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About frustratedneicey

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    36 year old divorced mother of 3<br />Diagnosed with Celiac March 2005<br />Diagnosed with MS 2006
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    Jacobus, PA

  1. I myself get very painful pimple-like blisters on my scalp,back of my neck, upper back, and forehead when I use shampoos that contain wheat.

    They become almost like boils, but when I asked my doctor about it, he looked at me like I am nuts (what's new)

    So, I took it upon myself to stop using those shampoos. Cover girl blush gives me those blisters on my cheeks.

    My Mary Kay girl wrote the company and got a list from them of what to watch for in beauty products. I am not sure where I put it, but if anyone wears make-up, mary kay or not, it would be smart to get in touch with someone that can give you the list. I am sure you can directly email them and get the same list I did.


  2. I DEFINATELY get more sick now that I am gluten free. I would NEVER, EVER, purposely eat gluten because I know how I will react. Before I knew I had Celiac Sprue, I had alot of diarrhea, and felt washed out all the time, but now, one little crumb in my peanut butter, by a kid who can't read my name on the lid, and BAM, I get horrible, horrible stomach cramps that hycosamine can't even touch. I vomit very violently along with diarrhea. I would not wish that feeling on anyone (except maybe the one who left their crumb in my peanut butter....kidding). I just said to my doctor last week that I would rather be eating whatever I want than sticking so strictly to this diet and still paying for it,,,,even worse. (except for the cancer thing) It's just that at the time it happens I wish that I would just pick up a Pizza Hut pan pizza and have a treat. I am sick anyway, might as well enjoy it....but I don't, because I know I will want more.


  3. I'm going to guess that I'm the one who hurt your feelings on the "cook from scratch and get over it" front, because what you describe sounds like my sort of response. I apologize for hurting your feelings, but it brings me to the advice to newbies to realize that the written word is woefully inadequate for getting across the full meaning of something. There's no way to convey the intonation, body language, and nuance that is a part of our normal conversation, so - instead - assumptions are made about those things, and sometimes the assumptions are wrong.

    So, again, frustratedneicey, I apologize if my advice to simpilfy by cooking from scratch to avoid cross contamination in manufactured foods and that in the grand scheme of things, after getting past the learning curve and having had time and practice with it, the dietary change will become relatively easy was not what you wanted to hear or failed to come across in the way I had intended it. I hope you have found the advice you are looking for, and have been able to seen positive change since you've gotten your diagnosis and are seeing improvement these days.

    Tiffany, It was not you who made those comments. I recognize your name and know for a fact it was not you. I am not sure what the lady's name was, but I know it was not you.


    I am so sorry you got hurt. I hope you will find that most people on here are caring and loving. How are you doing now? Are you feeling better?

    Thank you for asking. As far as Celiac is concerned, I am doing very well. A few cross-contaminations here and there, but I recently had a endoscopy for gastritis and while they were down there they biopsied my small intestine and said every looked good. No flattened villis. As for the other thing, (MS), summer is not a good time of year. The heat reaks havok on my symptoms.

    Thanks again.


  4. im off again, i feel like im continually glutend :angry: im tried all the time, i tried to go out for a run 3 days ago and had to get my hubby to pick me up and i feel like i still havent recoverd :( its my belly that is the worst i cant fit in to any of my trousers <_< to be honest the depression has started to set in and im desperatly trying not to give in to the antidepressants as they make me feel slow. im thinking i may have another food allergy that im not picking up yet, i know im dairy intolerant and am carefull about it. would another allergy have the same symptoms as being glutend :unsure:

    I am not a doctor, but I am sure that many food allergies carry the same effects.In fact, I am going go back to my allergist to finish off my testing because I am sure that I am allergic to some other foods. There are times when I am 100% certain that I have not been glutened, yet I get the same or close to the same reactions. My advice is to look into it further.

  5. Hi. I have not been on here on a regular basis, but I want to say a few things.

    I want to thank all who have been supportive and helpful and sympathetic. I have had good experiences on this board for the most part.

    I also want to welcome all new members and say that please don't be discouraged if you get one poster who is not so supportive. This happened to me when I first became a member and it discouraged me and I wasn't sure if I would return to the site.

