Feeling Really Down
Posted 24 February 2004 - 09:37 AM
I'm sorry to hear that you are still struggling so much emotionally, but I totally understand your feelings. Back when I was wheat-free but not gluten-free, I felt this way a good portion of the time. I usually feel pretty content with life these days, but when I don't, I CAN'T just tell myself that it will get better soon! I try, but it never works. I feel physically exhausted and mentally foggy, and I remember all the other times I have felt the same way, and I get ANGRY that it is happening again in spite of my best efforts! Fortunately, these episodes are getting less frequent (now they usually just follow eating out). The only thing that works somewhat for me is reminding myself that setbacks happen in EVERY endeavor and that each one teaches me more about what it takes to be gluten-free, so it is at the very least slightly useful.
About communion, I seem to remember reading that gluten-free wafers are available somewhere or other, although the Catholic church may not officially sanction them. (Here is where I bite my tongue--HARD!--on my opinion of any establishment supposedly founded on unconditional love for ALL humankind that would turn around and demand that some of its members unquestioningly sacrifice their well-being and possibly even their very LIVES to uphold the dogmatic assertion that wheat is the "staff of life" and the ONLY vehicle through which transsubstantiation can occur! Is there any way to PROVE this claim? And come on, people--I thought suicide was a mortal sin!) I hate to be the bearer of bad tidings, but I have little doubt that you will have serious problems with depression as long as you continue to consume even a crumb of gluten-based communion host! If it were me, I would try to find a gluten-free host, and if I couldn't, I would work on accepting myself as a worthy individual even without the validation of Communion. NOTHING is worth sacrificing my physical, mental, or emotional health, and actually it is ONLY while I am strictly gluten-free that I can even perceive my value as a person! I hope my input helps you clarify your own thoughts on this matter, but only you can make the final decision as to what is best for you in this situation.
Remember that you are still learning all the intricacies of the gluten-free diet, and give yourself permission to make HONEST mistakes. Beating yourself up over them just adds to your stress level and makes healing that much harder! You will eventually reach the point where eating gluten-free really is second nature, although occasional periods of mourning for your old lifestyle are normal and inevitable occurrences. You CAN do this, and I wish you strength and peace as you journey toward true health! Good luck!
gluten-free since November 1, 2003
Posted 24 February 2004 - 10:47 AM
In Judaism, we are taught that you can break a law (ie Kosher rules, etc. ) if it is for medical reasons....A life is held as the most important, over all rules (well, almost all rules). Will your clergy allow you to bend the rules at all? Can you bring your own gluten-free communion wafers? If not, can you find another clergy who will allow you ? (sorry, I'm not that informed about the rules of the church)
I was in a deli yesterday, buying fresh bagels for my mother, and I was close to tears...the smell of the bagels made me want them so badly...but then I remembered another teaching in my faith...that we should stop before eating and pause to thank God... and I try to think of my celiac disease diagnosis as a permanant reminder that I have to pause before eating (to check ingredient labels!) instead of just mindlessly gobbling down my food.
Take each day , one at a time, and you will get through it ...and we will all support each other as best we can.
Posted 24 February 2004 - 12:00 PM
I am Lutheran and I explained to our pastor that I cannot have the bread and she completely understood and knew that some churches do have gluten-free communion wafers, however, we do not. So when I go up for communion, the pastor does not offer me bread, but I do take the juice. You are not less of a person because you cannot have the bread, it is just important that you are there.
I have been gluten-free for a bit over a year and am just now feeling pretty good each day. It took a long time for me to heal after 57 years of eating the wrong things and being diagnosed with everything but what I actually had.
Why hasn't your doctor put you on Fosamax which you take once a week if you have osteoporosis. I take this pill and it is supposed to strengthen your bones after the loss of calcium.
