Thank you everyone for your posts. I especially felt supported by those who shared similar situations. I am glad that at least I am not alone. I began to think that it was only happening to me.
I have been gluten-free for 2 years and really don't crave many foods that have gluten in them at all, so it's not really that I envy free will of others. I never really liked eating that much anyway. But what bothers me is the lax attitude that others expect me to have about my own choices after they have tried the diet and cheated - on the surface, the diet seems easy, but as others have pointed out, it is much harder once you start reading and learning things on this board. It would be like me cheating on a diet that I mimicked from my friend who has diabetes and then telling my friend it was easy. Sure it is easy, because I know that any day I could stop the diet. I don't mind if people choose to go on the diet to lose weight or just because. I do get frustrated when their opinions are rudely placed onto my own personal situation.
I don't really think that I am in the stage of "poor me" anymore, but I am at the stage that I feel like everyone should just let me make my choices no matter what they may be. Just as one can make a choice to go gluten-free to lose weight, I can choose to be 150% careful to not digest any gluten so that I do not cause severe harm to my body and am not incapacitated for a month or more. For instance, I choose not to smoke but am ok with someone else smoking near me...I don't enjoy it, but do not speak a word. There are people who are adamant to never be around cigarette smoke, I have never once told them that it is no big deal to be around smoke or suggest that they expose their self to the smoke. That is their choice and I do not feel the need to question or sway their choice. I am just confused on why others feel this way.
I think if I have a chip on my shoulder about anything, it is about people who cannot just let things be.
I was just wondering if this happens to everyone, because it seems to happen to me a lot and it becomes somewhat offending.
I will be forced to discuss my gluten intolerance with someone in a situation where there is food being offered to me. The person will begin inquiring about my problem. A day later, they start buying gluten-free foods and saying that they are trying the gluten-free diet. They say they feel better and admit it might be psycho-somatic. Yet they cheat here and there. Also, they are not checking every little ingredient and calling the company and suffering from the same severe symptoms that I experience.
I get the sense from most people that they think it is easy to go gluten free and do not understand why I act like it's so frustrating. But they are cheating! And missing a lot of little things. They are going out to eat and not even recognizing cross-contamination!! And then only noticing mild side effects...because they are not gluten intolerant!
Now I agree with going gluten-free for whatever reason you choose, but I feel slightly upset (maybe I just have a chip on my shoulder) when the person is not even really totally gluten-free and missing the small little details and obstacles I come to everyday when eating. Also, they know that if they want a McDonald's cheeseburger they can just go get one. We have to live with knowing we will never have one. They know that on Valentine's Day they can go out on a date with their husband. I haven't been out on a date in years! I just don't know why I feel like everyone seems to think it's not a big deal and cannot understand why I battle with anxiety and depression over some portions of it.
Most of all, I am upset that since they do not experience severe symptoms, they do not expect it to be a big deal if I come into contact with gluten, and are not understanding when I turn down foods that only appear to be gluten free. Sorry, this is more of a vent than anything else, but I recently had this happen to me a couple of times and sort of feel exploited as if gluten-free is just some fad rather than a serious problem for some people. I even know a girl who is going on a so-called gluten-free diet so she can lose weight. She saw me drop weight drastically when I had to switch so I guess she thinks it is a good idea for her. I watched her eat a bunch of regular flour pizza the other night :/ Makes me feel like an idiot.
My friends want me to go out this weekend, and I haven't been out for over a year so I do not want to refuse it, but I feel like I might want to have a drink or two. I havent' had a drink for a really long time.
I was wondering if anyone knows anything about what liquors are safe to drink in regards to gluten. I mean obviously beer is out of the question except for the gluten-free kind, but I do not know anything about other liquors.
Has anyone found a comprehensive list of what we can and cannot drink?
I'm mainly concerned about the kitchen preparing anything they are calling "gluten-free" no matter if it is just for me or the entire wedding. The kitchen is at a restaurant that normally does not cook gluten-free dishes, therefore, cross contamination is very likely. I just hate to chance it just for that one day.
Also, it was going to cost more money, and I really hate to think of anyone making a fuss over it. I really hate attention being drawn to it in any way. I know the day is for us, but I think what would make me happy is just not eating anything prepared there, and if I'm happy, my fiance is happy. If I decided to have a gluten-free wedding, I don't know who would be happy when I got sick.
Maybe I am just really anal about it, but I don't think I would be able to sit and eat the food without being able to look at the contents of every ingredient used and monitoring the whole cooking process. I just don't trust other people handling my food basically.
Thanks though for reinforcing that the day is for us.
Thanks for the suggestions.
I am getting my Master's of Science in Counseling Psychology at the moment and have had to work with eating disorder patients in the past.
I am pretty well-educated on body dysmorphic disorder and in a way, I am glad you brought it up. I am afraid that I have it, but was interested to see if others with celiac disease were having the same thoughts. I felt that it could be a result of accidental glutenings that I may be having without really paying much notice to because they never are eliciting a digestive response; rather just presenting neurological symptoms.
