Grieving

[Suzn14806]

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!!

[Guest shar4]

Suzn, I know how you feel. I went gluten-free on Halloween after biopsy confirmed celiac disease. I was told that the endoscopy was not good at all. I had pretty much lived on pretzels for longer than I care to admit. What made me stop in my tracks was a statistic that I found on the internet that said that people with celiac disease have a 40% higher incidence of colon cancer than non-celiac disease people.

Admitedly, I have an almost irrational fear of cancer, my mother's entire family died from cancer of one form or another, and she has had breast cancer AND ovarian cancer. But. I love carbs. I cannot say it any other way. I love them.

Since going gluten-free, I have gained about 10 pounds which aggravates me to no end, but I finally figured out that my body must be craving something, and so I have decided not to try to diet toooo much right now.

I grieve too, but I'm trying to enjoy the scavenger hunt for tasty gluten-free foods.

Anyway, I'm not sure that made any sense at all, but just remember that the board is here for you!!!

Good luck and God bless.

Sharon

[tarnalberry]

To a degree, yeah, I know what you're saying. My personal history of loss means that the answer I'd give to "how long it takes" is totally useless for ya :-) but I can say, don't forget that grieving is cyclical. Just because you go through the process once, doesn't mean that some other milestone in your life won't trigger it again. I don't know your age or family situation, but if you don't have kids yet, and have one who's not celiac disease who gets a birthday cake for his/her first birthday (ok, for the guests, really ;-) and a play toy), you may grieve again over what you cannot share with your children. (That's just one example.) But it's a loss, and, like any other loss of something that has been taken for granted, it's HARD and unexpected.

(For the carb lovers out there, a heads up if you haven't tried it - millet! Bob's Red Mill ELISA tests theirs as being gluten free, and I toasted/popped and cooked some the other night. MMMMmmm! Tasty! Kinda like brown rice, kinda like couscous, and better than both.)

[Guest shar4]

Thanks, I'll have to try the millet. i did have some millet bagels,and they were just plain nasty, so I've been experimenting with Rice, potatoe, and buckwheat flours. There is a health food store nearby where they carry all sorts of these things, but I didn't want to get a whole pantry full of stuff that was yukky. I've been seeing what ya'll like and been going from there.

thanks again

sharon

[tarnalberry]

just to note, I mean whole millet - not millet flour. cook up the grains (per instructions) just like rice.

[rsavage]

Dear Suzn, I grieve frequently for my past life. I am a grandmother and was diagnosed March 2002. It is hard when the family gets together. I want each of them to be tested but they tell me that they don't want to change their ways. I know that I can shop at a regular grocery store and be just fine. However, they see things differently. Each celebration turns into a little struggle with myself. I go prepared and don't vary the diet. However, everyone becomes uncomfortable and I feel bad for making them even think about such things. There are a whole lot of emotions tied up in food and right now I don't have time to sort them all out. We just do the best we can from day to day. I know that depression is something that is rampant among Celiacs so I just chalk a lot of it up to that. Still, I do relate. Yes, it happens over and over again but it gets easier with time. I now know why I want to live and how I can keep on doing it God willing. I have good friends and enjoy events in my family's lives. So just as anything, if you practice enough, you will get better. Lots of love, Royann

[judymann]

Hi,

I found out a year ago this month, it is a roller coaster ride at first, I also experienced sad shopping days and still do at times. if you make a list of items you need and don't peruze the pasta, cracker cookie isles it will make it alot easier,

Follow your list and get in and out as quickly as possible it makes it less depressing.

May I suggest making a list of all the things you CAN eat rather than focusing on what you can't you'll be amazed how many things are on that list!!!.

Glutensolutions.com has great foods and pastas, the shars crackers, bread sticks, cookies are awesome. When you are cooking the pasta start with cold water and a palmful of kosher salt, cook the pasta as directed and as soon as it is in the collinder draining run under cold water, you and who ever you are serving can't tell the difference, if you are craving egg noodles, which I was, glutano taggetelle, so good, I did gain weight at first, but just remember portion, moderation. Taste a little of everything. Do you have good support system?

