Grieving The Old Life

[SharonF]

I think I've identified myself as going through the "five stages of grief" as it relates to my old, gluten eating ways. First there was the denial: "It won't really hurt, it's just a little bit."

Then anger: "Wheat! What a stupid thing to have an intolerance to! Bread is the staff of life!"

Then bargaining, which I suspect I'm in right now...because my doctor only gave me an 80% probability of having celiac, so part of me is clinging to that 20% hope.

I've been a little depressed, too.

But then there's acceptance. I've learned from looking through this site and this board that some of the things I was experiencing (diarrhea, dizziness, fatigue) WERE probably caused by celiac, and I'm just going to have to live with it.

[brehm48]

I understand, it's like everyday is a struggle. Things that other people take for granted like going to the drive through window of a fast food place. Or grocery shopping-it takes hours just to read all those lables. You always have to think about what your putting in your body, and what's coming out. My husband is the drive through king. So I'm always watching him eat fast food well I'm cooking some concocktion that I thought up. People are always asking what are you eating. You always have to turn down food that other people are offering you and say your not hungry or something. But look on the bright side you don't have to take some horrible medication for this, that is expensive and has terrible side effects. If you balance your diet with plenty a vegetables and substitute wheat flours with rice flour, garbanzo flour, potato flour, buckwheat flour, almond flour, among other flours. You will be a lot healthier than the average person. Plus everybody has hard things to deal with. This is just a minor set back compared to cancer and a lot of other terrible diseases. CHIN UP!

Rebecca

[tarnalberry]

On the other hand, I take for granted having fresh, tasty, healthy meals every day, and other people drool over my food instead. It _can_ be a struggle, but - with time and patience and effort - you can embrace it just like any other diet. If you moved to a foreign country with a different cuisine, you're eating habits would likely change, and this... is kinda like that. (Only you still have to smell your husband's bagel out of the toaster. That, too, gets easier, however. It's starting to smell UNpleasant to me! ;-) )

[celiac3270]

I completely agree.....it used to KILL me to see bagels or pizza...........now they actually make me feel sick just looking at them........very unpleasant......I think that's cause I now know what they've done to me.

[Guest PastorDave]

I just thought I would add one story of something I would have missed out without Celiac. We went to Dixie Stampede (Dolly Parton's show in Branson, MO) where they serve the same thing to everyone. I called ahead and asked about a gluten free option. They said they would have the vegitarian platter (ever noticed they bread EVERYTHING down south, I even saw an add for breaded olives the other day). I was down about that because I went there pre-diagnosis, and knew what everyone else was having was great food. When I got my veggie platter (I might point out that vegitarian is not my personal lifestyle) I was surpirsed. It had some wonderful veggies, steamed to perfection, and in the middle was a big bowl of melted butter to dip them in. Not healthy, but I actually enjoyed it more than the other meal. Not to mention it was a whole lot more food!

[kabowman]

I went through all the "anger" about giving up all milk and then all casien products 4-5 years ago, now the smell of cheese and sour cream nauseates me. I drank milk with EVERY meal and it was in almost everything I ate.

I have been gluten-free for 6 weeks now and I have been discovering there is a lot out there to mimic the old life style, as long as you are willing to do a little extra work. As I cook every night, I think about how my kids and husband are now much healthier than they were. They are not gluten-free, SF, PF, LF, & CF but their food is still much better than their piers or even when they go to their other parents' house. They also do not complain about our food. We have fruit and veggies on hand all the time. I can't seem keep enough on hand to keep them happy. My oldest has signs that he also may have gluten issues so this can only help.

I miss pizza but have not been able to really eat pizza for years without being horribly sick. I am, however, going to look for Foods by George since they seem to make a gluten-free, LF, CF, SF pizza crust. Very interesting...

-Kate

[Yankee]

I have been gluten free for about 6 days now and my stomach and bowels have felt fine. I have noticied that I am having a hard time sleeping at night. Is this a side effect of coming off the gluten? Is a blistery rash on your feet common with Celiacs? It too has cleared up since gluten-free.

