I Feel So Angry

[virginiagl]

Logically it seems silly to be angry and I am trying not to be angry, but none the less I am. I hate having to be THIS different from everyone else. The comments are starting to flow in and now I understand more about why others are angry too. Comments like "oh I bet you can have a little and it won't hurt" or "my friend has that and it's okay for her to eat it once in a while" or "I think this is crazy and you are fine", etc...

Well I'm not fine, not even close. I am in pain from inflammation that seems to never want to go away...this past week it has been really bad since I accidentally ate something with gluten...,a scale that won't budge is really pissing me off because I need to lose 50lbs, and this strange skin rash that never seems to heal that has been coming and going in the same place on my hip for months(could be dh?)is starting to have me a little worried. To top it all off, for the third day in a row the office brought in food and of course my vote doesn't count. That doesn't necessarily make me angry, but it hurts my feelings alot. I know I'm just one person with wacky food problems and they shouldn't have to cater to me...that is the logical thing to realize...but the feelings that crop up still crop up despite logic.

I think at this point I probably need some counseling. Anyone here ever have to go to counseling to come to terms with this stuff?

[mbrookes]

Wow! You are having a rough time. Let me tell you something that has helped me through some rough spots. "I cannot control what happens to me. I can only control the way I react to it."

When people make stupid comments, try to realize that they just don't understand, and may never understand. This celiac is something we live with and know. They don't. A good answer (if you don't mind ruffling feathers) is "Would you encourage a recovering alcoholic to have just a little drink? Well, my situation is just as serious."

By all means, do get counseling. If money is a problem, check with your local mental health center. Most of them charge on a sliding scale. You may need just one good session, or it may be ongoing for a while, but the feelings you have now will slow down your recovery. Try to find a support group in your area. If there is not one, try to meet at least another person who has celiac.

I have been angry, depressed, sad... all of that. But not any more. After a little more than two years I know how important my health is. I also know I have not felt this good in many years. (I'm 65, but I look and feel much younger.)

Please check back with us on a regular basis so we can keep up with you.

[sandsurfgirl]

Having been misdiagnosed for 40 years I have processed a lot of anger. I've been through so many emotions since I got diagnosed about 5 weeks ago. Lately I've been reading novels a lot to just escape a bit.

Accepting that anger is a natural part of the grieving process will help you heal and move past it quicker. This is a grieving process just like if somebody died or you had another terrible loss. We lose a lot when we are celiacs. It's not just food, but it's freedom to eat when and where we want to. It's social experiences and culture. People get PhD's in cultural anthropology with an emphasis on food because food IS culture. I'm Italian so losing out on pizza and pasta cooked by my family or my favorite Italian restaurant that took me YEARS to find (because in So Cal most of the

m are not real Italian or even close.)

There is so much loss you have to go through and face. I have thought about counseling but for now I'm just working through it. I have a very supportive husband so that helps a lot.

When people make a comment, take it as a teachable moment. You have great power in that moment because they have opened the door for you to educate them without you barging it down. A simple explanation that this is an autoimmune disorder which in many ways makes it more serious than an allergy will do. Explain that your body perceives gluten as a toxin so it actually destroys your own digestive system. When I explain that to people their eyes get huge and they usually say "I had no idea."

Just today a woman at my church group who has food intolerances was telling me that if I take enzymes I can eat gluten again. I patiently explained to her that with celiac that will never be the case because even if i get strong enough not to have symptoms the destruction is occuring silently. She thanked me for explaining it.

The onus is on you to get what you need at work. You need to speak up for yourself with patience and kindness. Ask the people who order food if you can please help them order something that you can eat. And then thank them profusely when they comply. If there is a potluck, then you need to bring a couple of items that you can eat and make sure you arrange it so you get there first to get your items, or put your items away in the fridge until the last minute.

[Reba32]

If someone says to me that I'm making it up, or I'm overreacting, or it can't possibly be that bad, I just tell them that if I eat even a small crumb of bread it will cause me pain and intestinal damage. If they want to see me writhing in pain within half an hour, then there's something wrong with them

Seriously, it's not us that's different. It's all of them. They have no idea what they're missing out on by wasting on their time eating spongy tasteless Wonder bread and store bought fake chocolate cakes!