Hope you are doing well, remember all of this is for your good health!

Judith

[Aimee]

Boy, can I relate. I have only been on this diet one week, and I feel like I'm in the beginning of a grieving process. I, too, read that article last night and immediately identified with her in her grieving process.

I woke up several times this week and thought "its all a joke right? I mean, come on, gluten? Who ever heard of such a thing! This is ridiculous!" but then I walked into my kitchen, looked all all the new gluten free items I bought, and was snapped back into reality.

I think its healthy to go through a grieving process, esp if food is a big part of your life. Food is linked to so many things to me, and its hard to seperate those thoughts... Like food=time with friends. Food=holidays. Food=family. Food=romantic evenings with hubby. Etc. I have to change that mindset, somehow... Amercians just get together over food all the time!!

I found one of the best things I did was send out a mass email to friends and family explaining Celiac and what it meant. I have received nothing but encouragement and curious questions since. I also wanted to educate more people about it. I am confident my family and firends now know the facts and will make situations re: food easier for me in the future.

You're not alone! =) Aimee

[veggf]

Suzn14806 and All,

When I read that article I was so glad that it mentioned grieving. I recommended the article to several family members so that they could get an idea of how it feels (emotionally). I often think that the emotional aspects are the hardest at times after diagnosis. I'm very glad that I am no longer sick, I feel great physically!--but I get very frustrated and miss the food and just being able to eat without having to think about it or draw attention to myself. Often, I want the ease of being able to just eat again. At other times, I want to be able to just enjoy the mystery of trying a new food without having to read and reread labels or quiz the waitperson and chef.

As time goes on it does get easier, though I agree that frustrating/grieving situations do return at times. I've found that keeping lots of things that I enjoy and can eat around help. Also many gluten-free mixes taste awesome (better then the frozen stuff). At first I tried to figure out my own recipes, yuck . But then I used mixes, yummy, and now I'm starting to bake on my own using gluten-free cookbooks and with the knowledge of gluten-free flours from the mixes. There are some things that I (Celiac) and my husband (not a Celiac) like better gluten-free--like Spritz cookies and pie crust. The support of this board and other Celiacs that I meet, really help. Hold on, it will get better.

Take Care!!

[jeremy'smom]

Hi- i read the posts and i agree, my family is all italian and i thank god every day that i married into a latin family, or else my cooking would really be difficult. i want to see if any of you have a store called trader joe's nearby, it is all over california and in a few other states, as far as i know they will be national within two years. if it weren't for that store i would have gone bankrupt / and or insane. My son and husband were diagnosed 6 months ago, and trader joe's has a huge selection of gluten free, if i supplement with an occasional trip for flours and pastas to whole foods i'm pretty much set. My family life revolves around food, really good food, too, and i know how wierd it feels to upset a family gathering, so i've taken to bringing more food than we will need, and then there is no feeling of deprivation (chocolate or otherwise)

brooke

[Guest PattyAnne]

I was diagnosed with celiac disease in May '97 and you go on a roller coaster ride of emotions frequently. You do learn to live with it and it does get somewhat easier as time goes on. But it is difficult when most of the world looks at you like you have 2 heads when you try to explain celiac disease to them. My problem is that I seem to be ultra sensitive and I get sick everytime I eat any where but my own home. Doesn't seem to matter to what lengths my familygoes to to try to keep me from being contaminated. I have given up on restaurants. No matter how understanding the staff seems to be with my plight, I get sick. I even had to give up my wonderful nursing career because I was constantly being contaminated helping my patients with there meals and I became severely anemic. I thank God for all that I do have and can do, but I'd sure like to be able to go have lunch with my friends again.

