Grieving

[zippyten]

The comments from people on grieving for the old way of eating was exactly what I needed to read right now, thank you so much. I was recently diagnosed & have been on the diet for only two days and am still in shock that this is going to be a forever thing! Sometimes I am in denial about it, that it's not really celiac disease and eventually I'll eat a bagel again (I live in New York and bagels are pretty much a way of life).

I was so struck by the comment about being sad in the grocery store. I was practically in tears in the health food store yesterday, of all places, as my 8-year-old daughter kept bringing me all kinds of gluten-inflicted products asking helpfully: "How about this, Mom, can you eat this?" and I kept having to say "nope, nope, nope." There was something ironic about being in a health food store and most of it was stuff on the forbidden list.

Anyway, I've been doing a lot of thinking about this whole thing, which as you know you can't avoid, and since going through such a drastic diet change is all about deprivation and loss, it is really no surprise that we need to have a mourning period before being able to adjust. At first I was ashamed that I felt so depressed about the diagnosis -- my father and other relatives on his side died of colon cancer at very young ages, and I was really scared I had colon cancer. When my colonoscopy was normal, and I shortly afterwards found it it was celiac disease, I couldn't manage to stay grateful for very long, and that made me feel guilty. I know there are lots of very sick people who'd give anything they had to be in a position where they could control their health by just avoiding certain foods. But I think that we all need time to come to grips with the diagnosis, because it really is a very difficult, all-encompassing change of life, which most people fortunately are able to find the strength and grace they need to just do it. But I think we are allowed to feel a little bad about it first before lacing up our boots and moving on.

I have some faith that I won't feel so depressed about it as my body starts feeling better, and I have a lot of hope, actually, that some of the health issues I've struggled with for years now will finally go away -- and if that's so, then giving up gluten will start to seem like a fair trade-off, I'm sure. In the meantime, I thank everyone for sharing their information and their feelings, as both have been more helpful to me than I could ever say.

Ellen

[wclemens]

Ellen, my father and his brother also died of colon cancer, and my sister had trouble having a couple of polyps removed, while mine came out quite easily, so I really relate to your comments.

I'm 59 and have been on this diet a long time, so I want to encourage you and others that it will seem much more normal after you've been on it awhile. I think it is ironic that so many people are now on the Atkins' Diet, because it is so similar, and I used to feel that I was the only person in the world who had to eat the way I did (which was a long process of elimination to determine which foods those actually were).

I'm enjoying creating some new desserts these days, because I care for my grandson, who is 10 months old and stays with me weekdays. We discovered that he was gluten sensitive and allergic to milk and dairy in his first couple of weeks of life. I've created a teething biscuit for him, some fruit and vegetable concoctions that he likes, and I've introduced Soy Yogurt now, which he LOVES. Watching him taste these things helps me appreciate the many foods I CAN have even more. It's funny how our perspectives change after eliminating gluten and any other foods to which we're allergic, from our diets. Our thinking becomes clearer, and we can function in a much more positive manner.

Good luck to you all in your journeys on this path. I've been so busy with the baby lately that I've missed getting on the board very often, but it is so good to know you're all still here. Welda

[KAthyB]

I am not celiac but my 18 year old daughter was diagnosed in Dec. I seem to be doing all the grieving and she has accepted her daignosis. Once, on a trip to the mall, the aroma of pizza and chick-filet got to her and she cried. That was it. Last week her GI called to say that after 6 weeks gluten-free her TTG was normal. She has seen a improvement in leg pain and abdominal discomfort but her reflux symptoms, burning and burping, are still a problem. The doc suggested that she begin to eat at least two slices of bread a day, more if she'd like, and scheduled her for upper and lower endoscopy/colonoscopy and ph probe since the first biopsy was negative to confirm the celiac diagnosis and rule out "anything else".