[whyme]

Logically it seems silly to be angry and I am trying not to be angry, but none the less I am. I hate having to be THIS different from everyone else. The comments are starting to flow in and now I understand more about why others are angry too. Comments like "oh I bet you can have a little and it won't hurt" or "my friend has that and it's okay for her to eat it once in a while" or "I think this is crazy and you are fine", etc...

Well I'm not fine, not even close. I am in pain from inflammation that seems to never want to go away...this past week it has been really bad since I accidentally ate something with gluten...,a scale that won't budge is really pissing me off because I need to lose 50lbs, and this strange skin rash that never seems to heal that has been coming and going in the same place on my hip for months(could be dh?)is starting to have me a little worried. To top it all off, for the third day in a row the office brought in food and of course my vote doesn't count. That doesn't necessarily make me angry, but it hurts my feelings alot. I know I'm just one person with wacky food problems and they shouldn't have to cater to me...that is the logical thing to realize...but the feelings that crop up still crop up despite logic.

I think at this point I probably need some counseling. Anyone here ever have to go to counseling to come to terms with this stuff?

I understand your anger!! I am new to this too and it doesn't seem fair. I totally get it about work though. I would like a little consideration. They just order subway or stuff I can't touch. I have actually personally requested something different and have been accomodated. hold tight and stay positive, I KNOW it is hard. I have found the people on this board are VERY understanding unlike the general population.

[dilettantesteph]

I was very angry too. It really didn't help that gluten also affects my emotions. They were on a roller coaster ride while I was trying to figure out this diet and would get healthy just to accidentally gluten myself again. Put off weight loss plans until you get this stuff figured out. Don't make it harder on yourself than it has to be. My weight yoyoed quite a bit till I got things figured out. I'd eat those gluten free cookies and it would go up. I'd eat accidental gluten and everything would get flushed out of my system and my weight would go back down again. I found it very difficult at first.

[sandsurfgirl]

I was very angry too. It really didn't help that gluten also affects my emotions. They were on a roller coaster ride while I was trying to figure out this diet and would get healthy just to accidentally gluten myself again. Put off weight loss plans until you get this stuff figured out. Don't make it harder on yourself than it has to be. My weight yoyoed quite a bit till I got things figured out. I'd eat those gluten free cookies and it would go up. I'd eat accidental gluten and everything would get flushed out of my system and my weight would go back down again. I found it very difficult at first.

I agree that weight loss can't be a goal right now. I need to lose 60 pounds. I never had a weight problem until my thyroid went haywire 7 years ago. I got unlucky and got the hypothyroism and the celiac where my body hangs onto calories instead of making me too thin.

I just can't do caloric restriction while I'm healing. It's weird though because I've lost inches but not pounds. My husband was just telling me I look like I'm getting smaller all over, but I still weigh the same.

[ItchyMeredith]

It took me about 4-6 months to stop feeling angry. Every now and again I still feel sorry for myself but I'm doing fine. I try to look at the bright side: celiac is a chronic disease but it can be completely controlled by diet. If I have to have a chronic disease, I'll take this one.

Hang in there. What you are going through is normal.

[DownWithGluten]

Logically it seems silly to be angry

No it doesn't! I think it IS logical to BE angry!

I never went through that grieving period. Maybe I was 'lucky' in that I was suffering so bad, I was at the end of my rope and thus was hoping that the gluten-free diet would work...I was desperate for ANYthing to work. So when it did, and I began to realize my freedom from the erratic, unpredicatble bouts of digestive wreckage and pain...I was relieved.

My anger/resentment is there, though, now. Just, I find I am not patient when other people whine about not liking their food, or not having what they want, or blah blah blaaah. I'm like...look you have 100 million things to chose from. I have none. I don't want to hear it.

So it's made me a little less tolerant of other's complaining, I think. There's some bitterness that has built up. Then I try to remember, well...if I think back to how I WAS, I am glad for the diet. What I am NOT glad for, though, is that I even have this stupid thing to deal with in the first place. but then again, it could be worse in that I could have been born brain damaged or blind or something (no offense to blind people). So I go back and forth feeling shafted and angry to trying to be grateful it's not worse. but again -- me having tolerance for people complaining about petty things has gone down.