[GFdoc]

Hi - I was diagnosed in 9/03 and I definately went through a typical grieving period! When I went to the grocery store the first time I was also in tears. I was grieving for my old way of life where I could eat whenever and whatever I wanted. My neighbor, who saw me at the bus stop with my kids, told me to "get over it - at least you don't have cancer" - which I found to be SO uncaring and nasty. (yes, she is right, but that's not what I needed from her at that time). Anyway, I still have some times when I feel sad that I can't eat certain foods, but I've found other foods that are delicious, and I try to have some of those around when others in my family are eating what I miss most. I feel safe in my own home where I am in control of what I eat - and I've just recently been eating out more in restaurants - which can be challenging. The hardest part, for me, is visiting other people's homes for meals - I don't want to be a huge imposition, but I have to be incredibly detailed. I'm used to reading labels carefully, for we keep a Kosher home, so that part isn't so bad for me. I find it's good to bring your cell phone to the grocery store and call the manufacturer's 800 number right from the grocery aisle if you aren't sure about a product's ingredients.

By the way, my doctors were not particularly helpful after my diagnosis - thank God for the internet - the information I got from this site was a lifesaver. (Oh, and by the way, I am a physician myself!)

This is my first time posting to a message board! Hope it helps!

Sara

[angel-jd1]

I believe that we definately NEED a grieving process. You have to mourn your past lifestyle so you can begin the new one. You will have days when you feel like crying when you see a piece of pizza or smell a doughnut. I still have those days when it is hard. I TOTALLY avoid the bakery section of the grocery store. I hate going into those isles and smelling the good foods.

I remember right after my diagnosis. My dad was going to order a pizza for the rest of the family, and I threw a temper tantrum like a two year old. I thought it was sooo insensitive of him to even THINK of ordering pizza when I was around. I was having a major craving for pizza at the time! ha I'm sure that had something to do with it.

We just have to mourn for the things we miss, and try to find a way of making them at home with our own ingredients or finding a new substitute for your vice. We are much healthier for our diagnosis. I know some days when you see that sandwich or doughnut it is really hard to remember that though!!

Keep pushing forward and keep a positive attitude.

-Jessica

[blackpacer]

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.

[judy04]

Hi, I am also diagnosed with a wheat allergy and my test for the celiac disease gene

was negative. I am convinced that I am positive. I don't want to take the gluten

challenge to prove a point, because I NEVER WANT TO BE THAT SICK AGAIN.

I will consider having the enterolab testing later. My symptoms began after thyroid

surgery for a benign nodule in 2000. My eyes began to burn and I went from Dr. to

Dr., everyone said it was just "allergies", I was tested for everything but they said it was typically environmental issue..trees, grass, mold,ragweed. The skin test

for wheat and other foods were Neg. I even insisted that we buy a new refrigerator

because i had read that old refrig can leak and cause a lot of "allergy-like" problems. I had a series of allergy shots, antihistamines,sinus infections, lots of antibiotics which I think led to my diagnosis of IBS. In March 03 I began to have

a lot of GI problems, nausa, diarrhea, spots and burning in my eyes, lots of anxiety about driving and being around a lot of people. I never left my house

until after I had eaten and had at least one bowel movement. I was afraid to "pass"

cars on a 4 way highway because I was afraid I would have a "spell" as I came to call them. Luckily I have a very supportive husband who has been with me every

step of the way.I remember he had to practically had to carry me in the hospital

for all of the test because I was so sick at that time. All of my tests were Neg except for severe reflux. My GI doc said it was IBS triggered by fats and I was prescibed fiber and Nexium. By the time Oct rolled around I was better but still

sick with almost constant pain in my right side nausea, bad taste in my mouth, etc.

The GI doctor then suspected Celiac so I was tested, positive for wheat allergy,

but Neg for celiac disease. I started the gluten-free diet on Nov 03 and have been doing better, however milk seemed to bother me so I am lactose free, but I do seem to tolerate

goat's milk which I use occaisonally.

The only thing about this diet is the incovenience of having to plan every meal

making sure you have all of the ingredients, and the price.I made a chocolate cake the other night and I was very pleased with the taste. I thank God every day

that I am getting better every day and can go shopping alone without fear!