Posted 24 February 2004 - 12:16 PM
hang in there. it is tough. I'm 28, diagnosed when I was 2. didn't eat anything I wasn't supposed to until I became a teenager and rebelled. I started eating everything. And continued to do so until about a month ago - when I realized that all of the problems and symptoms I am having are related to my celiac. I think I had convinced myself that I had "outgrown" it - which can NEVER happen. I'm back on the strict diet for 4 days now. wow! what a difference in how i feel. still not feeling "normal", if there is such a thing, but much better. Hard to stick to the diet? you bet. but you know that. I have two wonderful little boys (3 and 4 yrs old) and a husband and I finally came to admitting the truth that my life and health is more important than eating the foods that are ruining/killing me. I went shopping at a health food store this weekend and got so frustrated that I cried all the way back home. But again, I know I have to do this and get back on the gluten free diet and stay on it - for the rest of my life. I have felt depressed alot lately, feeling sorry for myself, etc., but it could be worse. We could all have been diagnosed with a terminal disease. Diet isn't easy, but you know, life isn't easy. Hang in there. So glad to have found this website and message board. Support is the best medicine. and even so much more that people who do not have Celiac Disease, just don't understand it or what we are going through. Good luck.
Posted 24 February 2004 - 02:47 PM
wanted to ask you more about the joine pain thing. did you have it before? I ws diagnosed 6 weeks ago, and in the last 2 weeks, my joints have started to hurt. My knee pain is stopping me from being the athletic person I like to be, and now my wrists and shoulder and elbow hurt. Lame.
I went in for a bone scan today, but won't find anything out for a couple weeks. I am a (other than this whole celiace thing!) robust, healthy 23 year old. So I don't really understand the joint pain thing. Why would it come out now?
Posted 24 February 2004 - 04:54 PM
I was diagnosed in December of 2002 and I have Osteopinea.
Your focus will become one of your most important traits. This is a new life, and the mourning of the old life is an ever evolving process. I still struggle with this, although I also have other health issues. Each day is a learning process, and the closer you come to a truly gluten-free diet the better it will be for you. Try not to jump ahead of yourself, don't push your body. Yur body's organs and immune system must be really struggling right now to function. I take 2,000 mg of calcium daily to meet my body's daily intake and when that level falters, I feel it! Everybody's body is different yet all of us need a gluten-free diet for life.
I'm sending you xxxxxxxx hugs because they are the best I can do for you.
Posted 25 February 2004 - 12:17 AM
Well, I'll try to minimize my potato intake for a week and see how that goes. I find the reason I eat more is that I crave carbs so much now that I'm g.f. I also find that its one of the few things that are filling... That and rice. My rice intake has probably quadrupled since being gluten free.
Um, about being first in line for Communion to avoid the contamination... One more complication... The priest takes from the Blood before anyone else does... he has to be the first person to take it... and so the Body has to be in it. I wish it were simpler. But thank you very much for the suggestion...
It really touches me to see that people take the time to respond when someone is feeling down... I know for sure there will be more down days in the future... but knowing that this board is here is a big relief.
THANK YOU ALL
Posted 26 February 2004 - 08:41 AM
I am also a newbie, having been just diagnosed with gluten-sensitive enteropathy & have been on a gluten-free diet one day (help!), which my doctor said could be a 3-month "trial run" with a re-check of bloodwork at the end, but it seems unlikely this'll just be a temporary thing. I'm just starting to do research and learn about celiac disease and have found many of these postings to be tremendously helpful and also a big, big relief.
Right now I'm in the stage of going into the grocery or even health food store and literally having my eyes fill up with tears at the sight of all the food I'm not allowed to have. I hope that doesn't sound too silly. I keep trying to remind myself that there are people a lot worse off, who have cancer for example, and would give anything to just be on a diet that could control their symptoms. But I guess I just need a little time to adjust -- I'm in my 40s and have been eating healthily (I thought) compared to most people, for years now...but I also don't have much experience with depriving myself of certain foods and a big part of my life are foods like bread, bagels, and beer! Well, not necessarily all at the same meal.
I have two children and a husband who are being sympathetic and supportive, which is good, but they're not at the stage (yet) where they're even considering a gluten-free diet for themselves, so I have to do a lot of food prep that involves looking at, smelling, and touching things I can't eat. A real test of will power.
