delivery).

In this instance, I believe your husband is being selfish....but you may not wish to mention this particular opinion to him because this might cause an even bigger tiff. I believe, though, that he needs to be a LOT more understanding of your illness. It IS a disease that not only affects us physically--it affects us socially and emotionally. Perhaps an experiment is in order! Of course, he'll have to be willing to play along....but if you were to meet up with him at his all-time favorite restaurant when he was especially hungry and then explained to him that the rules would be that you would eat a meal in front of him without his ordering anything and without your sharing even a morsel of what you were eating--how do you think he'd feel? You and I know exactly how he'd feel, because we've had to do this very same thing time and time again. I guess you could call this tough love, but he might "get" it.

Good luck!

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I agree with the general consensus so far as well. Just recently I have decided to quit going places where I can't eat and watching people eat just to be social. It sucks. I don't think you are being selfish at all, and I am sorry that your family chose a restaurant you can't eat at, and still expect you to go! That seems a bit unreasonable really. If they really want you to go, then it needs to be someplace that you can eat. If they really like the restaurant and really want to go (which I can also understand), then they just need to respect your wishes to bow out this time.

But on the other hand, are you SURE you can't eat there? Have you called and talked to the chef or the manager? There may still be hope. Maybe you could get a salad with oil and vinegar or something...?

I wish you the best in sorting this out. I'd be interested to know how this story ends!

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Don't go. You'll end up depressed and resentful, they'll feel bad and it will ruin an otherwise special night. I definitely agree with the "Father Daughter" thing. Hopefully they'll jump on board!! Good luck :)

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I need everyone to be very honest with me. I need to know if the way I am feeling right now is selfish of me or not . . .

My husband and I are going on vacation to be with our daughter. Today, hubby told me that he and our daughter might want to go to a very special restaurant where I can eat nothing safely.

I told him that it would be wonderful if they go -- that they should go and enjoy themselves! I asked for his understanding if I did not go with, and he said I was being very selfish.

I responded that I disagreed. I felt I was being empathetic. I explained that, if he couldn't eat gluten, it would kill me to go to a restaurant and eat all kinds of wonderful, highly-rated, much-craved food while he sat and watched and ate nothing . . . even if he were being a great sport about the whole thing. I explained that I am asking to sit out because it would allow them to have a good time without having to think about my sitting there . . . which I really understand. It is not a problem!

He disagrees. He feels I should go and sit there and be the higher person, and that I am being extremely selfish if I do not do it.

Perhaps he is right.

Augh . . . thank goodness for this group! I am really on the fence here. I am honestly am not sure how I should process or react to this.

I am also feeling a bit hurt by his reaction . . . I want him to understand how difficult it would be for me to go and just watch them eat while I drink water . . . but perhaps I am being unreasonable?

We belong to a non-profit organization where I have to bring my own food to the meetings. Why shouldn't I also be able to be the bigger person when it comes to my family . . . and either just drink water and enjoy their company or bring my own food and shut-up about the whole thing?

My husband is a very kind and caring person, as is my daughter.

Your thoughts?

It sounds like your family wants to spend time with you.

Don't bow out because you think you'd be doing them a favor. If hubby is upset about your intended absence, then why would you think you're doing the right thing?

Bring some food in your purse and order an empty plate.

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Oh! It makes me so sad to think of all the extra difficulties that we have to go through with this disease. It not only affects our physical life and social life, but it also affects our emotional life and our relationships.

Lynayah,I definitely don't think you are being selfish and if your husband could really understand where you are coming from I don't think he would ask you to go somewhere that you can't eat with your family. I just don't think that people who don't experience this exact thing can completely understand. It is selfish in a way, but I don't think that he can understand that completely. Of course our loved ones can come very close to understanding, but I truly believe that unless you have walked in someones shoes you can't completely understand where they are coming from.

I have been hurt by my friends and family and their apparent lack of understanding, but one day I realized that no one that doesn't have this disease, or something just like it, will ever be able to completely understand, and may at times inadvertently hurt or disappoint us. But, although I wish I had someone to talk with that would truly get where I'm coming from (that's what you all are there for - right? ;) ), I'm thankful that the ones I care for don't have to go through this - it's really hard and I don't wish it on anyone. I am sure you have already been to this point, but I thought I would just share it anyway.

All that to say, I don't think that you are being selfish at all and I don't think that your husband is meaning to be either - I think that someday he will realize, one way or another, that asking you to do that is not just a decision of being mature, but it is actually a very emotionally hard thing to do. It is something that in one way or another we are bombarded with everyday - even when it gets easier - it's a life change that doesn't mesh with what most people live.