[seeking-wholeness]

blackpacer,

Did your doctor perform a biopsy on your rash to determine whether it was dermatitis herpetiformis? DH does last for months, and celiac disease IS an autoimmune reaction to wheat (gluten)! You may want to consider ordering a stool test from Open Original Shared Link, which MAY still come back positive even though you have been gluten-free for several months (unlike blood tests, which become negative very soon after going gluten-free). Enterolab also offers gene testing. It's wonderful that you have figured out that gluten is responsible for your troubles, but I can certainly understand wanting a concrete answer in a situation as life-altering as this! I hope this information is helpful and that you are doing well!

[blackpacer]

Judy I am so sorry you had to go through what you did, and your story is very similar to mine. Interestingly enough I was diagnosed with mold/dust/ragweed etc allergies but always was able to eat foods like bread etc. Then in Dec 2002 I saw

a specialist for suspected fibroylagia and he prescribed folic acid as I was

deficient in this. I got ill, I kept saying I am allergic to it. The md said not possible. So I stopped taking it and specialist says eats more wheat etc big

sources of folic acid...got deathly ill, itchy, reflux etc. I happened to one day

pick up a bag of flour as I even started home baking and my hand was covered in hives. I suspected wheat allergy. To make this short the doc and GI suspect

now that being very allergic to molds/yeasts and the folic acid is a B vitamin

derived from (you guessed it) molds/yeast I suffered a huge autoimmune reaction

and newly developed a wheat allergy. You cannot get anything packaged that

is not enriched with B vitamins (ie, sourced from yeasts/molds) nor can you

get unenriched flour in wheat. So now I bake daily cornflour muffins and they are my carbs. Like you stopping wheat/yeasts I don't have reflux, don't itch from

head to toe and have don't have that deathly ill feeling. Also people need to be aware that if they have certain allergies they can potentially react to foods from the same botanical food group. ie, chamoile tea is related to the plant family that ragweed is from! I found a great allergy site that talks about "oral allergy syndrome". Strangely enough now that I am off wheat my iron levels and folic acid levels are normal for the first time in a long time. Your spells might have also been anxiety attacks, when I had the reflux I also had them happen at the same time.

[judy04]

Blackpacer, thanks for the info. I knew about the chamomile tea, but hadn't heard about the B vitamin. This is a really dumb question but, if I am allergic

to mold, which I am, does that mean I am also allergic to yeast??If this is true then that explains a lot of my symptoms that I still have after being gluten-free for 2 months. Would you mind telling me where to find the site about oral allergy syndrome. I love this site because I learn something new every day..

[gf4life]

That is really interesting about the B vitamins. I have a lot of allergies. Severe for house dust and Alfalfa, minor for almost everything else on the list. I recently drank some tea, Celestial Seasonings Tension Tamer with B vitamins, and felt very sick within an hour. I know I had been gluten-free that day, so it sort of threw me off to try to figure out what made me feel bad. I don't take multi-vitamins, since they also make me feel ill. I won't take supplements unless I know that I am deficient, since they usually make me sicker. I don't ususally eat yeast breads, but a week ago I made a loaf and it made me very sick. I wonder if there is a way of knowing for sure if yeast/molds/B vitamins might be bothering me. Since trying to eliminate all of them would just make my dietary restrictions even more difficult. I already can't have gluten, dairy, or soy.

Mariann

[judy04]

I have been taking a multivitamin but i don't think i should continue.

I am so furious with my allergist for not passing on this info, I really

don't think my GI doc will be up on this. I wish I knew where to go for

help because I have so many allergies. I keep telling myself that this

too will pass, and I try to focus on getting and feeling well again. God bless the people on this board, we are all in this together..

[Christie]

I was diagnosed 3 years ago last month. It was very overwhelming at first but I went gluten-free 100% (as far as I know) immediately. I didn't grieve until probably a year later. I was so sick before my diagnosis that it really was a relief to find out what was wrong...and that I wasn't dying of cancer.

Two of my three daughters have since been diagnosed as well as my mother. I CAN'T let this get me down because my kids (16 & 20) don't want to see me struggling. I have to be a good role model for them.