    When I first began this lifestyle, I was having HUGE coping issues. So, I entered into this message board about coping with Celiac Disease. Everybody was helpful and supportive, exept one person. She was very condescending and rude and basically made me feel like less of a person because I was having a hard time coping. ONe of the things she told me was that I needed to learn how to cook real meals from scratch. Well, I do when I am able. Because I also have MS, my fatigue sometimes prevents this. She also tried to make me feel guilty because "so many people have it worse than I do and I should be ashamed that I am acting like this about something as trivial as a diet change".

    I was not going to come on here again and then I thought "Hey, there is a reason why this is called "Coping". Obviously, it is here for a reason. Since then, I have been a little reserved about posting anything. I have noticed that this particular lady has not been on any posts that I have read recently, so I feel safer giving my thoughts and input.

    If this particular lady is still on here and reads this, I would like to tell you that you are no help to anyone who needs some guidance, you only discourage people, and maybe you should avoid this board.

    But anyway, (sorry for whining), I want to let you new people know that this is a wonderful board, and everyone else is sympathetic to your trials and feelings and that you should continue to voice your questions, concerns, and feelings.

    Thanks again to all who have been there for me and gave me guidance and backed me up with dealing with this lifestyle. You are all special people and it has meant so much to me.

    Thank you


  6. Denise,

    I have been living with ALS for 9 years so I know somewhat your 'pain'. I have been wheelchair bound for 6 years and do nothing for myself.

    Since goin gluten free (3 days) I am stronger and less stiff.

    Good luck to you!


    I am sorry for your illness. I have always worked in the medical field, so I know somewhat about ALS. I hope that the gluten free diet eases some of your pain. If you are feeling a difference after 3 days, I know that a few weeks will make a great difference. Good luck and God Bless.


    Gail, making an appointment with a Neurologist will help to ease your mind or they will examine you more thoroughly. I was lucky that my neurologist seemed to know more about Celiac than my gastroenterologist. Weird, huh? I think he sees alot of it because it is my understanding that alot of autoimmune diseases go hand in hand with Celiac. Good luck to you. I hope everything turns out well.


  7. What were your first symptoms of MS?

    Well, where do I begin. About 5 years ago, I had bad bouts of really debilitating fatique and weakness. There were times that I would end up in bed thinking I had the flu, and just so weak I couldn't function. A doctor told me I had "fibromyalgia" and left it at that. This happened on and off for about 3 years until it totally affected my work and my life. I came down with a really bad case of the "flu" but just dealt with it for about 2 months straight. After 2 months of feeling like this I woke up one morning and was paralyzed on one side. I thought I had a stroke so I was taken to the emergency room. The doctors there referred me to another doctor who sent me for an MRI. The MRI showed that I had 5 lesions on in the white matter of my brain. These battles with paralysis and numbness and tingling have continued on since. I suffer severe fatique daily, and have double and blurred vision. I have to take meds for leg spasms so severe that my muscles are in constant spasm and they feel like touching "wood" if you feel them. Bladder issues are also a problem. I tend to walk like I am drunk at times and have slurred speech. Summer is killer, as the heat exaccerbates all of these symptoms I have mentioned.

    Anyway, (sorry to go on and on) Those are the major symptoms that have occured. It has taken 2 years since I was first seen for my MRI for them to definitively diagnose MS. They had to rule out things such as Lupus, etc, before giving the ultimate diagnosis.

    ONe thing I can tell you for sure, after I am glutened, I get so weak that I cannot function.

    Probably more info than you wanted, but there it is........

    Hope I could shed some light.


  8. I have Multiple Sclerosis, so those kind of sensations are the norm for me. But, my neurologist told me that Celiac disease and the reaction to gluten actually causes similiar symptoms, which in my case, makes them twice as bad. But I just wanted to let you know straight from my neurologist, they are normal occurences and I hope your neurologist studies up before you go back again!!! Good luck!!