OK, I don't want this to be too long...but regarding the Communion problem. I'm a Roman Catholic, and I spoke to my church about the wafer issue. They've suggested that if I bring in my own supply of gluten-free hosts, the priest would be able to give me communion in the sacristy directly after the mass, or possibly during the mass when everyone else is done, and he would just bless the gluten-free hosts as he does the other ones.
I understand in your church that it's bread rather than hosts being used, but really, the priest has the power to bless whatever bread is being used and I don't think the type should really matter to your clergy if it's not affecting the supply for the entire congregation, but just for one person. I would think it's possible to work out him blessing separately whatever you need to take to avoid getting sick. You need to do a little more research about your own church's particular rules on this (maybe higher up than your own clergy) & present them with a couple of viable options.
And of course, while religious decisions are entirely personal things, if this church is not willing to accommodate you on something like this, if it were me, I'd seriously consider another church that is not so focused on small details that obscure the real purpose of receiving communion to begin with -- which is to receive Christ. Doesn't your church have a way of bringing Communion to elderly or sick people who cannot come to Mass? This is a very similar situation -- you need to receive communion in a particular way based on your health. The bottom line is, what's their final answer to you? Is it "Too bad, I guess you'll never get to receive communion ever again?" Or "We'll help you work this out?"
Anyway, I found a place that sells gluten-free hosts. Here's their info:
Ener-G Foods Inc., PO Box 84487, Seattle WA 98124-5787; 800-331-5222; 206-767-6660; fax: 206-764-3398; www.ener-g.com.
Good luck, & let us know what happens. Thanks everyone.
Posted 26 February 2004 - 04:33 PM
Well, the first thing I want to say is that you shouldn't feel silly about getting sad when you're shopping. That has happened to me a lot, and to many people on this board. There are times when I'll walk into the store and hold myself back from tears. It's a big adjustment. We've all gone through it... and sometimes we go shopping and we're ok with the whole situation, but another week we'll go and we'll feel so terrible over all the things we can't have that are jam packing the aisles and shelves. And I, just like you, have told myself that it could be worse, it could be cancer and of course what a person in that situation wouldn't give to be in our shoes. And sometimes that makes me feel better... and sometimes, even that doesn't cut it and I just feel bad. But what I'm getting at is that this diet and disease is a very big test of patience (And I'm not a patient person...), so don't feel guilty when you're in a bad mood. You have the right to be. We all do. We just have to keep at this I guess. As you can tell from the title of this post, when I wrote it, I was in a really down mood. And the last thing I wanted to hear was " it could be worse ".... because I already tell myself that a million times, and there are days when I just don't care if it could be worse. So don't feel guilty or silly when you get upset. We've all been through it and continue to go through it.
About Communion... To be fair, I haven't really asked them if I could replace the bread with my own. I'll consider doing that and hope it works out. Of course when someone is ill and can't partake of Communion, the priest brings it to him at his house or the hospital or whatever.
Take care and thanks for the reply.
Posted 14 March 2004 - 05:02 PM
I am post menopausal so that must be why I was put on the Fosomax. I am 58 years old and was just diagnosed with Celiac last in December of 2002. My doctor said after being ont he medication for a year he would send me for another bone scan to see if it is working--I sure hope so.
Posted 15 March 2004 - 11:05 AM
Posted 16 March 2004 - 07:22 AM
--Julie from Ma.
Posted 16 March 2004 - 11:17 AM
I, too, felt alone until I found this board. It is wonderful, knowing that we are not going through this alone. I don't think of it as "misery loves company", but "someone truly understands."
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25
Posted 16 March 2004 - 01:03 PM
I 100% agree with you--whenever I am feeling a little down about things and how I am feeling, I go on this site and read some of the posts. I know that celiac disease, while it is a huge life hassle, isn't exactly a death sentence, and the people on here really help to drum that into my head, which I so appreciate. I hope that you are feeling well, and continue to feel well for a very long time!
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