I hope you figure out what will work for you guys. :)

~Sarah

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I'm so sorry about this situation. It is like your husband and your daughter are on one side of the valley, you on the other, and there is this wide river that divides you. I agree that it would be a wonderful father/daughter opportunity (I never had any one-on-one time with either of my parents), and it would be painful for you to have to sit there watching them eat a wonderful meal and enjoying themselves. Do not try and swim the river - sunbathe on the other bank and meet up with them later.

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I would call the restaurant and ask to speak with the chef, they may need to call you back. They should be able to feed you something, a plain steak and baked potato or a salad and some steamed unseasoned veggies etc. If not then make a few calls to the better restaurants in the area and see if another might accomodate you.

My DD is getting married in the fall and when we discussed the reception dinner she just told me to bring my own food as the restaurant was doing something that would not accomodate me. Indeed their menus posted on line sure wouldn't. However I took it on myself to contact the person in charge at the restaurant. It turns out they do have the capacity to do gluten free food and I will be having plain turkey breast and steamed veggies. If I hadn't taken it on myself to contact I would be sitting and watching everyone else eat. Your family wants to spend time with you but also wants you to be safe and there should be a way to do so.

The alternative of bringing a little something in your purse, salad dressing for the salad or a salad from home etc might be something to do also but I think a couple phone calls might bring sucess with a nice restaurant.

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Tough one - I either wouldn't go or I would pack my own food & go...and, yes, eat my own food at the restaurant and have a glass of wine or something (I have done this lots before).

I thought I could do this last Christmas - my brother took DH, myself, and my kids out to a pizza place. It offered nothing but pizza. I was choked that he would do that - we were on holiday and there were lots of restaurants we could go to but he had to take us to this one because it was "neat". So I bucked up, brought my lunch kit and we went. Basically, I just go pissed off. Everyone had pizza (smelled real good) and ice cream and I sat there with my wine and didn't even touch my food.

I won't do that again - told hubby that too. He said it was mostly for the kids (he doesn't like to eat out much, and no it wasn't a kids restaurant). I said I didn't care - I wouldn't take a vegetarian to a bbq steak house that didn't have any vegetarian options, so I won't go to a place that doesn't have any gluten-free ones either (potentially, even if it's just a salad).

Maybe suggest your DH go with your daughter, spend some time together. If he says you're being selfish, look him in the eye and say really ? I am ?

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No you are not being selfish. Either you look after yourself or you don't

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I think you are doing a fantastic job of honoring your needs. And, realistically, I understand how hard it can be for others to understand our needs. It wasn't all that long ago that I had no idea about most of the stuff that I now understand about gluten, gluten intolerance, celiac and cross contamination! I think about the craziest, most mundane, yet incredibly critical details now ALL the time. And I have definitely learned from past mistakes! :rolleyes:

I have tried similar scenarios in several different ways, but most importantly I tried to do what *I* wanted to do. I have gone to social functions and eaten nothing. I had my own food in the car, and I ate both before and after the function. My lesson learned there was NOT to talk with the big gluten eaters closely - one of them got my when she was talking closely to me while eating chex mix & pretzels. Not everyone is super sensitive to airborne exposure, but *I* am - so now I try to respect and plan for that better.

I have contacted restaurants before hand to decide if there is any way that they can feed me something safely. That has always worked out well. Sometimes, working out well is having a complete understanding that there truly is *nothing* that they can safely prepare for me. But if it is a "nice" restaurant, I would expect that the kitchen has a true appreciation for feeding people. I have been pleasantly surprised by some of my experiences and interactions with kitchen staff and managers. A GOOD kitchen staff can pretty easily wrap their head around cross contamination and understand if they can safely feed you. Being able to identify and explain your needs for being fed safely is very helpful. I have helped kitchen staff in the past to figure out *how* to safely feed me.

And, whatever you decide you *want* to do, I hope that you will first and foremost enjoy yourself! I feel that you are not in any way being selfish to decline an invitation that may ultimately exclude you and leave you feeling uncomfortable.

So, how are you handling your food needs while on vacation? I typically make myself a really nice meal before these occasions where I want to socialize with others that will be eating. I have to laugh remembering one of the events that I went to and didn't eat at the party full of eating people, as there was one gentleman that just did not understand *why* I wasn't eating anything. But out of a crowd of 100 people, only one person seemed to be bothered by my not eating . . . and it wasn't me! :lol:

Good luck figuring this out - there really is not anything easy about learning to navigate the many, many details of living gluten free!