Her eyes lit up when I told her she had to go off the gluten-free diet a bit. She ate just bread at first, then 2 girl scout cookies, next pizza at the mall and finally some chinese food. She felt terrible after each of these foods and now I have to beg her to eat the 2 slices of bread. Going back to her old favorites and feeling sick again caused her to lose her desire for old foods. At first, I thought the doctor was cruel to put her through this but my daughter is now convinced that the gluten is the culprit. She can't wait to have the testing over with (March 16). It is normal to grieve and you should, but just think how much better your life is now that you are gluten-free.

KathyB

[JsBaby-G]

Suzn,

I think people go through adjusting to the diet differently. I went the denial route, I ignored the fact that I couldn't eat flour for about a year. It gets so much easier to deal with the diet and way of life that you realize that eating gluten free is so much healthier and you can see how many problems wheat causes. Although people who eat it all the time won't admit that for the life of them!! We are an elite club so get a new lease on life because we are no longer slaves to wheat!!!

[tagger]

Here's my real giggle. ( mean really). My inlaws were absolutely not empathetic to my gluten-free diet. At xmas I offered many times to make the stuffing, but no way. At thanksgiving etc I would cook a cornish hen or similar and take it with me.

Recently my father in law was diagnosed with celiac disease. Now they're all over me for info, recipes etc.

I know this is mean spirited, but I give them a little help and figure he can join a Celiac Assc etc and find out himself how it all workds.

My litttle victory!....tagger

[JsBaby-G]

Tagger,

Can't say I really blame you. People without it can be very insensitive. It can be your little secret.

[blackpacer]

Hey folks (better late then never to respond). The link I viewed allergy info was at

www.calgaryallergy.ca

Basically, any searches on internet will tell you about oral allergy if you are lets say allergic to Grass, you may also be allergic to oranges. It has to do with similar protein makeup of these things. I am no doctor of course, but it is something to be aware of. Last year in the newspaper I saw an article that mentioned chamomile, avoid if you have ragweed allergy as it may worsen it. Now I was always allergic to molds but and could eat foods with yeasts/molds no problem. But obviously I had a huge autoimmune moment and now its a no go. If you have confirmed mold allergies, then I suggest searching the internet for yeast-free diet info. There is also a new fad of avoiding yeast in foods, I am not recommending any of that idealogy, but if you have confirmed allergies it is something to be aware of. If you read labels you will notice most foods containing wheat, also contain yeast. Also most processed foods, either as they use yeast based vitamins to enrich the flour or as a preservative. For myself through trial and error I figured it out. They do have gluten free and yeast free vitamin supplements. I use a brand in Canada here, that says so on the label for my ferrous gluconate (iron). Honestly the best advise would be consult an allergist or nutrionist. Hope this helps, I haven't been viewing the board lately.

[ms-sillyak-screwed]

Grieving the loss of my sweet handicape Auntie and a wonderful life I once had. Toxic food more then just celiac disease has me many times overwhelmed.

I too also am in denial. I just turn my head and pretend it doesn't bother me.

I can never eat BIRTHDAY or WEDDING CAKE!

Does that mean no new hubby and or birthdays to celebrate?

No more Dunkin Donuts French Crellers.

I can cook for myself, I'm really okay with it. I love to cook... however eating out (unless at Outback or a top end steak house) is otherwise far off in my memory bank.

Popcorn? Nope... Seizure-for-sure.

Travel -- Ha!

I miss my health...when I felt great and life was good...

So, I grieve the loss of everything I use to enjoy... Open Original Shared Link.

[pokerprincess]

Last night I went grocery shopping. I have only been diagnosed for four weeks but I have been diligent in researching and reading every book written on celiac disease. I have tried to be optimistic and upbeat about the "challenge" of learning to live with a whole new lifestyle. But as I was going from aisle to aisle I found myself growing sadder and sadder. Not a conscious thing but just growing quiet and sad.

I picked up the Jan 17th Woman's Day magazine to find the article about celiac disease and when I got home I nearly fell out of my chair when I read what the woman said about grieving for her old way of eating. I realized that is exactly what I was dealing with.

