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Marlene

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  1. Well, it's official. According to my Enterolab results, I tested positive for gluten sensitivity. Also for casein (more on that later... boo - hoo). My question is regarding Antitissue Transglutaminase. My results says "You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten insensitivity." I have no idea what this means. Any ideas?

    Also, I do not have the genes for Celiac, however I have 2 of the genes for gluten sensitivity

    (HLA-DQ 3,1 Subtype 9,6). Apparently having 2 genes means you have a stronger reaction to gluten, right?

    Getting back to casein, I thought I was just lactose intolerant and was hoping this would get better once my body healed (I have been gluten free for about 12 weeks now) and am feeling pretty low that it's actually casein which is the problem. This means that I will never be able to have dairy again, right? Can't even think about that right now. Once I do start thinking about it, is there a good website to find out more about the Gluten-free Casein-free diet?

    I am looking forward to hearing what some of you experienced gluten free, extremely helpful people have to say about all this. I still feel like a newbie and am still going through the "grieving stage" regarding no gluten. I always loved my fresh baked breads, rolls, donuts, soft & chewy cookies, -- OK, I am going to stop now and try to think about all the good things I CAN eat. (Nope, not working right now.. sigh.)

    Thanks, guys!!

    Marlene

    (43 year old happily married mother of 4 between the ages of 11 and 19.

    Gluten free since July 1, 2006 after searching for answers for years.)


  2. Thanks a lot to both of you for your replies. I should have mentioned in my original post that I take digestive enzymes which contain HCL. Sometimes I wonder if I have too much HCL. I read one website on enzymes which said not to take one with HCL for a long time. As far as eating other fruit goes, apples make me really gassy and give me a sore stomach, pears make me feel sick, and sometimes bananas hit me wrong and I'm in the bathroom with D. Pretty messed up, eh? It gets really discouraging when you have to wonder every time you eat if you're going to get sick from whatever you are putting in your mouth. BTW, I also don't have a gall bladder (the specialist thought that was my problem so they took it out - AAAaargh) which really makes things worse with the whole digestive thing. I think I will try to take some Vitamin B and see if that helps my poor tongue. I am going back to see the gastro specialist on the 27th (not that he's been any help up to this point!) and I will mention it to him. He'll probably suggest some expensive meds, his solution for everything.

    Take care,

    Marlene


  3. I have a few questions and really hope someone can help me out here. First, what does a burning tongue mean? I've heard it's from Vitamin B deficiency and I've heard it's from specific food allergies. Does anyone know?

    Also, yesterday I ate an orange (my tongue began to burn) and it made me sick (gas, strong abdominal pain under my ribs), then for supper I had a chopped tomato with my rice and chicken and that didn't hit me so well either. Today I have been to the bathroom a number of times and am passing all this undigested food including the orange and tomato (sorry for the details). I am beginning to think that I can't eat anything anymore. It seems that various fruits and veggies bother me. I am also lactose intolerant and sensitive towards eggs -- what's left????

    Why do all these intolerances seem to be cropping up after going gluten free? Is it because I actually have good days now so the bad days stand out more? I am really confused. The last few days I have felt better than I have in ages (before the orange, that is), and now today I feel like I am at square one. I have been gluten free for about 10 weeks.

    Marlene


  4. I just walked into the lunch room and nuked my gluten-free df tuna noodle casserole (disappointingly bland). Somebody asked me what was in it, so I told her it was gluten-free pasta. She responded by saying her aunt just got diagnosed with celiac, and a general discussion was started about it. People asked questions, I explained.

    At the end of the conversation one of the women in the room turned to me, and in all seriousness stated "Why can't I get that? Then I could be skinny like you!"

    The things people say before they think! I had just explained how dangerous it can be not to get ALL the gluten out of my diet and how difficult and frustrating it is to try to do.

    I'm sure other folks have heard similarly ridiculous comments - please feel free to share. It's such a relief to tell people who "get it" about such things. Somehow writing it here makes it easier for me to see the humor in such comments!