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Wow. This is a tough situation, but I wonder if perhaps your husband might be a bit frustrated? Seems odd to me that a good man who's a good husband and father would prepare you ALL this time in advance that, oh by the way, me and the darling daughter will be eating at this amazing restaurant for a super special time, but they can't accommodate you and we want you to go along and eat nothing. That to me sounds like a man who's frustrated that his wife can't join them, and might be passive aggressively lashing out in his frustration. And I'm not blaming him one iota. This whole thing stinks! :)

Let us know what you decide. I do agree that contacting the restaurant before you make your decision is worthwhile. If they can NOT accommodate you, I leave you with this thought. How would you like your daughter to view this situation? Would you want her to sit there, simply to please others and be miserable, when this is certainly not that important of an event (it's a meal, for pity's sake! We have several a day!) or would you want her to take care of herself and her emotional health first, and stand up for herself?

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This has happened to me many times. Eat before you go and order a lovely salad. You would be very surprised at what a rest. can do for you. Isn't the point of going is to be with your loved ones? Let them enjoy the food and you can enjoy there company.

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It strikes me odd that he would emphasize that this place can't accommodate you. If it's a fine dining kind of place they can surely accommodate you.

I'd like to know how he knows they can't accommodate you. Did he call?

If your presence is so important he would have picked a place that works for all of you.

The fact that he wants you to sit there while they eat is creepy and come across as a punishment. I think he does not want you to be accommodated. He wants you to sit there and be denied. Cripes.

You are not being selfish, he is.

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i have alot of thoughts about this post:

1. how does your hubby KNOW this place can't accomodate your needs? did he call them? if not, call the restaurant and ask them. is it where you are all going on vacation or is it in your town? i'm a bit confused on that point. in any case, i'd call the restaurant and speak to the manager.

2. i'm pretty certain there is something else going on here. you say your husband is normally very supportive so maybe this isn't about the food? has there been tension between you two lately, or some strain that's been put on your marriage? in relationships we often push down what's really bothering us and make a big deal out of something else to deflect what's really bothering us.

3. i have never been to a restaurant (even pizza places) where i sat and ate nothing. at the very least you can get a salad and take your dressing with you, or get oil and lemon. you can enjoy a glass of wine and chat. or you can get dessert - lots of places have gluten-free dessert -poached pears, ice cream, etc. just ask a few questions and see.

4. to all the celiacs who constantly complain about how they have to watch everyone else eat and they can't eat anything and everyone is so mean, and their bosses offer them doughnuts and people don't ever bring gluten-free food to potlucks, and gluten is the devil, and everyone is celiac they just don't know it yet, etc. come on now: you just want to eat the cake, and the bread and the pizza, and you are taking that out on other people. let's be honest. if everyone were celiac there would be no wheat and no temptation, right? i feel you, believe me. but grow up aleady. i know diabetics who have to be so careful with insulin and diet (literally life and death mistakes - diabetic coma, anyone?) and they go out to eat, take precautions and don't sit and moan about how they can't eat this or that.

it is not everyone else's job to look out for us. we have to look out for us. but we can do it without being resentful and obnoxious. if you don't make your diet a huge problem (ie, complaining about everything, sulking etc)other people won;t see it as a problem either. nobody wants to have a party and then have the celiac show up and complain about how little there is to eat and how wheat is poison. i have read posts like this on this forum and i have to say i am shocked at the infantile rantings. simply bring a dish, thank your hostess for her hard work and have a good time.

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I need everyone to be very honest with me. I need to know if the way I am feeling right now is selfish of me or not . . .

My husband and I are going on vacation to be with our daughter. Today, hubby told me that he and our daughter might want to go to a very special restaurant where I can eat nothing safely.

I told him that it would be wonderful if they go -- that they should go and enjoy themselves! I asked for his understanding if I did not go with, and he said I was being very selfish.

I responded that I disagreed. I felt I was being empathetic. I explained that, if he couldn't eat gluten, it would kill me to go to a restaurant and eat all kinds of wonderful, highly-rated, much-craved food while he sat and watched and ate nothing . . . even if he were being a great sport about the whole thing. I explained that I am asking to sit out because it would allow them to have a good time without having to think about my sitting there . . . which I really understand. It is not a problem!

He disagrees. He feels I should go and sit there and be the higher person, and that I am being extremely selfish if I do not do it.

Perhaps he is right.

Augh . . . thank goodness for this group! I am really on the fence here. I am honestly am not sure how I should process or react to this.

I am also feeling a bit hurt by his reaction . . . I want him to understand how difficult it would be for me to go and just watch them eat while I drink water . . . but perhaps I am being unreasonable?

We belong to a non-profit organization where I have to bring my own food to the meetings. Why shouldn't I also be able to be the bigger person when it comes to my family . . . and either just drink water and enjoy their company or bring my own food and shut-up about the whole thing?

My husband is a very kind and caring person, as is my daughter.

Your thoughts?

You are definitely not being selfish, and I would have the same reaction. On the other hand, you obviously have a wonderful husband who truly enjoys your company and wants you to be there. Perhaps you guys could get you something beforehand and then you could enjoy tea or something.