My hope is that one day gluten intolerance will become more in the forefront, and more places will have MANY options and accommodate much better, so that we will be free to eat food without all this drama and restriction and planning like the rest of the world. it is POSSIBLE to have things gluten-free and still taste just as good...however right now it's just not available out there as much unless we do it ourselves. I can only imagine how much worse it was years ago. I feel I'm lucky in a sense that I started this diet around when more awareness was growing. At least I have the luxury of going to Whole Foods and buying some gluten free pretzels. 5 years ago that probably didn't exist.

[AKcollegestudent]

Oh god, I was so pissed off the first couple months. I didn't even realize that I was totally over being angry until tonight when a friend went, "Try this!" and I'm going, "Yeah, no, keep the malt beverage. Otherwise, you get to deal with me in the morning." And whereas even a month or two ago, my eyebrows would have been arched up off of my face (or nearly) and I would have been at least a little annoyed that a(n) (inebriated) friend forgot such a detail, tonight I just laughed.

Hells, four or five months ago, I would have considered flaying the person alive, even if (like tonight) she was at least tipsy by that point.

Tonight, I just laughed again when she offered it to me for a second time a bit later.

It gets better, I promise. A lot of folks (myself included) go through stages of grieving for gluten, even though it's poison. And the anger is, in some ways justified, and in other ways is just an expression of everything going on in your head. Either way, it really is healthy for where you are right now.

[Wenmin]

As for work, when I know they are having a order out day or potluck dinner, I bring something that temps all others. So when they are eating their Subway poison sandwiches, I heat up leftover baked potatoe topped with barbequed beef or leftover boiled shrimp. etc. The smells really overpower the break room and everybody that walks in says, "MMM...that smells good!" I just smugly sit and grin. Knowing they can't have what I have, and I don't want their poison food anyway! Gives me some firepower over them and a little satisfaction.....

Wenmin

[newgfcali]

I am trying not to be angry, but none the less I am.

Have you heard of Elisabeth Kubler-Ross? She came up with the five stages of dealing with grief, which then expanded into dealing with any life-changing event. They are:

Denial, Anger, Bargaining, Depression, Acceptance.

So maybe you skipped stage one and charged right into stage two. But know that it's a process we're all going through. Maybe by giving it a name (Oh... this is the anger stage) and recognizing that it's all part of working through this huge change, you can give yourself permission to be mad and it'll help ease the transition to acceptance.

[Don in Dallas]

I completely understand your frustration. I am gluten free now for 4 weeks and if anything, I feel worse and not better. I do have moments however that I feel OK, but they seem far and few between. On a positive note, I have lost 35 lbs. which I needed to do. I try to keep that in the forefront of my thinking. If I let myself think too much about how "life changing" this is, just not for me but my wife as well, then I get angry and depressed as well. When I was first diagnosed, I really didn't think too much about it. I did not realize just how this was going to change my life. I have gotten no support from my GI. When he first diagnosed me, he mentione that he "thought he had a brochure around the office somewhere about Celiac. He didn't make it seem like any big deal. For him, I don't guess it is..........Tomorrow, I am definitely going to be looking for a new GI, nutritionist, etc. I have got to find someone who can help me with this. I have GOT to get some help. Any comments or encouragement will be appreciated......

Don in Dallas

[clemsnkitti]

I've been gluten free for almost two years now and I am STILL angry most of the time.

That may be because I've managed to slowly poison myself with mini cadbury cream eggs and kaopectate recently and my body is still trying to recover-- or it could be because sometimes people really have no idea how to react to something they truly don't understand.

A friend recently told me I should go to a celiac meetup group because then I could find a nice celiac boy and get married. Her rational was, "That's what people with AIDS/HIV do. So why can't you do the same? Then you don't have to worry about it." I wanted to claw her eyes out, if we're being honest. I've had celiac compared to a lot of things but I think AIDS is a little extreme.

I've also gotten "Oh man, that sucks, if I had that I'd kill myself" and other very insensitive remarks.

The truth is people just DO NOT think before they speak and they DO NOT always want to understand something they don't get right away.

You'll be angry, you'll feel like you're missing out on things and you'll be sad and feel like the only person in the world who is THIS different.

