Does Anyone Get Angry At Having This Illness?

[sillyyak]

I am finding myself very angry at having this disease and not being able to eat normal junk food, etc. Does anyone have a similar experience? I get so angry I get depressed. It is very frustrating

[jerseyangel]

I really don't. I posted this thought before, but I am angry for all the years I was sick and no matter what I did or what Dr. I saw, I could never find the cause of it all. This disease has affected all aspects of my life. Family, social life, work--so many special occasions marked by my gritting my teeth to get through it, when I should have been happy and carefree. I felt isolated a lot, even though on the surface everything seemed normal. I was embarassed and didn't want to be the one who was always sick. I don't miss any food or even the convenience of the old way of eating. I would have happily done all of this starting 20 years ago if I knew I had to. This is by far the most difficult part of the whole thing for me.

[ianm]

Ironically this disease is the best thing that ever happened to me. I was angry that I wasted the first 36 years of my life because of it but that is just wasted time and energy. Two years ago my life was a disaster. I was days away from losing my job, obese and my marriage was disintegrating. Now my life is better than ever. I lost the weight, have energy and a wonderful girlfriend who is far beyond anyone that I could have ever imagined being involved with.

I am currently negotiating with a potential new job that sought me out. I came in contact with them while doing research for a project with my current job. They contacted me out of the blue and said that there may be a position opening up. It is going to take someone with a lot of drive and energy and that I would be just the man for the job. That is the first time in my life that anyone ever said that about me. The old glutened me could never have even considered or been considered for an opportunity like this.

I don't miss the the garbage I used to eat at all. My life was a disaster because of gluten and junk now it is better than I ever envisioned. celiac disease forced me to do a total reevaluation of my life and change everything about it. Be glad you have this because it will force you to live your life in a far better way.

[jerseyangel]

I'm truly happy for you that you have it all together and great things are happening for you. I'm getting there, but I am taking longer to get over the resentment I feel. I know it is a waste of time to think of things that are in the past, but we feel what we feel. I think maybe its late and I'm in kind of an introspective mood. Sorry if I've been a downer.

[ianm]

It takes time. Close to two years for me but be patient and good things will come.

[jerseyangel]

Thanks

[skoki-mom]

Sometimes, yes. My anger/frustration comes mostly from having this and *not* being sick. I have often wished that I never had that screening test because I felt perfectly fine before, I had no symptoms of celiac disease, and to be honest, I felt a heck of a lot better before I went on the diet than I do now. My digestive system was also a lot more normal before I went gluten-free. So, yeah, I sometimes wonder if it's really worth it. BUT, I know all the medical/scientific reasons etc I *should* be doing it, so I do it. Such is life. About 95% of the time, though, I am pretty much ok with it. I guess because I have no physical illness, I really don't have to think about it too much. The fact I had celiac disease pervaded my thoughts entirely for about the first 6-8 weeks post-dx, now I really don't think about it too much. Hang in there, I understand how you feel.

[tarnalberry]

Anger's pretty normal in the grieving process. I'm more angry at the lack of options - sort of a "why is everyone so limited" sort of thing, which I never thought previous to this, of course - than the disease itself, but it's almost one in the same, really.

[chuikov]

I'm not angry at all.

Having options is a luxury. The lack of understanding is just an annoyance.

I am spoiled, and I'm not going to get upset because a have to eat meat, potatoes, vegetables and rice.

I'm sorry for how blunt my response sounds, but i'm a boy - can't help it

I think it's a good way to look at it.

[darlindeb25]

I agree with nearly everything that has been said. In July I will be gluten-free now for 5 years, I was sick for over 20 before finding out. I was relieved at the time that there really was something wrong with me and it wasnt all in my head. I suffered terrible panic attacks, I was taking 40 mg. of paxil daily and still suffering. I just recently found out, which if I had been thinking I would have already known this--anyways, I found out that just as we dont absorb vitamins and minerals, we also dont absorb meds properly and that's why the paxil wasnt working. I feel my life began again that July. I wont lie and say I dont miss some of that food because I do. I crave real egg noodles, I would love a bowl of raisin bran--I want to kiss my gradchildren without worrying about being glutened. I want a glass of wine, my peachtree schnapps------yes, there are days I still get angry that I have celiacs. Usually its the days where I have reacted to something or the days my neuropathy is flaring, which I have because of celiacs.