I get tested on Sept 13th, so I won't know what I have for sure till then. I am going to go back on my gluten diet in a couple of days, as I don't want to show a negative on the test if I am in fact positive.

Any thoughts or suggestions? This site is a great thing as all your posts help to alleviate my anxieties over the possibility of having this.

Thanks so much,

Yankee

[celiac3270]

I don't know if sleep problems occur when coming off of gluten, but there is a sleep section here; it seems that sleep problems exist with celiacs, but I don't know if it's more common in celiacs than non-celiacs. I have heard of people having blistery rashes on their feet....I think there's a thread on this somewhere. Also, although you're feeling better, you should go on gluten for testing purposes....most docs. will say 2-4 months on gluten with 2 meals a day.........so you should get relatively glutened up for the test.

[kimp99]

hello everyone,

i am new to this site and to celiac disease. i was just diagnosed about a month ago and have been doing ok w/ the diet. although, i am learning that gluten/wheat is in everything!!! my doctor isn't really helpful in the matter. she basically said, "just avoid anything w/ wheat" so i thought simple enough then i started to read up on exactly what products contained wheat. Everything!! i didn't realize that what i always thought were just regular everyday issues i had are actually related to celiac. i have no energy and my skin is always itchy. what i find the most difficult is the support w/i my family. i don't think they understand exactly what celiac is or entails, so sometimes it is hard to get their support. also, i get depressed sometimes about not being able just to go out to a restaurant or enjoy the foods i once ate freely. sorry this is long! i am just relieved that there are others out there that feel the same way i do and that understand what it is i am actually going through. i guess i just needed to vent a little. thanks! kim

[celiac3270]

Hi Kim,

Welcome to the board. Here are a few links that might be helpful for starting the gluten-free diet:

Link to celiac.com forbidden ingredients list for gluten-free diet

Additional things to be aware of in maintaining a 100% gluten-free diet

Link to celiac.com site index -- a good place to find info.

I haven't been able to get my AOL working for days so I can't access my favorites and get you links to other helpful sites........I'm using internet explorer to post here, etc.........good luck and if I can get aol working, I'll try to provide a few more helpful things.

Remember that the diet isn't just wheat. It's also rye, barley, malt, and debatably oats. Additionally, these ingredients are hidden by food manufacturers under other names such as dextrin, flavors (natural and artificial), modified food starch, etc. You also need to be careful of contaimination -- making sure your gluten-free food doesn't touch regular food.....you'll need a new toaster for gluten-free bread and it would probably be a good idea to invest in a few staple cooking things: a pot, a pan, a spatula, wooden spoon, etc.........it's just too hard to get some your cooking stuff clean.......be especially careful with teflon; it is VERY difficult to get it completely clean of gluten and you'd be better off not using teflon pots, pans, etc. There is so much that I could go into, but I think you'll get a sense by reading the board. Remember there is a search feature, which can be very helpful to look for information on a particular subject. Welcome and good luck!

-celiac3270

[tarnalberry]

kimp, welcome.

I just wanted to give some reassurance that - like any other major change in our lives - this is one that, with time, you can adapt to. I sometimes find it interesting (now that I've been gluten-free for a year) that we (and I am definitely including myself in this issue) find going gluten-free to be such a change. There are cultures who hardly ever eat wheat who would think that eliminating wheat should be like us eliminating, oh, I don't know... buffalo meat!

You'll learn what you can and can't eat at restaurants, and I've found that - in those occasions - I've stopped worrying about the food, and enjoyed the company. People differ on their opinions of this one, but I still hold this opinion despite being a great lover of food. (Then again, I do enjoy cooking, and I'm a good cook, so people usually let me do the cooking at gatherings... :-) )

[Born2run2]

Hi all I'm new to this forum but just to let you know not all is lost when giving up gluten. I've had glutenfree jelly donuts, gluten free pizza and homemade gooey brownies. I just had to learn to be my own bakery. Judie