But, then you'll find friends who want to understand and go out of their way to make sure you can eat where they go. You'll find people who don't find this to be a big deal, and who will argue for an hour after you leave sick with a restaurant manager because as soon as you felt ill they ALL stopped eating and refused to pay to eat somewhere that made you sick. You'll find you feel SO much better and can DO so much more in a day because you're not in constant pain and agony. And you'll realize that all the stupid people in the world, and trust me, that's most of them-- are not worth your time.

It's a process, one that you are going to have to deal with everyday, and one that I'm sure each one of us has our moment that we want to stamp and scream and shake whoever/whatever made us this way.

Everyone has their challenges in life that they have to surpass-- this is just ours. It is what it is.

Anger only sustains for so long, it does get better.

[Lynayah]

For me, this has been a lot like going through the stages of the Kübler-Ross model of dealing with grief:

Denial, Anger, Bargaining, Depression, Acceptance . . .

Open Original Shared Link

Except, I'm no where near acceptance yet. There are days when I think I am, but I'm just fooling myself. I am not there yet.

Weight, too, has been an issue. I need to lose 15 pounds and it is driving me crazy since I've kept over 100 pounds off for over 18 years. I know how to do it, but not since I've gone through the looking glass.

Augh.

Thank goodness we all have each other here to support and understand one another. I know that sounds corny, but what the heck.

Good thread -- thanks everyone for posting.

[Glutin-Free Man]

I've also gotten "Oh man, that sucks, if I had that I'd kill myself" and other very insensitive remarks.

I have a co-worker (a good friend actually), who used to say that to me a lot.

Recently he was diagnosed with Open Original Shared Link, so now I get to make Pirate jokes in return, as he tends to wear an eyepatch to help with the vision in his other eye.

Humor and anger can often be very closely related

David

[Yoshi]

Denial, Anger, Bargaining, Depression, Acceptance . . .

Can these steps happen backward? I've been in acceptance-mode since I was diagnosed a month ago, after many many years of being misdiagnosed with everything else. Now, I'm feeling very depressed.

[Lynayah]

Denial, Anger, Bargaining, Depression, Acceptance . . .

Can these steps happen backward? I've been in acceptance-mode since I was diagnosed a month ago, after many many years of being misdiagnosed with everything else. Now, I'm feeling very depressed.

You bet they can. I can totally relate, as I'm sure countless others here can, too. I went through the same thing.

At my last GIG meeting, someone mentioned that it is also very common to go through a six-month slump where you feel your body isn't adjusting . . . and you feel as though you're getting glutened by cc, or by everything you eat, or that maybe you'll never be able to eat anything due to being sensitive to what seems like everything.

It hit me last month, right at about the six month mark.

They tell me to be patient and I'll get better (actually, I am feeling better already).

When it comes to emotions and getting glutened, the first year is probably the biggest challenge, but everyone is different.

As far as the stages coming at different times: I lost my dad when I was a teen. For years I thought I coped with it fairly well -- denial, grief, depression, then coping with it all, but you know what? I never got angry about it.

It wasn't until years later, when I was pregnant with my first child, that I FINALLY went through the anger stage: "It's not fair that my dad wasn't able to live to see his grandchild!"

And it wasn't until after that I can say I was fully healed from losing him.

So, I've come to believe that all of these crazy feelings that we all go through are important. We need to feel them all in order to get to the other side of them.

[1morething]

I've been gluten free since Nov.2008 and I went for supper at my mother-in-laws tonight and she had made meatloaf. So I asked what she put in it and she said "nothing bad, I put meat, onions salt, pepper, and soya sauce". Hmmmm OK Then I asked did you put bread crumbs in your meat. She said "No, I only put a piece of bread" :o :o I can't believe after almost 18 months, she still had no clue. I tell you, you really can't let anyone cook for you....

Yesterday I went to a restaurant for lunch. I told the waitress I had a gluten allergy and she wrote it on her pad. I purposely ordered a garden salad with Olive Oil. I told her "No croutons". I swear to God, within an hour I had bloating and cramps like never before.. AHHHHHHHHHHHHHHH So what happened??? Was there croutons in the salad that the chef just took out of my plate before serving it?? Who knows.... I'm having a real hard time trusting restaurants now....