I have been gluten free for a year. Now, my house is not gluten-free. I live with my fiance who on a occasion still eats gluten-containing products. He has cut down, but I was reading in an earlier post that you could be getting glutened by cast iron skillets. I could see this being the culprit of glutenings because we are pretty darn careful with anything else. Also, I am teetering on whether I am sensitive to casein or not. I do not know if casein could produce neurological symptoms or not?
Thank you so much for your advice, and yes it is sort of an embarrassing issue to discuss, but I am hopeful that this is a safe place.
I don't know if anyone is going to be able to empathize with my situation or be able to identify with it at all.
First of all, since I have become gluten-free, I have felt very depressed and seem to have low self esteem. There are many times that I feel like I am ugly and that people are disgusted by me. I have no idea why, but I have become extremely self-conscious, especially around my boyfriend. I find that I don't really get ready and dressed up like I used to because I feel ugly and no matter what I do I cannot change that.
I also experience what seem to be panic attacks in relation to it.
This may completely un-related to celiac disease, but I did notice it start to happen after going gluten-free. I feel like I was more positive and more satisfied with the way I looked.
Anyone have similar feelings?
Just an addition:
For my wedding, my fiance wants a gluten-free wedding which I feel uncomfortable with because I would be making everyone eating it, not to mention the hassle and expense.
My mom and my fiance then reply that I could have the chef make a meal just for me. But I am soooo concerned and worried about cross contamination that I told them I would rather not eat at the wedding and be able to enjoy the day rather than forcing myself to eat food that I don't want to just so everyone else thinks that I am happy. What would make me happy would be not to make a mistake and eat something that makes me sick on my wedding day. I am still even toggling on the fact that I might be casein intolerant.
Everything in life just has to be a big stress because it seems like everything in life, even happiness to some people, is based on food!! I never really even enjoyed food since I have been sick like this my entire life. I never really understood the appeal anyway I guess.
OMG! I am going through this as well. I am getting married in a year and I feel like I do not have any friends who really care about me either.
And as in your situation, my fiance and I never really go out to eat, but it seems like everyone else's life revolves around food and social eating. I get anxious every time someone says we will have to do something sometime because I know once I say that I can't or they see that I won't eat, they won't ask me to do anything ever again.
Also, same with the drinking. I guess most people do not feel like a night out would be fun unless we could drink. I, like most people on the board, feel that I have just as much fun as everyone else when I am not eating or not drinking.
I also feel like I wish others would listen to what I want rather than assuming they know what will make me feel uncomfortable or what makes them uncomfortable. I would rather sit at a restaurant and not eat than make everyone else eat a gluten free meal. My fiance insists that everyone would rather have a gluten free meal than go out to eat and me eat nothing because it makes them uncomfortable. Many people have expressed that to me. And I start to feel like they are expressing how my illness affects them negatively. It is just stress on top of stress really.
And maybe I have isolated and lost friends for that reason. But honestly, real friends would listen and understand the illness and still be there for you when you just want to stay in.
I really hope things get better for all of us. And I hope your support group is helpful!
When I was younger I never really got cramps and my period was very light.
However, I am almost a year gluten-free. And probably for the past 4 months, I have had the worst cramps of my life and the heaviest periods of my life.
I wouldn't say that it is cramps actually. I would say it is just pain or soreness in my uterine area that is just unbearable! I have to pump myself full of ibuprofen and lay in bed with a heating pad all day on the first day of my period. Honestly, I have to blow off anything I have to do that day. The Ibuprofen and heating pad, do not really cure it, but just make it slightly more bearable. Sometimes taking a warm bath or shower helps temporarily.
I have no idea why it happened or if it had anything to do with the diet. I would be interested if anyone has anything to offer to either one of us, but I just wanted to let you know that you are not alone! It is bad!!
I am directly speaking to instances where replies are actually mean. I know that doesn't happen all the time in every case everywhere and I never said that.
I don't expect this to board to be what everyone expects and wants. The point is that anyone should be able to post and everyone respect their need or statement. My point was that attacking people for their post is not the way to help anyone in any instance.
I never said that people who do not have celiac disease should not be able to post. I am saying that when someone who does not have celiac disease posts a reply that is hurtful it becomes confusing.
The one thing that I do not enjoy is being told that positive support and hugs are artificial. Like you said, you cannot expect the support to be what you need, but likewise, you cannot assume that positive words and hugs are not exactly what someone else needs. I need to stay positive in this disease. That is what is offending and that is what is being taken away so to speak - the safety to vent and reach out for support.
Just as an example, I feel like my post was attacked and picked apart immediately.
I agree. Sometimes this forum is all some of us have and being that celiac disease severely affects every aspect of your life, we need certain kinds of support. And sometimes, the only people who can understand the kind of support that we need, are the people who are experiencing the same things and are willing to discuss their techniques of adapting and dealing. It is like getting the chance to learn from the wise and the wise to pass along their knowledge in hopes that we can each have a better life or at least take away a positive experience with another person.