I am honestly trying to embrace this new way of living and looking at it as saving my life and not a curse but I have to admit that at the same time I am grieving over not stopping at a fast food place for a quick burger or ordering pizza cause I am too busy and everyone is hungry. All of the conveniences and good tastes that I took for granted. I often say that rice flour and bean flours are an acquired taste and I am trying hard to acquire it!! :-)

Has anyone else experienced this? If so, how long do you think it takes to adjust and let go of what is gone? I appreciate all the information and support that I get from this forum. Thank you and God bless you!!

Suzn,

I know exactly how you feel. I was an avid runner. How could i run without my pre-race pasta ritual? It was such a way of life for me that right before I started getting sick I had decided master the art of bread making! I can say you will get past this period; I don't mean to sound pretentious but you actually kind of look down at the rest of the civilized world for being so ignorant about what they trash their bodies with.

I have learned to love this diet. I love that I can eat with no guilt, I love that I feel wonderful afterwards, I love the way my skin looks and feels, and, last but not least, I love not being sick! I feel better at 35 than I did when I was 16. In my opinion, we are ahead of what the rest of the world is slowly and surely realizing.

I have people ask me all of the time to help them with their diets, weight loss and health issues.

Suzn, it is a blessing in disguise and you will soon learn to love it. You will discover a whole new world of food in differnt culturs. You will find that you have more to choose from than you ever have. It may not be in you general grocery store but just get out and explore ~!

[ryebaby0]

Obviously your grief reaction is very very normal. I agree that it will not be a finite journey, but something that is likely to subside and renew for particular occasions. It was probably 4 or 5 months after my son was diagnosed that I could even venture into the cracker aisle, and about 9 before I let him into the store at all. I can't imagine what it would be like for an adult.

When my son was little, he loved oyster crackers -- his idea of heaven was a box to himself. When I finally did pronounce myself "okay with it" and and walked into the Gluten Aisle of Doom (to get my other son some food) , I got to the oyster crackers and promptly burst into tears. I mean, crying like I'd been injured. Lady next to me went and got a clerk, who got a handful of tissues from another friendly lady. They were all very nice, and I was too sad to even be embarassed.

Which is just a way of saying, it's okay to be sad, and that doesn't mean you won't live happily with the dx and diet. Our motto is that everyone has something to deal with -- why not us, too.

Safe travel. Keep your chin up, and carry a hankie!

Joanna

[CaliGirl]

I went through all the phases of grief when I realized I couldn't eat wheat anymore. Denail, anger, sadness, acceptence, and then repeat. I've been gluten free for about a year and half now. And now, at this stage in my life, I miss wheat the way I would imagine drug addict misses crack. It's really good and it makes life so much easier and everyone else does it... but there are faster ways to kill yourself. I'm just so thankful that I was shown how to be healthy, and take charge of my health. Please take this with a grain of salt, and realize that my attitude could completely change tomorrow morning, but the fact is that we all are so much better off not eating wheat. Emotionally it can be hard, but physically, it's the best thing to ever happen to you, next to being born.

Okay, I'm done now.

[Claire]

Hi I thought I was celiac but for me its a severe allergy to gluten and yeast.

Took me 9 months to see a GI specialist and by the time he did testing

and biopsy I was gluten-free for easily more than 6 months. Anyways

they think I developed an autoimmune response to wheat. I enjoyed

reading the grieving posts, I used to consume tons of cookies, cakes you

name it...being thin I never dieted in my life. At times I panic as my

gluten-free diet is so restrictive, but the trick I use is to remember when

I was my sickest. When I had this horrible rash all over (for months on

end), the pain, the GI troubles even gastro reflux and weight loss. I have

gained back almost 10 lbs, no GI troubles and the rash is almost gone. I

thought I was dying and no one could figure it out. That snaps me back

as I remind myself how bad it was. I have continually the odd time retried

eating gluten as it was a nightmare I couldn't believe it. Each time I got

sick, very very ill. Celiac or not I may never no as the testing came a year after being gluten-free but I still grieve constantly then try and just think of the rash. I can

finally wear pantyhose s first in a year. No slice of chocolate cake is worth another year of

the rash for me. This is my first post, hope its helpful.

