This is great to hear. I have been mostly gluten free for a month now (had some CC issues a few times recently) and am not really feeling better yet. It could be bc of the CC or just that I need more time, either way I am really looking forward to feeling normal (whatever normal feels like)! It is encouraging to know that I will feel normal and good someday soon so thanks.
I am right there with you! I find myself either wanting to cry or actually crying when I think of all the wonderful food I will never be able to have again. People keep telling me that I need to just get used to it, but its just not that easy.
This past weekend, we went to my boyfriends parents house for the weekend and everytime we go visit them we always go out for breakfast at Big Boy and I can't eat there anymore so I told my boyfriend that I didn't want to go with them and that I would stay home while they go. Well, he kept trying to convince me to go anyway and just to eat before hand. Like I want to sit there and watch everyone eat super yummy pancakes, waffles (which are my fav), biscuits and gravy, ect...That is seriously like TORTURE for me and no one gets it! We went to the outback for dinner the night before and they have gluten-free menu which is GREAT but everyone else was chowin down on the onion blossom, and chili chz fries.....again TORTURE!! I want to cry just thinking about it...seriously.
I had the same problem with my dietitian when I met with her. She told me to take it slow and not jump into it, to just make sure that I stay away from gluten for the most part but if I had a little it is no big deal. This really bothered me for the simple fact that, if gluten is what is damaging my intestines and making me this ill then it IS a big deal to stay away completely not-just a little bit!
My whole though about this, is that if I am going to do it then I need to do it full force and not just half a!@ so I can feel better quicker. It makes me wonder how some of these people got degrees.
When I met with my family physician, she told me that because most doctors consider celiac disease to be so uncommon they don't really know a whole lot about the disease. She said that pretty soon I will be more of an expert on it than most doctors. After joining this site, I can see how that it very true. Everyone here is so knowledgeable and helpful. I never even thought not to use my old toaster bc of cc until I read it here and thank goodness I did!
I am still working on the whole diet thing myself and I agree the gluten free food is way too expensive so I try to avoid buying it as much as possible. For breakfast I usually have gluten free cornbread muffins that I make myself (I just use the recipe on the cornmeal container but substitute brown rice flower for regular flower and I add extra sugar), Bob's Gluten free hot cereal (which is actually very good) or a banana with peanut butter. I really don't like eggs that much and still can't have dairy so this is basically what I eat. For lunch I usually take a baked potato with veggies or left overs from dinner the night before and dinner is always a meat (usually chicken 100% natural) or fish with rice or potatoes and veggies and sometimes cornbread muffins because they are soooo good.
I have been dairy free for a month now as well but I'm not liking it too much. I love dairy. I have been trying really hard to read all labels very carefully but it can be so tricky. I told my boyfriend that I am not eating anything that doesn't say gluten free on it, but that is near impossible. I have also considered just to stop eating altogether but I know I can't do that! This is WAY harder than I had ever thought it would be. I am still trying to get all the gluten out of the house, but my son and boyfriend still eat some things that contain gluten. I keep all my food in a separate cupboard though. I have been careful as to not kiss my BF after he has had gluten and even put our dog on a gluten free diet. Should I go as far as to get all new Tupperware, pots and pans, ect? I don't want to go over board but I want to be careful. I know my doctor said it would be about 2 months before I start feeling better and I still have another month to go but I want to feel good soooo bad.
I can really relate to how you feel bc I am feeling the same way. I have been on the gluten free diet for a month now and still am not feeling better. It is very frustrating for me bc when I am sick (which is often) everyone around me keeps saying "well you didn't eat anything with gluten in it" or "shouldn't you be feeling better by now" ect... This makes me feel like they don't believe that I am really sick and that sucks. I wish SO bad that I was feeling better by now, but I am not. I feel like I am never going to feel normal again, but then again I don't really remember what it feels like to feel "normal". I am hoping to be feeling better in another month. I am trying to have faith and patients but am running low on patients.
I was just recently diagnosed with celiac disease in March. I have been on the gluten free diet for a month as of yesterday (May 1) and have been experiencing muscle spasms all over my body and I mean all over! I have also had several bouts where I get very shaky, dizzy, nauseous and feel very weak. I was previously told that I am hypoglycemic but usually if I eat something sweet when I feel like that it goes away and this doesn't go away no matter what I eat. I have to just lay down and rest and it is the worst feeling. Also, I have had this DH rash all over my body for a week now and it will not go away. Is all this normal? Is there anyway to get rid of this rash or at least soothe it somewhat? It is driving me crazy.
