Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


brenda07

Advanced Members
  • Content Count

    14
  • Joined

  • Last visited


  1. i have gastroparesis also they found mine with a stomach emptying test, about a year after i found out that i had celiac, i was not eating much, i had no energy, and i was never hungry, always felt full, stomach always hurt also, so they did the test and sure enough that was it, so they added that to the many other things i deal with on a daily basis, so of course they just say eat 5-6 small meals through out the day, which i find hard to do, but i'm trying, it doesn't make things easy though, good luck with everything. feel free to ask me any questions if you have any.

    Bren


  2. my gastro highly recommended juice plus and told me that they would make me feel super, the fruit and the vegetable ones, he told me and the rep both told me that they were both gluten free, after taking them both for 6months and feeling no better, probbably worse!! I stopped taking them, i guess now i know why i didnt' have any improvement while taking them, OHHHHHHHH that makes me so angry, and this is coming from someone i'm suppose to trust, things like this just make me feel so flustrated!!!! thanks for the in put on this product, glad i didn't order another 6 months of those nasty little pills!! <_<


  3. Isn't it amazing what a little support will do. I never knew how important it was to have that support from my doctors until I finally received it from my doctors this last year. It has made all the difference! Welcome!

    I just received a letter in the mail on Saturday from my dr. saying she was leaving her practice to do something called MD at home, with a list of alternate drs, I could chose from. I broke down crying, I am so upset, she has been through everything with me, she has been my dr. for 14years, she is more than a dr., i consider her a friend, she's always been there when I've needed her, plus she is my children's dr. also, i was crushed my her news, :( now i have to find someone to fill her shoes and these days that won't be easy!!!!! Just one more thing to make me be depressed! UGH!! :(:(:(


  4. Thanks for such supportive words, some days I feel like my head are just in the clouds and I just don't want to talk to anyone about anything.

    So far the only other allergy I have asked to be tested for is to see if I was lactose intolerant and that can back negative.

    My gastro Dr. seems to think I should try accupunture sure...well he's not the one who has to fork over the money for it, don't get me wrong I like the man and everything but sometimes I just wish that there was more he would do for me then besides telling me to do this and try this, which I have tried everything the man has told me to do, and really have seen no change in how I feel.

    It totally amazes me how the doctors can sit and tell you that everything is fine and you are healthy when most days you struggle just to get out of bed, but sure I'm just as healthy as a horse!!! NOT!!

    I know my body and its telling me every day something is just not right, so tomorrow I go for my labs to get tested for lymes disease, i'm keeping my fingers crossed that it comes back negative but yet in the back of my mind a positive would answer so many unanswered questions.

    I will let you know as soon as I know something.

    Thanks and have a great weekend.

    Bren


  5. I find it to be not only family members who are insensitive but my co-workers will say to me, things like "I wish I had celiac, so I couldn't eat this candy bar, then maybe I could lose some weight.' I just want to kill them. They just don't understand the struggles we go through every day. My kids are 8 an 12 and understand more about being sensitive to someones needs then they do. They watch everything I do and make sure I am eating healthy and are very careful that I do not get any cross contamination from their food. My parents I think understand what I am going through, my younger brother on the other hand who is 28 really could care less. So holidays can be tough, if only those people had to live one day in our shoes maybe then they would change their tone a little bit, I guess all we can do, is educate them as much as possible, and be heard!! :angry:


  6. Hi I know exactly how you feel i could've written that myself, even to the point that i also have two children, both my children have also been tested, both negative thankfully, like you i was dreading that my children would end up going through all that i've been through, i know just because their neg now that the could still develope it at sometime in their lives but i'll just have to pray they don't.

    Last week when i left my message i was so low i was at the point that i would have willingly starved to death then mess up again but finding this forum and peolpe replying and letting me know i wasn't alone and that other people were suffering in the same way i was helped me feel kinda normal still, if that makes sense, it made me realise and believe that what was happening to me was because of the gluten and that i wasn't losing my mind and that helped me so much.

    This week i feel so much more positive about my future and i know that if i ever mess up again that there is light at the end of the tunnel and that all those feeling and the aching and tiredness will pass and i will feel better, mind you hopefully i won't mess up anytime soon!!!

    So i know its hard and i know exactly what your going through but please don't give up it does get better, you will feel better and when useless idiots tell you they wish they were cealiacs dare them to try just one week following the diet they'll soon change their minds trust me oh and get your own back if they visit feed then only gluten free food they'll soon get the message.

    Just remember it does get better so don't give up just make sure you stick to the gfd okay

    goodluck

    hardyo,kent uk

    that's the thing when i tell people just exactly how hard it is and when they have to actually look at just how many things have wheat and gluten in them they are totally shocked by it, and then they think, I really don't know how you do it, and the thing is, is this disease may not be live threatening but it is definately life alterating for all of us, and it is a huge adjustment, and for most of us, it is something we HAVE to do to make us feel whole again, and healthy.

    yesterday i accidentally ate something with wheat in it, i thought i was safe eating hashbrowns from mcdonalds but just as soon as i ate it, i felt sick so i looked up the nutritional info. on the website and it now lists them as having wheat. I immediately knew it, my stomach was in a knot and i had to rush to the bathroom, for the rest of the day i was unable to eat, and today i feel sluggish and my head hurts, it never fails i think i am doing good and then it hits you like a ton of bricks. have a great day everyone, and safe away from that gluten!!!