gluten-free and no yeast is really hard when it comes to bread. Tonight my daughter brought me Kinnikinnick's Yeast Free, gluten-free bread. I was pleasantly surprised. Good texture - actually tastes like bread. This is a good thing, as Martha would say. Claire

[frustratedneicey]

Sorry, I haven't been on here for a few days, and I don't know if I will be any real help to you,but to let you know that I have been going through the same grieving process. I was diagnosed in 2/05 and am riding a roller coaster of emotions. I think the grocery store trips have been the hardest for me. I have found that if I go alone, it is much better. (Plus, my boyfriend said he will not go shopping with me anymore) It had gotten to the point where I would absolutely throw a tantrum like a child. One day, he asked his son what he wanted for dinner, and he said macaroni and cheese, he picked it up and I threw a fit!! The only thing that went through my head is " why do these people insist on me standing infront of the stove and cooking something, smelling the aroma of something I can't eat??" That makes me very angry! Sometimes I just wish that everyone would understand...

And then at Thanksgiving, everyone on his side of the family got bent when I told them I would not be joining the women to make Christmas cookies this year. I was told I am making myself an outsider. I really don't think that people understand the whole emotional aspect of this condition.

What makes me most angry is that I do buy gluten containing foods for the household (snacks, poptarts, pizza,cereals,etc) but I prefer not to have to cook gluten foods for dinner. That has started a few fights too. The way I see it, the kids can eat gluten for breakfast, gluten for lunch at school, as well as my boyfriend when he is working, and his son can eat gluten at his mothers house all week,so why am I expected to cook foods that I will not be able to enjoy??? I don't think that is right, and I think it is mean especially when I am having an emotionally hard time with this diet..

In my case, it has been hardest because I am ill with other health problems, am not working, and I am on a very fixed budget. There really are some good gluten free foods I have tried, but they are so expensive.

The only real word of advice I can give you is just think of your health, and not wanting to feel sick again.

That works for me when I am craving something I shouldn't have.

And like I said, do it for yourself and your health, because there are not a whole lot of people in our lives who really understand the whole scheme of things. It's not that they don't care, it's that they're just not living it themselves. It's quite easy to think about yourself and no one else, and sometimes we have to turn around and do the same!!

[ms-sillyak-screwed]

frustratedneicey --

Do like I do. Go on PROTEST. I protest those peope, friend and family. When I was married to my last hubby, before Celiac. I would make gourmet meals, he would pour vinagar all over it. So, I went on protest and [wouldn't cook] at all. Try it. It's [your kitchen], remember, you are the [boss]. Don't let them muscle, guilt or shame you about celiac disease. It's not in your head, you aren't crazy. They are for being so selfish.

I feel the same way 5 years Gluten & Dairy free -- whole emotional aspect is drepressing! I cry plenty... you are right it is riding a roller coaster of emotions. Everyday I say, "Oh -- here we go again!" I can't eat most of what you all eat, my food allergies are to more then gluten and dairy. But I think I'm going to have buttons made up for us... That say about food killing us, or something more clever. Any ideas?

I still think Kaiti had the right idea about sprinkling Comet or AJAX on her food that friends would offer to prove her point. I think it was Kaiti get her to tell you the story.

[jerseyangel]

I feel somewhat different. I grieve the loss of so much of the last 20 years. Don't get me wrong--I have a nice life, great husband and 2 wonderful sons who have grown up to be men I'm proud of. The thing is that most all holidays, weddings, trips--anything that should have been a fun memory is marred by my being either too sick and embarassed to enjoy myself, or not gong at all for fear of the same. As the years went on, I hid the fact that I didn't feel well (again) as I had the feeling people thought I was overly sensitive or it was all in my head. After all, if I kept going to the Dr., why didn't I feel better? I was sick of the questions and the constant opinions as to what was wrong--so I withdrew. Not conciously, but little by little until it became the norm. It was easier that way. I don't mourn the loss of any food--I'd have gladly given them up years ago if I had known. It was good to get that off my chest--thanks for always being there to listen . I'm going to make up for lost time!

