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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Newbie,

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!

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Being diagnosed with a chronic disease that requires a major lifestyle change is very difficult. I think we all have our ups and downs. I think it is helpful to hold on to your faith...it can get you through alot.

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.

Sara

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Newbie,

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.

Linda

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Newbie:

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.

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Guest Libbyk

newbie (or anyone who knows)-

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?

peace

Libby

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I do hope that you will find the peace you need. This group is a wonderful opportunity for you and all gluten sensitive and gluten intolerant people!

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.

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Mariann, I love this site too. It always helps me out when I'm feeling down or when I have a kazillion questions! You know, I was actually surprised when you mentioned the joint pain and the potatoes/tomatoes... I haven't really had a lot of tomatoes, but potatoes a fair bit! I would have never in my life guessed that potatoes could be causing the pain... boy celiac is a tricky thing isn't it? See, I've been wondering about this joint pain but I never knew what brought it on. I just told myself "must be the osteoporosis... :P " I used to watch the osteoporosis commercials on tv and think to myself "I don't have to worry about that for a LONG time." I guess the joke was on me. Oh well. I read on the net that osteoporosis can't be cured... but my doctor also told me that he believes because I'm still young (20), I could replenish the bone loss (does that mean that I can be cured of osteoporosis?)

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

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Hi Newbie and everyone,

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.

Ellen

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Hi Ellen!

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.

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Newbie,

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.

Linda B.

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Thanks for all the replies everyone. I hope you're all doing well, and Linda, I hope the medicine is working for you.

Take care.

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Hi, my name is Julie and I am a 23-year-old with suspected celiac disease. More about my experience in Boston, Ma. with the gastroenterologist can be found in the doctor's section of this board. Wow, I can really relate to the post about feeling down and disappointed. <_< Going out to eat at restaurants are not exactly exciting--I can only eat salads most of the time, and even then, I have to be careful of the wheat stabilizers in the dressings, and then, I usually am so hungry that as soon as I come home, I pig out on my stash of gluten-free foods. It's annoying, because everything that I see in the supermarket that appears safe has wheat fillers, protein, stabilizers, or starches, but then I tell myself that those types of things are poison to my system anyway, and why would I want to ingest poison? It's a psychological game I play with myself, but still, I do very much crave gluten a lot of the time, although it has significantly faded since going on the gluten-free diet in August of 2003. Sometimes, I do get upset and break down crying, and yes, my joints do hurt at times--specifically my knees and my wrists (and as a writer, I do not really want to develop pain there), and my hip bones sometimes jut out and hurt whenever I am sleeping on my side. This message board has really helped solidify the fact that I am not alone, and that there are other people out there that care and are living with this disease as well. As corny as it sounds, I derive much of my strength from you all, and I wish you all luck in your quests for good health. :)

--Julie from Ma.

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Julie,

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." B)

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Dessa,

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! :D

--Julie

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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