However, I do admit there is one situation that always brings me to tears. The company I work for promotes 'team' lunches and holiday celebrations that usually involves food. I have to remind the people planning an event, of my dietary restrictions...EVERY TIME! 9 out of 10 times the catered meal does not include even one item that is gluten-free. Salads have croutons and/or dressing is already in the bowl. Is that discrimination in the workplace? If I was dieting as a way to lose weight okay, but I CAN'T eat a little gluten "just this one time".

Most of the time when we all go to lunch I end up having to order a plain green salad with no dressing. And of course this is always a topic of discussion at the table. Sometimes it's hard being different.

[midnightjewel40]

Hi there cristie

i have the same problem i dont work but when i go out or have lunch with people i ask for gluten free people look at you as though you have two heads and then say it wont hurt to have something huh they dont know the half of it i just wish one day they would see what it is like i have really bad days where i dont even go out and my hubby says he understands but when we are out he coments on not having the old things we used o have which gets me angry i am so down most of the time if only i say ,.......if only

jacque

[bluestar]

Grieving?!?!?!?

I celebrate! I am now 5 years post diagnosis. I finaly have answers to my lifes physical problems (or some of them at least). I guess that grieving was not part of my process because I already was an expert at maintaing a restricted diet (kosher); this just restricted it more. HOWEVER, I did grieve for the fact that I had transmited the gene/disease to 5 of my 8 children. For this I grieve and feal guilt daily. I rationalize that I am being to hard on myself, but it's tough to send my 5 year old to a pizza birthday party or my 12 year old to a bat mitzvah where she cant eat anything or my 9 year old to a bowling party where he stands out not being able to eat cake. My young ones ask me " when will we get better?", why cant I take medicine to get better like when I had strep throat. I also know the statistics of getting other diseases.... secondary to having c.d. To me these are the real issues.

What would I have done if I would have known that I had a genetic disease prior to having my beatiful children? I don't know! However, while the grieving process is perhaps part of a normal response to finding out one has c.d. it just isn't that bad!! Its no different than going on the atkins diet.... It just is more serious!

Marc

[Guest aramgard]

My responce was like Marc's. I was really joyful that someone had finally figured out what was wrong and the fix was just diet. After 50 years of rashes, unexplained, multiple allergies and then the topper, the gastrointestinal problems, I was ready for a real fix and not medication. Marc, don't beat yourself up so much. I, too, passed the gene on to my children (three girls) and possibly to my great granddaughter. But I as long as we understand our limitations, we can lead a healthy life and so can they. If we sat around worrying about what could have been we'll just be depressed, so all of us need to start putting on a smile and deal with the problems of being Celiac's and just go on with our lives with glee. After all diet is much easier to change that having to take medication for the rest of your life. Shirley

[tagger]

There are times I get feeling really sorry for myself when I'm grocery shopping, but it doesn't affect my gluten-free diet because I NEVER want to be SO SICK again! I'm normally not a very strong willed person (ie tried and failed to quit smoking infinite number of times) but I was curled up fetal position for 2 months in my bed. Life flew by me and when I finally "caught on" and went gluten-free it was such a miraculous and speedy recovery. What had happened though was that I had missed so many events (my nephews wedding, friend's get togethers etc) that I fell out of touch with a lot of people and haven't really got back to where I was. I'm getting better at reading ingredients and my family is so busy that we rarely all sit down together for a meal anyway so it's not too much "in my face".

One thing I find myself thinking a lot is..."If only I'd had that last piece of Pecan Pie BEFORE I went gluten-free. If only I'd had that last strawberry shortcake BEFORE I went gluten-free. It's hard at the cottage because my mother bakes and her pastries are out of this world! She really tries to do some gluten-free stuff for me but of course it isn't quite the same is it?

So I think we all feel a little sorry for ourselves sometimes as we walk down the aisles and try not to notice all the yummy things we can't have, but the idea of the problems that would arise if we were to "err" keeps us on track. I know the comment about cancer seemed mean, but when I think of all the things that could be worse, diabetes, yes...cancer, so many other diseases that can't be simply controlled with diet I guess passing on the gravy isn't so bad after all.....Tagger