[Idahogirl]

It comes and goes for me. My wedding cake topper was in my parents' freezer 500 miles away, so Thanksgiving was the first time since our 1st anniversary that we were able to get it out. Everyone around me had a piece of my wedding cake topper (it was really dry, they said, but still looked good). That was kind of depressing.

The hardest thing for me is the expense. I bought gluten-free lasagna noodles last night for $3.79, normal ones would be around a dollar or so. I have always been frugal and a sale shopper, so it is hard for me to have to buy brand names and specialty foods.

Also, I realized at Thanksgiving time how difficult it is to be far away from home with the gluten-free diet. Everyone would wonder why I was reading labels, then I would have to explain it to them. And a lot of people just make their food and throw the container away. I felt like I spent more time talking about myself than actually enjoying myself. My natural instinct is to just go with the flow and not draw attention to myself, but then I wouldn't be able to eat anything! I kept thinking "my husband must be thinking "there she is talking about her needs again"

My husband and I were at a marriage conference and we forgot to bring a lunch, so we tried to find a buffet, thinking there would be lots of options for me. We found what we thought was a regular buffet, only to find out it was a Chinese food buffet. I just walked from one food line to the next with tears in my eyes, there was almost nothing I could have. It was embarrassing, I just broke down in tears, with a dressing-less salad, some fruit and hard-boiled egg on my plate. My husband had an egg roll, sweet and sour pork, and fried rice. I decided I will never go to a buffet again.

[Nancym]

I could write my own book on grieving for food. I have made so many dietary changes in the last 3 years and given up so many, many foods I loved. I first adopted low-carb way of eating to lose weight, eventually I realized my dietary changes need to be permanent. Then I figured out that gluten was hurting me. That meant all my low-carb baking methods had to go (gluten is protein and is used a lot in low carb baking).

But the way I handle dietary changes now (I feel like I'm a pro at this!) is to focus on what I CAN HAVE. If I have to give up something I love, I find something I can eat to replace it that I love just as much. Doing this a couple of times now I have discovered that my eating habits are not cast in cement. I can change them and found that I have a lot more control and power over my eating than I ever have.

I did mourn my high carb foods for awhile. My "diet" now allows me occassional excursions into high carb eating, so I had rediscovered breads and wheat based things. So when I decided to go gluten-free, I had to give it up all over again!

Now that it has been awhile, I look at those items as poison. I associate them with sitting on the toilet many times a day in excruciating pain, stuffing myself silly (I was totally addicted to wheat, couldn't stop eating it once I started). Its a blessing really to have this food group removed from temptation entirely.

Good luck! I can so relate.

[Nadtorious]

I used to get SOOOOOO depressed every time I realized some food I really liked was making me sick. Still do. I'll try a new food and be hopeful I won't react to it, then be super depressed (on top of being glutened) when I realize I can't have it. It's a vicious cycle. It's gotten better-I do a lot of cooking completely from scratch, and it's pretty satisfying when you can look at something like a pie or a cookie and know where every ingredient came from.

I still grieve sometimes. A new Whole Foods opened up last week by my house and my boyfriend and I decided to go check it out. Normally I can walk through a grocery store and shrug off all the nasty processed food I can't eat without a problem, but holy cow was Whole Foods difficult! EVERYTHING looked good-I nearly forgot I was a celiac and kept reaching for free samples (hello, I've been diagnosed for nearly 3 years now! I never forget!). It was so overwhelming, I had to leave!

I'm glad I'm not the only one who went through this. It'll get better, but I don't think we'll ever really get over it. Every time I think I am, something like that Whole Foods trip will happen and I'll realize that dealing with my diagnosis is still an issue.

Good luck

[cmom]

I think pizza was the hardest for me to give up. But I buy the Amy's Rice Crust Pizza and put additional cheese, pepperoni, onion, spices, etc. on it and it helps the craving. This time of year is also difficult with all the gluten-filled foods that are around every corner.

[Claire]

I think pizza was the hardest for me to give up. But I buy the Amy's Rice Crust Pizza and put additional cheese, pepperoni, onion, spices, etc. on it and it helps the craving. This time of year is also difficult with all the gluten-filled foods that are around every corner.