Thursday I went to a pizza place to get my daughter a slice for lunch. I was watching the guy spin the dough, toss it, etc--then he got her piece from the oven, put it on a plate, slid it into a bag, closed the bag and I picked it up, suddenly realizing there was flour all over the bag and on me now. I am consciously reminding myself of that flour and hurrying home to get it off me before I am glutened. It can be scary at times--I get so ill if I am glutened. I have never, ever purposely eaten anything with gluten just because I craved it. I was so sick before finding out, that I wont eat something just to have it. This is our life, we have to live with it the way we do and a little anger now and then doesnt hurt. We need to release that now and then! Deb

[debmidge]

This was a hard question for my husband

While he is relieved as well for finally knowing what he has had for these past 27 years, he said he'd rather lose all his hair than have this or any disease. He doesn't miss junk food, but he misses eating fruits, vegetables, tomato sauce or spices. (Yes, I know regular celiacs can have them, but he's been so ravaged by this disease that he cannot tolerate these good foods). So I guess you can say that it's a bittersweet acknowledgment of the situation.

[happygirl]

I'm angry when I get accidentally glutened, and the problems it causes for days/weeks to come.

I get frustrated when I don't make the time to make something safe, healthy, and delicious to eat and I get stuck eating something I don't want to bc our options are limited.

After being diagnosed, I often felt "left out" at social events, etc.....I miss the spontaneity my life once had!

BUT.....considering how sick I was before diagnosis, these thoughts are worth it. I had all kinds of other potential diagnoses that would have radically changed my life for the worse, and this is a disease that is manageable, controllable. I can live my life with my husband, family, and friends, work, have a life.... etc. I think we all have our moments of frustration, (many more moments in the early phases!!!!!!!!!!!!) but I try to look at the big picture.....eat gluten OR have a wonderful life with the people I care about. It always puts it in perspective for me!

[i canary]

I'm not angry at having this disease I've focused my anger at the medical community. I was dx 2 years this coming February after spending my whole life being sick. (I was dx a week after my 45th birthday). I'm working hard to get rid of my anger at all the doctors that told me nothing was wrong with me and to go home. My body still hasn't recovered even after being gluten free all this time. I still can't eat more than the basic stuff - my body just can't handle it. On the positive side, I am feeling better than I felt in years. I can get out of bed each day (something I couldn't always do) and go to work. I'm working on releasing the anger because I feel the long term effect of keeping the anger could do as much harm to my body as gluten does. And I'm keeping in mind that we are the lucky ones that have been dx. There are so many out there with celiac disease and don't know it.

[jerseyangel]

So true about us being the lucky ones compared to all those not DX. I'm working out my anger, too, and realize that that anger may be just as harmful to me as the Celiac. It's a process we have to work through and I look forward to reaching the other side of it. Continue to feel better

[Guest nini]

I'm with those that are angry at all of the years of illness because the medical community didn't recognize what was wrong with me. I'm angry at the years of being labeled a hypochondriac, being the only one who was sick all the time, getting sick at family events at restaurants or other people's homes or even at my home... spending hours in the bathroom and missing out on things that I wanted to participate in. I am angry that for years I just kept getting sicker and sicker and that it took me almost dying before someone took me seriously enough to start to look for the cause. Every time I hear that word "hypochondriac" I cringe... I truly truly resent that label and while I am glad to know that there really was something wrong with me and the treatment is this diet, I am angry that it took 34 years to figure this out.

But am I angry that I can't have things I used to have? No. I wouldn't ever purposely want to have any of that stuff ever again because I know it would make me sick. Do I wish that companies would make gluten free versions of my old favorites? You betcha. I wish someone would make a gluten free version of a Krispy Kreme donut, I wish someone would make gluten free biscuits in a can that you pop open and bake (like Pillsbury) same thing for cinnamon rolls that you pop out of a can and bake then drizzle with icing... Oh man, why won't someone invent a gluten free version of those? I buy the Kinnickinick cinnamon rolls but it's not the same...

[Ursa Major]

I agree wholeheartedly with Nini. I am very angry that for 52 years I had the symptoms of Celiac disease, being sick from the time I was a baby, and NOBODY ever figured it out! I was labeled as lazy, moody, hypochondriac from the time I was a kid. And eventually I had to figure it out by myself! When I was so very ill this past summer, my doctor tested for everything under the sun except for Celiac disease, because I was gaining weight instead of losing it! So, she didn't think I could have it.

I am angry that doctors are so ignorant about celiac disease, that the medical schools are run by the drug companies who don't seem to teach doctors about illnesses that won't make them any profit, and they certainly don't teach doctors anything about drug-free cures of many illnesses. How often have I heard from people that they've been told by their doctors that they had to take the drugs they were taking for the rest of their lives. And there are cures out there for some of those illnesses!

I am angry that my family won't help me in staying safe, leaving their crumbs and dishes and utensils that are covered in gluten all over the house without giving my well-being a second thought.