  9. Wow. What an appropriate time for me to read this topic. It has been 1 1/2 years since I have been on the gluten free diet. I have been doing so well, never purposely eating anything forbidden on purpose. I had completely lost the urge to eat anything but gluten free foods. Then, yesterday, at a family gathering, someone brought out a homemade apple pie! This pie was bigger than any pie I ever laid eyes on. (maybe that was all in my mind) But it was homemade from bottom crust to the little laces across the top. The vanilla icecream sat beside it and I just felt myself foaming at the mouth. I have never had such a strong urge to cheat. Then, I remembered how I got glutened 2 months ago at a BBQ and how my weekend was ruined and how painful it was. But I just can't shake that feeling I got yesterday, my mouth is watering right now as I think about it......(oh, and by the way, I just ate the icecream!!)

    : )


  10. HI Everyone,

    I haven't been on here for a while. I had been feeling better, and I thought that I was finally coping with my diet. (also been very busy with school) But, since I went to the store last night, I have been pretty ticked off. It seems that my local Weis Markets had decided to start putting wheat starch in the cereals I have been eating for months....what is wheat starch doing in plain, puffed rice cereal?????? Not only that cereal but quite a few more, along with Malt-o-meal doing the same!!!!! Does anyone know what is going on with this.. I just read in the paper about more consumption of diversified grains because of the "growing awareness" of Celiac disease and other conditions and then these companies turn around and do this!!! Just when I was getting used to shopping at the regular grocery store and avoiding high health food store prices they do this crap!!! All I can say is that I am glad that I double checked the label. I have been eating these cereals for months thinking that they were safe. No wonder I have lost 10 pounds in the last 3 weeks with constant diarrhea with blood in it!!! I guess I've learned my lesson, I will never assume what I have always eaten to be safe!!!

    Sorry, just needed to vent!!!!!!


  11. Thank you all for your advice and comments. I had to take the hycosamine last night because I woke up at 1:30 am with terrible pain, diarrhea,and vomitting.....again. (don't know what is going on) It did absolutely nothing for me! I felt like I was having a baby. I actually woke up my daughter with my crying and moaning. And I am so sick of having to hold a bucket while sitting on the toilet. I will have to ask my doctor about phenergan. I don't understand, I don't feel nauseated until I have diarrhea, and the pain seems to travel backwards up to my belly at the same time. I thought this was behind me, I was feeling so good for a few months now, cooking new things, feeling more satisfied, and for what??? To have to go through this from time to time...oh, how disgusted I am!!


  12. Hi. My doctor prescribed Hycosamine (sp?) for severe abdominal cramps for the times I may get glutened. (happened 2 nights ago, could not bare the cramping) It hasn't happened for about 4 months, but I was reminded the other night how bad it is when it does happen. I have these pills now and I wonder has anyone else ever taken this? Does it work? Does it make the nausea worse?



  13. Hi guys,

    Been gluten-free for 10 months now. I still look about 6 months pregnant some days. It looks ridiculous because I'm quite slim.

    I avoid all the other things I've been told I have intolerances to - rice, seeds, peanuts, chocolate (well I avoid this as much as possible :), sugar (I use Stevia occasionally), alcohol. I limit my dairy - just milk in tea. I don't have any reactions or symptoms at all with dairy. Processed gluten-free food does NOT agree with me so I avoid these and all other processed foods as much as possible.

    So 10 months down the line - when the hell can I expect my stomach to calm down and stop reacting & bloating.

    Surely things should have improved by now? I'm feeling so frustrated. :angry:

    I ate a packet of gluten-free, sugar-free sweets the other night - I had terrible D for 24 hours afterwards, passed out twice, arms and legs got so sore I could hardly move them, shocking headache. Don't know if these symptoms were due to dehydration or an immune response? I think perhaps the artificial sweetners did it but most of the time I live on fruit, veg, salad and meat. I don't eat any carbs because my stomach just swells up like a balloon.

    I don't know where to turn anymore. A GI? Tried that. A Homeopath/Dietitian/Nutritionist? Tried them all.

    I'm taking all the right supplements (I hope). PLEASE can someone help?


    I would bet that it was the artificial sweetener that got to you. It does the same to me. You even have to watch sugar free gum.. Many of these foods contain sorbitol, which is a laxative. Nice.....no wonder sugar free makes you skinny, it makes everything run right through you!!!!!!