Again, I totally agree with you, but I always play devil's advocate. From his end, he just wants your company and won't be able to enjoy the experience as much without you being there. There are worse things men can do :)

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What do you mean by "special"? Is this somewhere with family significance, where you spent special occasions in the past? If so, I can see where there is some conflict and confusion.

If by "special" you mean expensive or exclusive as others have said it's unusual for a well-trained chef to be unable to make a gluten-free meal, even if it's as simple as salad, plain meat, and a baked potato. I've gotten some pretty spectacular gluten-free dishes at places where chefs really know their stuff, because they have a kitchen full of fresh, naturally gluten-free foods to work with.

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4. to all the celiacs who constantly complain about how they have to watch everyone else eat and they can't eat anything and everyone is so mean, and their bosses offer them doughnuts and people don't ever bring gluten-free food to potlucks, and gluten is the devil, and everyone is celiac they just don't know it yet, etc. come on now: you just want to eat the cake, and the bread and the pizza, and you are taking that out on other people. let's be honest. if everyone were celiac there would be no wheat and no temptation, right? i feel you, believe me. but grow up aleady. i know diabetics who have to be so careful with insulin and diet (literally life and death mistakes - diabetic coma, anyone?) and they go out to eat, take precautions and don't sit and moan about how they can't eat this or that.

it is not everyone else's job to look out for us. we have to look out for us. but we can do it without being resentful and obnoxious. if you don't make your diet a huge problem (ie, complaining about everything, sulking etc)other people won;t see it as a problem either. nobody wants to have a party and then have the celiac show up and complain about how little there is to eat and how wheat is poison. i have read posts like this on this forum and i have to say i am shocked at the infantile rantings. simply bring a dish, thank your hostess for her hard work and have a good time.

I find this rather harsh. This gluten-free lifestyle can be frustrating and difficult especially in the beginning. This is the one place many of us have to vent out frustrations safely. And sometimes we need to do so. Not everyone who vents their frustrations complains about everything, sulks, complain to hostesses, makes our family miserable or think that everyone on the planet is an undiagnosed celiac. There are also some of us who have extremely severe glutening symptoms and will suffer for weeks. The comparison of a diabetic needing to eat but doing so safely is not a fair comparison. Most diabetics are clear on what they can eat and don't need to fear that someone has 'dusted' their food with sugar. Sometimes we need to be able to vent to those that do understand but that doesn't mean we spend all our time making those around us miserable.

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Sometimes we need to be able to vent to those that do understand but that doesn't mean we spend all our time making those around us miserable.

Yes, Yes, YES! I look to support groups to help me work through the issues *before* I am in a situation and sometimes to help me develop my Lessons Learned! :rolleyes:

And when I first went gluten free I was just so grateful that *I* didn't have to figure out that cross contamination thing. Well, life has a funny way of teaching me, I guess!! But I have been blessed, and I am forever grateful for my daughter who has helped me navigate this as well as we have.

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No you are not being selfish. Either you look after yourself or you don't

this

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ravenwoodglass -

my point is that some -SOME- celiacs i have met in RL or have met through chatboards let celiac disease control their lives, to the point where they think everyone is against them or they have no control over what happens to them. that is a sad and lonely place to be.

in the beginning, yes, it IS overwhelming and scary, and i remember being really frustrated and freaked out, lost about 20 pounds (that i didn't need to lose) and cried...alot. but after a while you take a breath, see a nutritionist, read some books, and figure it out through trial and error. for example, i endlessly tried recreating bread (my fave food) but it just reminded me of how much i miss wheat bread. and that made me depressed and angry and snappy, and when i saw people eating warm buttered bread in restaurants i wanted to scream. eventually i saw the corellation and stopped trying to recreate a french loaf, and put my time into other things, and i felt much better. when i see/hear veteran celiacs complain about how mean/thoughtless their boss is by offering them a doughnut, for example, which i have read at least twice on this board, i think maybe it's about more than just the food. maybe some people feel out of control about othere aspects of their lives, or they have always felt like the blacksheep of their family, and the celiac diet makes them feel even worse. food tends to push buttons for alot of people, celiac or not, and i think it bears looking at. i so seldom hear anyone on this coping board talk about stress relief: yoga, meditation, therapy, kickboxing, whatever. i like to journal and sometimes my entries are just lists of food i miss, but it helps me enormously.

this is a difficult disease, but being furious at everyone around you won't help. obviously this is the place to vent, but i just think some people are so negative about everything, all the time; their every post is filled with anger, which can't be healthy. just offering a different perspective, or maybe i just believe in a little toughlove.

in any case this will be my last post so you can take this as you wish. good luck, all.

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