Check this forum for the Rice Pizza recipe that I have posted. It is very, very good. Claire

[jknnej]

I know it is hard to change your life but I think we need to put things into perspective. Although what we're going through it not easy, try to think of how trite changing your diet is compared to children in the hospital who have cancer, or people like my close friend, whose son just passed away.

There are plenty of great gluten-free foods for us. Of course we can have birthday cake. Just make your own gluten-free birthday cake. We can still eat out, we can still have all kinds of sweets, and life isn't ending.

I guess because of the death of a close friend I am feeling a little unsympathetic toward grieving for food. Right now for me there are many more important issues I"m thinking about, like my friend being totally alone without her son.

I hope I don't seem too apathetic; but come on, people, let's learn to be appreciative of what we do have and not mourn for something like food.

Know what I did to make me feel better? I went out and bought gifts for needy children for the Salvation Army Christmas Angel program. I guarantee that will make you feel better than any bowl of pasta ever could.

[frustratedneicey]

I think that was being very apathetic. I am sorry for your loss. But some of us are greiving more than the loss of food. Some of us have lost many things, not only due to celiac. Some of us have other health issues that have caused us to lose a great job, material things, and yes, family members too. It may not be to death, but in the depths of depression, it can feel like it.

It is fine if you have the money to give to others and that makes you feel good, but some of us are just trying to come up with a way to get our own children presents this Christmas.

It it easy for people to sit back and say, well if you do this and do that it will make it all better. Well, I think we have to be more sympathetic to what others are going through. What may be a quick fix for some, may not work for others. Everyone is different and deals with things in a different way. I can't make myself feel better by helping someone else when I can barely help myself.

Everyone on this forums situation is different, I think that needs to be recognized before we make comments.

[jknnej]

You may have read my post wrong. I wasn't talking about losing jobs, or having serious health problems. I was talking stricly about food, period. Of course losing a job or having a serious health problem is something to be upset or depressed about and something to need support for, but that is not what I was referring to. I was referring stricly to missing food. Please don't read things into my posts that aren't there. It is obvious that you are quite sensitive and I can see that and understand that and be sympathetic to that but don't put words in my mouth because of it.

I was also not suggesting a quick fix for anything related to Celiac Disease other than missing food. There is no quick fix for a health issue or financial issue or anything serious. But walking by the donuts in a food store and getting upset is what I'm talking about. Those cravings and thoughts can be easily distracted and THAT is all that I meant.

[Rusla]

I know many will say you should not grieve over food and there are other things more important to grieve over. The thing is who are we to say who, how, what and why a person grieves. Each person has to handle things in their own way and do the best we can. It depends a lot on the frame of mind of the person grieving whatever they are grieving at that time and what is important to them right at that moment.

I have no rights to tell another what is important to grieve over and what is not. Because I have not especially grieved over my old eating ways, I know I will miss certain things I love in Chineese food, samosas or some other things like cheese cake. However, I have personally dealt with the facts of my feeling better and looking for a new way to make cheese cake with a gluten-free crust. Or pershaps rice noodles or finding a way to make samosa's out of gluten-free stuff. That is my way of grieving the change.

If you grieve your previous way of eating then that is what you must do so you can move on. In life people grieve the loss of everything, just in different ways and some ways more noticable than others. No one can tell you that your grief is not justified or real because it is to you.

[jknnej]

I never told anyone how they should grieve; I simply stated my opinion. I personally think it is trite to worry that you can't have a muffin when there are so many other problems in life, such as serious illness, financial issues, personal issues, etc. That's just my opinion. You're right; everyone looks at things differently. This is just the way I look at things. I'm not saying it's any better or any worse than how someone else deals with it. I was just showing the other side of the picture.

If someone wants to feel sorry for themselves about not being able to eat gluten, that's OK. But I'm not going to waste my time with that because I prefer to focus on productive things. When I stopped eating wheat a year ago it was hard, but I tried to focus on happy thoughts instead of what I couldn't eat. That's all I'm saying. You don't have to agree; it's just my opinion.