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About Carolann444

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  • Birthday November 12

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  1. That's good that they work with you like that. I guess I just need to work that out where I am at.
  2. Anyone else have trouble with work because of symptoms with celiac? I have had a bad week of getting gluten by accident and I have been so tired all week. I just started working full-time about 6 months ago and it seems like it is taking a lot out of me. I was working 30 hours a week and went to 40 hours now. I'm coming home at 6 pm and taking naps. Anyone else having this to deal with?
  3. That's very helpful especially for those of us in the beginning stages!  I have had a bad week of accidents so I am going to get more strict!  Thanks for the information.
  4. I have those symptoms also, ataxia, double vision, dizzy, confused, can't think, drop things, etc. I guess I should call my doctor and find out exactly what they tested. But my allergist told me that both the antibodies were highly elevated and I tested positive in both areas. So I guess I should find out what that means! He diagnosed me as celiac and said there is no doubt. I am gluten free now and the only time I have those neurological symptoms is usually 30 mins after I have eaten and I can track what went wrong and how I was accidently glutenized!
  5. Yes, I can relate to all of that! Ataxia fully describes what I go through. I can't walk or move my arms without an extreme amount of concentration. I'm dizzy, foggy headed, can't think straight and get confused. Alot of times a reaction starts with tingling, either feet and legs or lips and face. Then I notice I am dropping things and running into things. Then it progresses to where I can't walk. I have slurred speech and it is difficul,t if I can get anything out, for anyone to understand me. Then my vision, my eyes cross sometimes so bad that it hurts. My husband says he can always tell when I start having a reaction from my eyes. They look "freaky" as he calls it and they dilate. Once the reaction is full blown, all I can do is lay down and wait for it to pass. Usually I can start to somewhat function after a couple of hours but the full effects can last for a few days. I must be a very sensitive celiac because if I eat out and they don't cook it separately, different utensils, etc, then I will have a reaction. Anyone else have that many symptoms? I didn't used to get the neurological symptoms until about 1 1/2 years ago, (I have been sick for the past 6 years and just recently got diagnosed with celiac) and they did all kinds of testing in the hospital to make sure everything was okay neurological and it was. I also get bad abdominal pains. I have all of these same reactions when I eat dairy too, so I am now gluten and dairy free.
  6. Is there anyone here who has neurological symptoms when eating gluten?
  7. Oh wow, I have had similiar things happen to me. I was afraid to eat for awhile and lost weight and my doctor really got onto me about it! I think that snapped me out of it some but I still think food is evil lol. I had wondered if anyone else goes through this too. I really need to be able to talk with others with celiac since no one around me seems to understand the severity of it. And it seems I explain over and over and people don't get it. I don't blame them though since I didn't understand it when I first learned about it. I told someone the other day, you don't know what its like to go to a restaurant and see people pick up a menu and order whatever they want! I know its healthier but it does make me feel like a freak or something.
  8. I know how you are feeling. I have been on the diet again now for a few months. After being told I don't have celiac to now finding a good doctor who has diagnosed me with celiac. I feel great when I am on the diet. But it gets old when people bring food into work, or everyone wants to go out to eat, or you go to a wedding and there is everything you can't eat, etc, etc. I feel like I don't want to do anything either because I have very severe reactions and I can't afford, not like any of us can, a mistake with food. It is difficult and I guess it gets easier but sometimes I feel like I just don't know what to do and I"m not prepared.
  9. Thanks Kareng, those sites were really helpful!
  10. Thanks, Lisa, those are a huge help! I hope to make some contacts soon, is there a certain procedure that is used when doing this on a message board? I'm not that familiar with using one.
  11. Thank you, I am having so many different symptoms even since starting the gluten-free diet that I would like to find a way to talk with others to see if they are experiencing the same things, so a support goup would be great.
  12. Is there a place to find a list of groups? I am looking for something in central Florida. thanks
  13. Wow, I have had the same exact reactions and have been on the diet for a week also.
  14. Hey granolagal, I am new to all this too and had blood work done and all that was told to me was that my antibodies were highly elevated. My regular doctor's office called me and told me to go on a gluten free diet and that's all that was said from the nurse! I asked many questions but she said she wasn't able to tell me much other than that. After I read online I saw that going on the diet wouldn't help if I had an endoscopy done. Then the surgical center called and wanted $1200 before they would do the procedure since it goes towards my deductible. So I have put that off till January when I will get more money on my HSA card to pay for it but I am not sure what to do about the diet. I have done the diet for a week and feel changes already, but now I'm not sure if I will do the endoscopy or not. I do have an appointment Nov. 8th with a GI specialist, he is supposed to be the best, they say since he is head of the department. I think I will talk to him more then about what I can do. Any thoughts on this anyone? I have been having worse symptoms this year and kept going back to my regular doctor and she finally ran the celiac blood work but thought more than likely I had IBS until the celiac came back positive. Just a little history, I have been having symptoms since 5 years ago and was mis-diagnosed by another GI specialist as having IBS. So yea, I am feeling overwhelmed by all this too and not sure which direction to go.
  15. Yes I will get to the doctor about that. I have never had that happen before so I thought maybe it was a result of the diet or a symptom of celiac. I'm not sure what it was, whether it was a seizure or not but I will call my doctor tomorrow. I will see the GI specialist in November so I will see what can be done about the endoscopy. Thanks for your help!