    We went to a BBQ recently where an aquaintance announced that he was on the gluten free diet because he wanted to lose weight too!! I've lost about 25 pounds in the last 4 months. Then he proceeded to eat hamburgers complete with buns, salads of all kinds, and desserts. I wanted to get up and stuff his plate down his throat. The other comment that really gets to me is if people ask me "But have you been diagnosed by a doctor?" I even have a friend who has Celiac who doubts that I have it because my blood test came back negative, even though our symptoms are basically identical. How do you like that?? Marlene


  5. Hello everyone: Just wondering how does stress affect you? I started the gluten free diet about 2 months ago even though my blood test was negative. I also sent away my samples this past Monday to Enterolab. I have noticed improvement on the diet. However, last week Friday I had a super stressful day at work (got in trouble 3 times from 2 bosses for things I did not even do..) and my symptoms were horrendous on the weekend. I had horrible diahrea, basically water. Also, I get a terrible pain under my ribs on the right side. I have had this pain before and that's what prompted my specialist to take out my gall bladder (big mistake). I just find that when I get stressed, the pain is really bad. This is where my small intestines are, right? So I think the area probably gets inflamed and the diahrea is more from that than a set-back in recovery. I do get so sick and tired of trying to diagnose myself and figure out what the heck is wrong!! It would be so awesome to have a doctor who actually listened to me instead of tuning me out and saying it's just IBS. I get so depressed. Between feeling like crap, running to the bathroom (I think the whole office knows I am rectally challenged!!) and the pain under my ribs, I just want to curl up in a ball and stay in bed. I should add that I am a little more relaxed today and the pain seems to have lessened. Thanks for listening and caring and I look forward to hearing from you.

    Marlene


  6. Thanks to all of you for your responses! As far as my kids goes, I have 2 who seem to have GI symptoms. My one son is 17 and refuses to even consider the possibility that he might not be able to eat whatever he wants -- even though it would make him better. That's why I guess I was hoping for a positive dx. It might make him reconsider. I have told him that if it is Celiac he would be better off knowing and dealing with it while he is still young before it turns into some Lymphoma or intestinal cancer. My youngest is 11 and in the last few months has developed problems with gas and diahrea. Part of me wants to take her to the doctor to get checked out (it could be a parasite) but I don't want her to go through what I have with test after test. Meanwhile, I will continue with my gluten free, dairy free diet. BTW, I tried downloading the Newbie kit but it didn't work. I should try again. As far as the testing goes, I live in Ontario, Canada, so the government covers the cost of most of the testing. Thank God for that.


  7. Hello everyone:

    I have been reading most of the posts on these forums and have learned tons in the last few weeks. My story sounds the same as most peoples -- symptoms for the last 20 years including gas, bloating, diahrea, constipation, gross floating stools, pain, headaches, brain fog, tingling and numbness in my legs, lactose intolerance, depression and a few more that I can't think of right now (brain fog). My symptoms intensified about 3 years ago to the point where my life was controlled by BM's and the next bathroom visit. I went to my GP and was told it was stress, I have a nervous tummy (why don't you take the afternoon off?), and my personal favourite -- lots of people have diahrea every day. I have been going to a GI for the last 3 years and have had every test EXCEPT a small intestinal scope and biopsy (he didn't figure it was necessary). Finally he said it was my gall bladder. I was ecstatic thinking I was going to get better. Hah!! I got a lot worse and the diahrea kicked into high gear. Plus I developed this pain under and behind my ribs. I lost a lot of weight and always had a grey colour to my face. One day my boss walks in and says "I know what you have -- Celiac." I looked it up on the web and just about passed out. It describes me to a T. I called my GI and begged for a blood test. Came back negative. Now I know that this is not unusual but I did not realize it then. Meanwhile, as soon as I got the blood test done I started the diet and some of my symptoms disappeared within a few days. Others are going away slowly but surely although I still have off days. I was so ticked off with my GI for putting me through this misery all these years so i went to a different one recommended by a friend who works in Gastroenterology in a teaching hospital. I figured this guy teaches student doctors so he should know something, right? WRONG!! He told me I have IBS. I almost started crying. That is exactly what a doctor told me 18 years ago. He said there is no way I have Celiac because the blood test was negative (1gA - 3). I asked him about gluten intolerance. He said there is no such thing!! I asked him why I am doing better on the diet and he said "It might help some people a little but it's very expensive, I don't recommend it". Then he suggested putting me on some medication to which I said NO!! He did a whole slew of blood tests which i have not gotten back yet. He is testing for Celiac again which I told him would be useless because I have been on the gluten-free diet for 7 weeks. He told me it would be useless anyway because I definitely do not have Celiac (his words). So now he wants to do a CT scan. As if that is going to show anything. I don't know whether to go back to my original GI who was not as bad as this jerk and beg for an intestinal biopsy. It might be too late for that since I have been on the diet. I have the package from Enterolab sitting in my room waiting for me to have a BM at the right time:) I can't imagine bringing the whole contraption to work even though that is when I usually have to go. I think Enterolab is going to be my last hope for getting any kind of dx. Mostly I want a dx so I know if my 4 kids need to get tested for Celiac. Also, it would get certain family members off my back who think I am off my rocker. Sorry this ended up being such a long post for my first one. You guys have no idea what an encouragement it has been for me to read different posts and realize that I am not crazy after all. You have helped me more than you realize!!