  14. I have so many bad days. I've been gluten free or dedicated to being gluten free for six weeks now. I take different things to help the healing process. I found this cocktail on the website about immunity illnesses. Anyway, he thinks I'm being crazy about taking this stuff. That this stuff could be making me feel worse. I'm taking a probiotic, colostrum, calcium, B12 and fish oil. How do I help him understand? That there's nothing wrong with taking supplements....

    Sombody give me some advise.

    Supplements are very good. The only thing I take are calcium, a multivitamin and B12, (when I remember to). But the thing is, when I forget, I know I forget, because I feel drained more than usual. I take a prescribed med for my fatigue for another illness, but it has such a strong, unnatural feeling, so much different than supplements.

    Give your boyfriend time, I am sure he will understand after some time.... mine did. Now he is my voice in restaurants and everything. For a while there, I thought he would never understand, but I had some other people in his family supporting me, and I think he realized the importance. I think sometimes it is just the way men are (sorry men) but, I think they sometimes down play things they do not understand and it can make them look uncaring when they really are not.

    Hang in there, and do what you need to do for YOU!


  15. Does depend on the Dr. I would say that if you're celiac and your child has positive bloodwork, they'll probably forgo the endo.

    On the vomiting, horrible pain, big D and all, yes. I have that, they never could figure out why or what it was. I've always had a sensitive stomach, and I throw up over nothing.

    Even as a kid, I would wake up in the middle of the night about once a month, throw up, and go back to bed. Made no sense. Since being an adult, it's about the same, but with horrific pain.

    Since I haven't been off gluten very long, I don't know if it's due to glutening or not, but it would make sense. I generally have to take phenergan (not orally :o ) when it happens. It helps a lot.

    Thank you. I just called my doctors office and left a message for him to give me a prescription for when this happens. Doesn't happen too much anymore, but ya know how people say you forget the pain of having a baby? well......I remember it well when this happens, it is absolutely unbearable.


  16. Hi Heather, I haven't been on here for awhile, but i just wanted to let you know when I read your letter, I felt like I was reading about me. I have been gluten free for a year now, and I have felt ALL of those things you do. I have had melt downs with my boyfriend and what I thought to be "inconsideration" turned out to be "just not understanding". Now this man will be my voice when we go to restaurants, and will tell them everything they need to do....and why. His son gets embarrased and then he tells him too bad if it embarrasses him, this is my life and what I need to be healthy.

    About depression, I have MS also, and Celiac was DX the same time the MS struck. I am the face of depression. I have taken 4 different meds in the last year and have NO LUCK with any of them. So I went to see a counselor, who did nothing for me. All she wanted to discuss was abuse in my past, etc, and was not helping me with my illnesses. So I went back to my family doctor and said I need a psychologist who specializes in seeing people with chronic illness. BINGO! I was sent right to someone who is the best thing to ever happen to me. We do not go in there an discuss much about my past, we focus on coping with what is now and just touch on the other things. My self esteem has been brought up to new heights it hasn't been to .....EVER! She gives me "homework" every week which is usually reading about other people and how they act and how they end up coping.

    This will help you very much, believe me.

    Also, as a teenager I used to write poetry at times, nothing real good, but just things to get my feelings out. So I sit down when I am depressed and write down my feelings. This has really helped me. I feel a sense of relief when I am done, and it changes my mood. The things that have come out of me are unbelievable, and I think when I am to the point where I am totally accepting of my life, I will have these poems published in a book for people with Chronic illness.

    See, a few months ago, I was on here crying about my life and this disease, and I still do, don't get me wrong, but that psychologist has done wonders for me, and this is something you should look into.

    There is no shame in asking for help! You need it, and it is NORMAL!!!!!

    I have every faith that your husband will come around.

    And yes, I sometimes go through a period where I run off a list of what I will eat if ever I had the chance again. Big Macs, pizza, donuts, white bread, KFC, it's all on the list. : )

    Hang in there.


  17. Hi everyone. My 17-year-old daughter is going to have a "Celiac Panel" run on her today at the lab. Do you know if a child comes up for showing they have Celiac, do they do the biopsy, or do they just recommend they start the diet?