  7. Welcome Brenda. Glad you are here. Keep us updated on your journey.

    thank you, i will let you know what i find out. My doctor is very supportive and has been great since the day I walked into her office over 13 years ago, whenever I bring up a new issue she is always sure to address it, without her I don't know where I would be at today. thanks for your support.


  8. I just started on this forum and I too have celiac I was diagnosed Nov. of 2004, as the years have gone on, since I was 18 years old, I have been diagnosed with, migraines, depression, H Pylori infection, slow emptying stomach, osteopenia, endometriosis at 27 and had to have a hystrectomy, interstitial cystis 3 years ago and fibromyalgia just a few months ago, I am now waiting to get tested for LYme disease on Friday from my doctor, as a young child I spent almost every weekend in Wisc. with my family and every summer, until I was 14, my dad was diagnosed with LYme disease and did alot of research on the disease and e-mailed me with some info. on it and told me that it sounded alot like the things I have been dealing with for years, so now I am going to the dr. on Friday and getting blood work drawn to see if this could possibly be part of my problems. From the list of things that could be symptoms I think I had over half of them. I know I wake up at night in so much pain that I can hardly move. At the age of 34, most days I feel like I am going on 80, I have horrible migraines, which started when I was just 12 and I take a preventative for those every day. I was lucky enough to have two beautiful children even though I had an awful case of endometriosis which cased me to have a hystrorectomy at the age of 27. So right now I try to take each day as it comes whether it be good or bad, which right now most days are more on the bad side, I am always tired and I never feel like I have gotten any sleep, each day is a battle to get through, my moods swings are awful and it is very hard some days just getting out of bed, luckily I have a wonderful man who loves me and tries his best to understand just what I am going through, even though at times, I have no idea what the hell is going on in my head or with my body. My kids are very patient and understanding too, but there are days I just want to be "normal" and healthy, I feel sometimes like I have taken away part of their childhood with being sick and it makes me sad, but my kids are here everyday to hug me and kiss me and tell me it's ok mom we love you.

    Thanks for listening, it helps knowing.. I'm not alone. :(


  9. Thanks everyone,

    Its true i don't feel so alone now, i really had started to believe i was the only person who felt like this, i mean there's loads of medical info on the symptons etc but nothing prepares you for how your going to react when you've eaten something containing gluten.

    I was starting to think i was losing my mind, or that i should start taking anti-depressants again but now i know thanks to you guys that i'm not the only person who has this reaction i think i can keep going and take each day as it comes, also not to get complacent and always check the lables!!!!!

    I'm also going to start taking vit B-12 after all i've got nothing to lose.

    Well thanks again for your advice and honesty and i wish you all good luck on the gfd.

    I too struggle with terrible mood swings, some days I feel as if I could just ring someones neck at any moment, other days I cry for no reason at all, I do take anti-depressants, but being on this diet and having people say to you, I wish I had that... so I couldn't eat this stuff, then I could lose weight, just really pisses me off!! They just don't understand the struggles we go through everyday with what we can and can't eat and if we do accidentally eat something we are not suppose too, how much it effects us. Some days I just want to curl up into a little ball and never face the world again, but then I think of my two kids and I really hate how this disease makes me feel on a day to day basis. Having to spend hours reading labels, food being so expensive for us, and no being able to be included in things that everyone takes for granted, like having a piece of pizza or a piece of birthday cake with your kids, but my kids are great about all of this and they are only 8 and 12 years old, I had my 8 year daughter tested and was so glad when the test came back negative, I truly didnt want her to have to go thru everything I have had to go thru. Having to explain to someone who doesn't have this disease how you feel or why you are feelign the way you do is just so hard and is very frustating at times, my husband is very supportive and helps me every way he knows how too, but it really helps having this forum here to have people to talk to that know exactly what i am feeling, thanks for listening to me vent.

    Bren from Illinois


  10. Ohhh man! I'm not there now but I grew up in Mt. Prospect and used to visit/spend the weekend w/ friends just outside the town McHenry.

    Good times.

    Good luck finding more for your group!!!

    I've heard recently there are celiac/gluten-free groups on facebook.

    Maybe that's another pool of potential McHenry-ers. (-ites?) :)

    I live in the Rockford area and am always looking for someone to talk too about celiac, I was first diagnosed when i was 18, and then rediagnosed at the age of 32, I am now 34 so for 2 years now I have been gluten free, it is very hard to try to explain to people what you can and can't eat, and why. At the age of 18 they didnt' know a whole lot about the disease and basically sent me home telling me not to eat bread, cereal or pasta, but at the age of 18 who wants to hear that, so I ate what I wanted when I wanted and have suffered dearly for it. So now at the age of 34, I am trying to recover from the years of damage I have done to my body. I have been diagnosed with H Pylori, osteopenia, fibromylagia, endometriosis, migraines, depression, celiac sprue, and i'm sure i'm forgetting something, and I am waiting for tests results from Lyme disease test. Having a website like this to read and learn from other people sure helps to make u not feel so alone. Thanks for listening and if anyone is in the area, let me know...

    Bren ;)