[idonteatwheat]

People can be so clueless and insensitive. I've been dealing with it for about 2 years now and some people have been fabulous and others horrible.

I suppose the worse has been my husband who during the first year would conveniently forget and offer me things I couldn't have or suggest places to eat out with nothing I could eat or where I had a horrible reaction. He's still alive and we aren't divorced but I went to bed many a night with horrible hurt feelings and anger.

I have so many stories of dumb comments and suggestions (like well just don't eat, have a soda) but I think the most hurtful is that I hardly get asked to anything that might involve eating out or food. The social exclusion from that is the worst. Oh and no one gets how exhausting it can be when you accidentally get glutened, they just think you are being a hypochondriac, was told once oh how can a tiny crumb make you that sick. I just wanted to call them in the middle of the night when I was up walking the floor in pain and living in the bathroom, but of course I would never do that.

[idonteatwheat]

I've been gluten free since Nov.2008 and I went for supper at my mother-in-laws tonight and she had made meatloaf. So I asked what she put in it and she said "nothing bad, I put meat, onions salt, pepper, and soya sauce". Hmmmm OK Then I asked did you put bread crumbs in your meat. She said "No, I only put a piece of bread" :o :o I can't believe after almost 18 months, she still had no clue. I tell you, you really can't let anyone cook for you....

Yesterday I went to a restaurant for lunch. I told the waitress I had a gluten allergy and she wrote it on her pad. I purposely ordered a garden salad with Olive Oil. I told her "No croutons". I swear to God, within an hour I had bloating and cramps like never before.. AHHHHHHHHHHHHHHH So what happened??? Was there croutons in the salad that the chef just took out of my plate before serving it?? Who knows.... I'm having a real hard time trusting restaurants now....

You know I have that sometimes too. I know I react to MSG and I have wondered at times if they put it on some salads. I googled it a while back and found that there is some chemical farmers use that is similar to MSG that gets into the pant's system and cannot be washed off. It makes me crazy because it doesn't happen all the time just sometimes. I also know someone who is allergic to some of the things in the field greens mix, maybe you have an allergy to one of the things in that.

[DiscGolfer]

I never went through that grieving period. Maybe I was 'lucky' in that I was suffering so bad, I was at the end of my rope and thus was hoping that the gluten-free diet would work...I was desperate for ANYthing to work. So when it did, and I began to realize my freedom from the erratic, unpredicatble bouts of digestive wreckage and pain...I was relieved.

I was reading this thread and was thinking of how to put my thoughts into words when I read the words above.

I couldn't have expressed my feelings any better.

My anger came from not being diagnosed.

In 1973, in Kansas City, nobody knew why I was so sick, or why I had diarrhea for two consecutive months and lost 35 pounds.

My anger came from having to keep my stool samples in my school locker, and having to carry the samples home on the bus during the hot month of September that sophomore year of high school.

My anger came from being embarrassed about losing control of my bowels after taking a handoff from the quarterback during football practice.

My anger came from the invasive enemas, the barium swallows, and that final act of pulling the stainless steel capsule that contained a sample of my small intestine in it back out of my throat.

I became happy when I found out that if I stopped eating gluten my life would return to normal.

That's all I wanted to be... normal and happy.

That's how I am now.

Well, maybe not normal.

[i-geek]

I can't honestly say that I'm angry about having to maintain a gluten-free diet or about having this disease. My family has so much autoimmune disease on both sides that, since it seemed inevitable that I would end up with something, I'd much rather have this than go through the complications of RA or diabetes or autoimmune thyroid diseases. I've watched too many relatives suffer and if this is all I have to deal with, I'll take it. I like cooking, and now that I have my energy and will to live back, it's fun to play around in the kitchen.

I also can't seem to muster up anger at others; more, it's that I'm sometimes astonished and disappointed by them, although my family and most friends have been great. Then again, my good friends are all either fellow immunologists in my grad program or have food allergies/intolerances of their own so they understand and don't give me a hard time.