    Also, I somehow got glutened and was up at 2 am very very sick, and in horrible pain. I will vomit when I have this intense pain. The doctor says that children with Celiac throw-up and it is unsual for adults, but I am very CLEARLY vomitting when I am glutened. Does anyone else (adult) have really violent vomitting episodes with diarrhea when they are glutened....

    Great,,, here I go again, back to another month or two of diarrhea and loud bowel sounds until I heal.

    And I STILL don't know what I ate!!!!


  18. Hi. Last week I went for a follow-up with my GI for the first time in a year since I was DX with Celiac. Last year, I thought he may be a little unsure about Celiac, but last week it was confirmed. He looked at me like I was an idiot when I told him how sensitive I am to cross-contamination,etc. He didn't understand how I could be so sensitive. What is going on here? How can doctors treat patients for something they obviously know nothing about?? Are there any good doctors (GI) in my area?? (Central,southern PA)


  19. Hi. I don't know if this will help, but I am in the process of waiting for an appeal hearing with social security as we speak. I have celiac disease, along with MS and major depression. So I got kind of a triple whammy going here. It is very hard to get SSD, and chances are at first you will get denied, but SS lawyers will take your case if they think they will win. (they only get paid if you win) So, needless to say, I had the first lawyer I contacted take my case. That was in November, and they told me it may be a whole year before I even have a hearing. I have been off of work since October of 2004.

    Also, I think everyone is different. People have different symptoms, and it affects them differently. Some people are able to go on with their lives as it were, some take years to get back to normal. I also think it depends on what job you have always done. I was always a Nursing Assistant, so this all had a BIG impact on my ability to do what I have always done.

    My best advice to you is, go to your social security office, talk to a case worker there, and they will tell you what you need to do. No harm in trying. It is not something you have to be on for the rest of your life, but you have to be disabled and unable to work for at least a year.


  20. I'm joining in with the group of angrys!! I don't think it is the disease itself that makes me so angry. Believe me, I was really sick for years. I think what makes me angry is the limited choices of food, and the cost. Yes, I could cook long meals from scratch, (and I love to cook) but I also have MS and my fatique just zaps all my energy from me. I get bored with food, and it doesn't help when everyone around you is yumming it up over the awesome pie or pizza their eating.

    I just wish there was more of out there for us. I really think that it is pretty lousy that as many people that have this disease, there is not a bigger selection.

    But most of all, I think that if we just lived in a world where people were more considerate of others around them and their needs, it would make it so much easier to bare. The support of loved ones, and even of co-workers, etc, would make this a much easier thing to deal with. I remember when my mom used to diet to lose weight, you couldn't bring one treat in the house, but where is that support when I need it? Not there. And this is way more important than some fad diet! So, as I said, I don't think having this disease makes me angry, (though my other disease does), or the diet, I think it is the "slap in the face" I get from people all the time.

  21. I am an anxiety riddled mess most days, so I know how it feels. Sometimes medicines can help, but you did mention maybe therapy. A really good therapist can work with you and teach you some great coping skills. I finally found a good one I just started seeing recently. Find someone who will work with you, that works with people who have chronic illness. As everyone knows, this is a grieving process, and good coping skills will go a long way. I only go once every two weeks, so it is not so bad. I am a divorced mother of 3, with a boyfriend and his child, and I am also ill with what they are coming closer to diagnosing as MS. I go through alot of emotional and physical turmoil to get to my appointments, but,you will find time, believe me. It's worth it!!!

  22. Jessica, The prep for this procedure is actually worse than the actual procedure. Once I got past the prep and the IV, and was wheeled into the room, I talked to my doctor for a minute, and BAM! I woke up and it was over. I have had worse trips to just go and have my blood drawn. Believe me, it is not that bad. I am pretty new to this forum, but you will find that there is alot of support here, and everyone will help you along the way with your diet and the emotional side of this whole thing. Just know that once you start this new lifestyle, the way you start feeling, will be the biggest driving force to keep you on this diet and way of life. It will be difficult, but some people handle it much better than others, and you just may be one of those people who just takes it with a grain of salt!!! I, myself, on the other hand, am one of those emotional wrecks, but you will find that sometimes the ones feeling the same way are the ones who give you the support you need.