But am I angry that I have Celiac disease, or that I can't have certain things? No, I am not. I am thankful that I finally figured it out (even though this week it doesn't feel that way, I got glutened somewhere and I am aching again) and that I have hope of getting better. In fact, I finally have hope that I will find out some day soon what it is like to feel well! I don't have any idea what that feels like.

[Rusla]

I am angry with doctors for not listening and being so dense. I am angry for having to be sick for half my life. I wish I would have known about this so very long ago. I have adjusted well to this way of eating. Some days I think I miss pizza or I miss dumplings in Chinese food. But I have vowed to find a way to make the dumplings and samosas.

I am angry at people who don't believe what you tell them and they and doctors treat you like a dumb cluck.

I have vowed this upcoming year to get articles out that will help those with Celiac, gluten intolerance or food allergies.

I am not angry at this disease because it is the best thing that has happened to me, in it's own bizarre manner. I am angry that we have had to suffer with this for so long. I am angry that some of the foods are so expensive if one wishes to buy them, this is because it is like they are telling us that if we wish to poison ourselves then it won't cost as much. I find it amazing that foods that are bad for us and others are less expensive than good healthy food, those are the things that make me mad. This disease does not make me mad.

[Becky6]

I just started gluten-free a month ago and while it was hard during Christmas not eating the stuff I usually do, I am so glad that I finally feel better and would never want to touch the stuff again! I am pissed that for 10 years I was given all these different diagnosises but they were never sure. No one ever mentioned celiac or gluten at all! My blood tests were neg but all of my symptoms are magically going away after being gluten-free! Sometimes I am sad I can't eat certain foods but happy that I am on the mend!!

[frenchiemama]

Sometimes. When I go somewhere and my only choice is a salad with no dressing, while everyone else is eating pasta, that makes me feel pouty. Or when people eat things that I used to love in front of me while saying "Oh this is SO good. Too bad you can't have any. I would just die if I had that." (of course, that usually makes me more angry with the people).

Most days though, I'm ok.

[Idahogirl]

I am definitely angry at having celiac. I was not sick before, maybe some brain fog and D every once in a while, but nothing terrible. I am angry that I am forced to be gluten free because I'm pregnant and can't take dapsone for my DH (and don't want to deprive the baby ), and by the time I can have dapsone again, I may be so sensitive to gluten that I will actually do more damage to myself and be more sick then when I was eating gluten regularly. My vitamin levels are all normal, and I've never had a problem with my health at all. My immune system has always been great, I've never had a problem gaining weight , and have not suffered from malnutrition or malabsorption.

This disease may be a good thing for others, but I feel like it has put a stranglehold on me. I am dealing with it, and the anger isn't taking over or anything, but inside I just want to scream that this curse has been put on my life. I also, in a way, wish I could just live on in ignorance and deal with the consequences later. As much as everyone says they're glad they can't have most food that's bad for them, like Pizza Hut or donuts, I really like those foods. I believe that too much of anything is bad, especially fatty foods, but in moderation they are fine. They are enjoyable, and I may never be able to enjoy them again. That is a big deal for me. Not to mention being able to order pizza in a pinch when relatives are over, or go to Olive Garden with your girlfriends. Or pick up a hamburger on the road. Or enjoy a potluck. The list goes on....

So....I guess my answer is yes....

Lisa

[Guest nini]

HUGS FOR LISA {{{{{{{{{{{{{{{{{{{{{LISA}}}}}}}}}}}}}}}}}}}}}}}}}}

I'm sorry you feel that this disease has put a strangle hold on you and that you are feeling like a curse has been placed on you. I'm thinking that you are one of the lucky ones that got diagnosed long before suffering for years and years of being deathly ill. You may not see it that way, but for those of us that have been so sick that we almost died, it's hard to put ourselves in the position of someone who wasn't ill prior to dx. I'm hopeful that you will be able to come to grips with the emotions of this and not be so resentful or angry. Try to change your perspective and look at it that you've been given a gift of better health and being healthier for your baby. Perhaps your baby will be dx with this and you will be able to prevent your baby from having a lifetime of illness and medicine by just watching their diet carefully. I am not trying to be mean, I just have a hard time seeing it from your point of view. I'm trying to be sympathetic, but I just can't.