I am angry, though, at the medical profession in general. I've been having GI problems and bad headaches for years. I'm infertile. I was of normal weight and length when I was born, but only 13 lbs when I was 1 year old. I stopped growing at 14 and am shorter than both of my parents and most of my family on both sides. No doctor has ever done more than a cursory set of exams and sent me on my way. The latest doctor ran an incomplete celiac panel and when that came up negative (although I'd been very gluten-lite for weeks) dismissed it as a possibility. I've had to diagnose and treat myself and I find it absurd.

I'm also angry at Big Food and government policies that prop up Big Food. I know that wheat is cheap and plentiful because the government subsidizes the farmers while simultaneously keeping the price of wheat down, so that the farmers have to keep growing more and more staple crop to keep their farms operational. And that makes me angry. The only ones benefitting are the big processing corporations and the officials responding to the lobbyists; meanwhile, wheat ends up in so many products. At least labeling is getting better, but it's still ridiculous.

[coltsfan18]

I just want to thank all of you for posting on this topic. I have been gluten-free for a year, and could give you a laundry list of all the positive changes I have seen in my life. I have energy, my joints don't hurt, my face cleared up, and, most importantly, my digestive issues have all but disappeared.

But, lately I have felt a lot of anger of not being able to do everything I used to. I, too, work at an office where lunch is constantly being brought in, and no one gives any consideration to me. They are all eating gourmet catered food and I am munching on a gluten-free sandwich and an apple. I constantly get the comments like, "I cannot believe you are still eating that nasty bread", "I would kill myself if I had what you have", and (my favorite) "this cookie (or insert any gluten-y, yummy food) is unbelieveable, do you want some?". This is from people that have known about my condition for a year!! I just recently went on a gluten- binge because I have been so angry, and I feel awful! I full year without gluten, and I just spent the last three days eating without abandon. I couldn't even get off the couch today I felt so sick!

I am really glad others are feeling this way too. Your posts have really helped me, and I know we can get through this! I do know that my true friends have stuck with me, and do make sure I can always eat with them. I think it is just really hard when you find out who are your real friends, and who really doesn't care about you.

[Melanie1330]

I just want to thank all of you for posting on this topic. I have been gluten-free for a year, and could give you a laundry list of all the positive changes I have seen in my life. I have energy, my joints don't hurt, my face cleared up, and, most importantly, my digestive issues have all but disappeared.

But, lately I have felt a lot of anger of not being able to do everything I used to. I, too, work at an office where lunch is constantly being brought in, and no one gives any consideration to me. They are all eating gourmet catered food and I am munching on a gluten-free sandwich and an apple. I constantly get the comments like, "I cannot believe you are still eating that nasty bread", "I would kill myself if I had what you have", and (my favorite) "this cookie (or insert any gluten-y, yummy food) is unbelieveable, do you want some?". This is from people that have known about my condition for a year!! I just recently went on a gluten- binge because I have been so angry, and I feel awful! I full year without gluten, and I just spent the last three days eating without abandon. I couldn't even get off the couch today I felt so sick!

I am really glad others are feeling this way too. Your posts have really helped me, and I know we can get through this! I do know that my true friends have stuck with me, and do make sure I can always eat with them. I think it is just really hard when you find out who are your real friends, and who really doesn't care about you.

Coltsfan,

Thank you so much for bring this topic up! I was diagnosed about 9 months ago, and I have been so angry lately! I have been on this site before, but then quickly retreated due to my denial. But after some time, I realized that I need some honest support from others who are going through this, or have been where we are. My husband is a wonderful man, and he tries, but he just doesn't get it. He doesn't get the emotional part to it. He thinks because I am physically feeling better that it is all good. And he doesn't think twice about eating ice cream cake in front of me, or ordering a pizza from my favorite place. But it all kind of came out this weekend when we went for a one night get away with our friends (as a gift for his birthday from them) to a beer tasting seminar and dinner. Although it was not pretty for a day or two, I think he understands a little better how difficult this is. And today at work, a coworker commented about my weight loss and said "maybe this celiac thing is a blessing in disguise." What??? Which was followed by "did you try the raisin bread in the breakroom?" a couple of hours later.

I feel so much better after reading all of this tonight! I thank you all!!! It has been so helpful! I don't know anyone personally that had celiac disease, but I feel I do now.

Go Colts! (I love Peyton!)