I used to feel like this was a safe place to post as well, because I thought most people would understand the issues surrounding the disease and realize the sensitive state we all live in. But I guess that I didn't realize that within the "coping" boards there would be so many other individuals posting who are trying to support their loved ones rather than living with the disease themselves. Not to say that there is anything wrong with trying to learn about the disease from people who are willing to disclose it on the forum - we all know that anyone can read these posts - but this forum isn't just for others to learn about our disease. While, I know it is hard for loved ones to cope with the disease as well, there are some of us that do not have much more access to information about our unique issues other than this board. I would rather not forget that the forum is created for those who have the disease otherwise, it would not be named after it. If we cannot feel safe posting here, some of us have nothing left. I feel that it is unfair that this board has to be taken away from the ones who are really suffering and reaching out for help because of rude replies.
I think that it is a conflict of interest at times when our lives, stories, and situations that we post on this board are being used in other ways rather than to reach out for help and receive it. I know that sometimes people can believe that they are helping or being supportive, but let's face it, who likes to go to a counselor or who likes to confront someone with an issue that is very important, and receive a negative reprimanding response. I feel that we are all intelligent enough to pause and think of others' perspectives. Sometimes, it seems like anyone could give us advice, like "be strong" or "hang in there", but sometimes I feel like that advice applies to any situation, but I really need some specialized advice - that is why I come to this board. To me, sometimes the disease is socially embarrassing, which is a fragile emotional state. I do not need to be put down anymore or else I would not be here on the board. I come here as a haven from it all. I'm with Ali, that I probably will not feel safe posting on here in the future. I feel like there are just differing perspectives about what the board is meant for.
This is a very common symptom for me as well. I know it is an awful feeling. First of all, if you are desperate, I would use a laxative. However, once you start using them, your body starts to be dependent on them. I know from my experience that a laxative will get things moving for about a week and then I am back to being blocked up and have to take another one. Laxatives will dehydrate you very badly and can lead to serious problems. So from experience with it myself, I have sworn them off and use them in the worst case scenario. Enemas are a little safer, however, still not the best resolution. I know that it might be necessary though, given the emergency situation. I often times find myself just wanting it relieved at the time being then neglect to find a way to prevent it.
Like some other people, I have been like this since I was three years old, and nothing seems to help. I have tried all of the things that people swear by such as apple cider or lots of vegetables and beans, even fiber supplements, which just made me painfully bloated. The one thing that I find works probably 75% of the time for me is coffee. I don't normally drink coffee but it seems like it gets things moving for me. Not always, but sometimes. I usually try it before a laxative because essentially the caffeine is acting as a stimulant, much like most laxatives. You could maybe try that. Another thing that is not the solution you are looking for at the moment for relief, but more of a preventive precaution is regulating your eating schedule. I found if I wake up and do the same thing every day - wake up the same time, eat at the same time, be active the same time - I pretty much go every time I eat. It seems to speed up metabolism and get you regular.
However, before you consider using any methods such as laxatives or enemas, I would consult your doctor. Most of these methods are rather unsafe, but necessary when the problem becomes a bigger threat. However, not to scare you, but for all of us, blockages could be a sign of a bigger problem. It is not always the case, as most of us know, but sometimes you could have a tumor in your bowel or something like that. Chances are, that you are just blocked up for reasons that remain a mystery to most of us on this forum. Also, I didn't happen to notice if you were female or not, but even if you are not, to the other females on here: hormones can affect BM's and digestive functions. So, certain times in your menstrual cycle, you my experience different patterns in your digestive regulation or disregulation - probably something that cannot be resolved.
All in all, it is possible if you let this go longer than 14 days, you are entering into a medical danger zone. 14 days is the maximum that you can let this go without consulting a doctor. I have seen many xrays and films of patients that are totally backed up to where they are having trouble breathing and the are in immediate danger. If at anytime, you start to feel nauseas, please make sure you get to the doctor. We have all been in this same situation though, I know I have. But just don't panic, you will get it fixed. Sometimes, I think all the worrying and fixated that I am doing starts to perpetuate the problem.
Hang in there!
Yeah I feel like I am putting my boyfriend out sometimes because we cannot go out to eat. He understands now how hard it is for me and is starting to accept this life. I'm glad that your wife feels better on the diet. I feel that most people would, but that is probably just an opinion. I deal more with headaches, emotional issues, and other digestion issues so it's not as much the running to the bathroom but more of the discomfort we live in that really affects my boyfriend and I. Glad to hear things are going well for you.
I think going gluten free would be a good idea if you really want to understand and help prevent future problems. I really wish my boyfriend would do the same. But you will find out that it is very difficult. Congratulations for toughing it through. It must be hard for our better halves that have to live with us.