Thanks for your replies. I just went online to the Dept. of Labor website and it says that if the employer doubts the validity of my condition then they have the right to request a second opinion by a physician of their choice at their expense. In the meantime, they have to give me the time off that I need.
This really bothers me only bc my employer has treated me like crap since I have been with the company. I have been employed with them for over 2 yrs and have never gotten a raise, despite the ongoing compliments I get on how well I do my job. Not to mention they have me train some of the new employees! When I first went to the HR Dept about this, the HR guy was very nice and said for me not to worry about my job they will help me through this and that I need to focus on getting better. He never once gave me any info on FMLA until I mentioned it to him. I had several people tell me that I could take intermittent leave which means that I can call in on the days that I am sick and they cannot fire me bc I would be covered under FMLA. When I asked the HR guy about this he became very rude and told me that its not true, it has to be pre-planned time off and I can't just call in whenever I want to. I did some research and found that he was lying to me the whole time. According to the Dept of Labor, under the intermittent leave policy I can call in whenever I am ill as long as my doctor can verify that my condition is not foreseeable (which she already did). My doctor herself also told me that she has patients who have fmla and only use it on the days they are sick. When I brought this to HR again, he again became VERY rude and again told me that it is not true and that unless my doctor was also an attorney she basically didn't know what she is talking about, even though I showed him the papers from the dept. of labor! So this past Sat I got a certified letter from their attorneys stating that I have to get a 2nd opinion or they can fire me. Can you believe this guy! So anyway, I am just frustrated bc I know they are just doing this to be jerks and my luck will be that their doctor won't know anything about my condition. Thanks for letting me vent and for all your help. I will keep you informed of how things go in the future. Did I mention that I hate the company I work for??? Agghhhh!!!!
I am just wondering if anyone is familiar with FMLA. I have applied for FMLA at work because I have been so sick. Some days are just too bad for me to make it to work. Anyway, my employer gave me a very hard time about it and now they have had their Lawyers contact me via certified mail telling me that I have to get a 2nd opinion by a physician of their choice. First of all...is this legal? Second, I have been on a gluten free diet now for almost a month (May 1 will be a month) so any tests that they do will be a false negative bc I don't have any gluten in my system, right? Also, I don't want to have to get another biopsy just because they don't believe the 2 physicians I have already seen, it just doesn't seem right. Does anyone know about this? Have any advice?
Reading all these great things gives me hope, but I must say that it also makes me a little depressed bc I still feel like crap all the time. I have only been on the gluten free diet for almost 2 weeks so I know I have a long way to go, I just hope it will be like everyone says "you'll feel like a new person" bc then I have a lot to look forward to. Thanks for the hope guys and gals!
I just wanted to say thank you all SO much for the great advice and support. I want to give a special thanks to NoGluGirl for the great list of gluten-free products, that will be VERY helpful for me! I also wanted to give you an update. The same day I posted this when I got home from work, my boyfriend told me that he was thinking about my celiac disease and he thought it would be a good idea for us to get rid of all the gluten in the house and clean out the entire kitchen to make sure I don't get contaminated! I was so surprised, and relieved. He said he wants to get a new toaster, and tupperware too. He even bought our dog gluten free food. I am very happy that he is being more understanding now. So I guess I am off to a good start. Now I just can't wait to start feeling better. Thanks again everyone!
I am new to this so I apologize for the length.
My name is Miranda and I am 25 yrs old. I have been sick for the past 8 yrs and always told I have IBS. After yrs and yrs of this and it getting worse by the week, I finally went to a new doctor who had me get blood work done for Celiac and it was positive but even after I went to the GI specialist, he even said he thinks its just IBS! He did an upper and lower GI and after the biopsy came back positive, he still insisted that I have more blood work. The results were thru the roof (as the doctor said) normal being below 19 and mine were 150. He finally officially diagnosed me with Celiac Disease. I really just started the diet a week ago and recently found out that the chicken I was buying has gluten in it. This has been extremely hard for me bc not only am I sick all the time but I am stressed about what I can and cannot have. My boyfriend seems to be having a hard time with it too bc he keeps making crappy comments. He got upset bc we can no longer buy the chicken we used to, and then asked when I was sick the other day what was wrong and how did I feel like he doesn't believe that I'm really sick. I feel so alone in this bc no one understands how serious this is and how crappy I feel all the time.
I know this is really long but does anyone have any ideas on how to make my boyfriend and family understand this better and how I should handle those who don't?