[GC1]

For a few months I was extremely angry, especially after well over a hundred doctor and hospital experiences (mostly asthma), from 2 weeks old through my 10th birthday. As well as dozens more through my 48th... when I figured out Celiac largely from a chance meeting with an old man in a Kmart pharmacy, who told me of having the disease. And as many have said/experienced; the doctors never mention Celiac. The further along this goes, the less I miss wheat products, as we look for alternatives all the time. We just got together with my mother and sister for [a late] Christmas, and I did most of the cooking... my mom wasn't too crazy about me taking over her kitchen, but when we sat down to eat, she was very satisfied with the meal. I smoked a turkey (4 hours), made dressing from 100% corn meal (no mix), thickened the gravy and fresh cream corn with corn starch, cooked fresh green beans, made baked sweet potato/butternut squash, etc, and skipped the traditional rolls. And we all agreed it was the best meal we'd ever made... and it was 100% wheat/gluten free. Without the wheat to make everyone half sick, we all enjoyed the meal and the time together much more.

I do miss biscuits 'n' gravy, biscuits with butter 'n' molasses, chocolate covered glazed donuts, french/italian bread with EVOO, butter, and basil. Also a few sandwiches we made, but all the rest is just a bad memory.

GC

[key]

I was first so excited to know why I was so sick and why my stomach had hurt for so long, etc. I felt great for the first four months. THen started getting gluten I believe by not being as careful or my body became more sensitive over time. SO most of the time I feel great as long as there is no gluten. I just went through a couple of months of being depressed over this diet and I think it was more from being gluttened. I have realized now though, that I need to not ever take the time to focus on the negative and look on the positive side. LIke focusing on how much healthier I am, the foods I can eat and be sure that I am taking time to make myself something healthy to eat. Being depressed over it and feeling sorry for myself made me a whole lot worse! Like I said, I try not to even go there with my thoughts anymore.

My most frustrating thing though, is not being able to eat out! I am vegetarian too, so it makes it very hard. I miss it. It was a fun time for my husband, kids and I.

I can relate to how you are feeling, because I felt the same way about a month ago, so wanted to let you know what has helped me. Thinking positively isn't always my best thing, believe me! Lately though, I have been making myself more foods and just focusing on what I can eat and trying to stay healthy. It helps me knowing now what happens to me when I do get gluten. That has to be the very worst part of having this disease!

Here's to hoping you feel better soon! Try and go out and get some of your favorite gluten-free foods and enjoy them, get some exercise and call some friends!

Sincerely,

Monica

[pokerprincess]

Jerseyangel, I feel exactly the way you do. I am angry for all of the time I have lost being sick. I get angry when I get sick accidently. I am so careful! That junk food is not any better for anyone than it is us. It is just more serious for us. This gives me a great excuse to stay away from it.

pokerprincess

I really don't. I posted this thought before, but I am angry for all the years I was sick and no matter what I did or what Dr. I saw, I could never find the cause of it all. This disease has affected all aspects of my life. Family, social life, work--so many special occasions marked by my gritting my teeth to get through it, when I should have been happy and carefree. I felt isolated a lot, even though on the surface everything seemed normal. I was embarassed and didn't want to be the one who was always sick. I don't miss any food or even the convenience of the old way of eating. I would have happily done all of this starting 20 years ago if I knew I had to. This is by far the most difficult part of the whole thing for me.

[darlindeb25]

We all are or have been angry because of this disease. Some of us are angry because we found out we have this disease when we didnt even know we were sick--I understand that anger--you feel like you are being punished and you dont know why. Then some are angry finding out they have this disease after being sick for a short time and you feel cheated too. Now some of us have been sick for years and years and years--to us it was almost a blessing to find out we actually do have a disease and its not in our heads. I was not angry at celiacs as much as I was angry at all those doctors that let my life stay so miserable. Every party, every birthday, every holiday was fun, but I always knew I would suffer later on--I would be miserable after the meal. I always promised myself I wouldnt eat much, but it wasnt the amount I was eating, it was what I was eating. Bread was comfort food, I thought that toast made me feel better and it was probably the biggest culprit. The day I decided to try going gluten-free, I never intentionally cheated again. That was 4 years ago last July. Now after 4 years, I get angry at celiacs and sometimes ask, "Why me?" My celiacs is under control, but now I am slowly developing other intolerances. No soy, no corn, no tomatoes--I cant have my favorite veggies without pain anymore--broccoli, cauliflower, cabbage, brussel sprouts--my sweetie is afraid my body will reject all food in time--I dont think that will happen, but it is all so aggravating. Then there is the neuropathy I have because of being vitamin and mineral deficient for so many years. The neuropathy slowed when I went gluten-free, but now it is flaring again. I do ask, "Why me?" I ask, "Haven't I had to deal with enough already?" BUT, I guess not! I do know that only the strongest people survive diseases. We are a very tough group of people. I am sure you all know people who could not handle being sick like we have been, I know I do. Most days I am thankful that I know what is wrong--usually just a bad day when I ask, "Why me?" Deb