First Time Here!

[Noel1965]

Hi everyone!! This is my first post and I am still trying to find my way around on this site. I have so many questions - where do I start. I was diagnosed with celiac disease about 9 months ago and have been glutenfree since (as far as I know). However I do not feel any better. I have read many of your posts and it appears that many of you can tell when you get gluten because you get sick. I feel the same continuously.....therefore can not tell anything from how I am feeling. Just one example is that I have not had even one day without a minumum of 5X's diarhea for over a year. What am I doing wrong? I have also read on your posts about corn etc. The doctor has not mentioned anything but NO GLUTEN! If I was going to cut out one other item from my diet to see if there is a change which would you suggest? Thanks!!!!

[CarlaB]

If I had to suggest one thing it would be dairy. I am also casein intolerant and didn't start getting better until I eliminated dairy. I have the same reaction from casein as from gluten.

I would also suggest cutting back your diet to only meat, eggs, veggies, fruit, potatoes, and rice. Once you start feeling better, then add back foods rotating them in (one at a time). Pay attention to your reactions for a few days with each new food. Soy and corn are often a problem as well.

Be sure you're eating several times a day, lots of protein and lots of rest. Your body needs energy to heal.

I would also suggest trying to find any hidden gluten .... cutting boards, wooden spoons, eating out, teflon pans, sauces, etc.

Welcome!

[jerseyangel]

Hi everyone!! This is my first post and I am still trying to find my way around on this site. I have so many questions - where do I start. I was diagnosed with celiac disease about 9 months ago and have been glutenfree since (as far as I know). However I do not feel any better. I have read many of your posts and it appears that many of you can tell when you get gluten because you get sick. I feel the same continuously.....therefore can not tell anything from how I am feeling. Just one example is that I have not had even one day without a minumum of 5X's diarhea for over a year. What am I doing wrong? I have also read on your posts about corn etc. The doctor has not mentioned anything but NO GLUTEN! If I was going to cut out one other item from my diet to see if there is a change which would you suggest? Thanks!!!!

Hi and welcome to the board!

I agree with what Carla said, so I won't repeat that advice. I wanted you to know that my doctor (GI) also said that the only thing I had to eliminate was gluten and dairy. I was fine doing that for several months, then my symptoms came back the same as before I was diagnosed.

That was when I began to eliminate other foods that I though may have become a problem. I ended up seeing an allergist who suggested I do an elimination diet. I did my own version, and found that soy, corn, tapioca, grains, coconut all cause me to react.

You may have another intolerance--If I were you, instead of picking one item to eliminate, I'd go back to a very basic diet of meat, eggs, veggies, fruits and when you feel better, add back one food at a time--about one a week.

[Guest cassidy]

You are probably still getting some gluten. Have you checked absolutely everything? All cosmetics, soaps, shampoos, lotions, making sure that there isn't a big cc risk with the foods that you are eating? Using separate pots, cutting boards, colanders if you have gluten eaters in the house? Washing your hands before you touch your mouth?

Personally, I would recommend making sure you have cut out all the gluten before you try to cut out dairy or other things you could be intolerant to. I do agree that an easy diet of basic meats, veggies, fruits, rice, potatoes is good - not many processed foods so your body can heal. If you change your diet completely then it will be hard to figure out if what really made a difference. I would think that if you eliminate all the gluten then you should see a difference within two weeks. If you are no better then I would try eliminating dairy and see if that helps. If you are already positive that you have eliminated all sources of gluten, then maybe it is time to take something else out of your diet.

Good luck!

[Noel1965]

Thank you all for the advice. I think that I have eliminated all gluten but I do not KNOW that. Do you think that you need different pots and pans (clean ones used by others are not okay?)? I have checked out all my cosmetics etc and try to be careful in washing my hands. I no longer eat in restaurants (what a bummer - used to eat out 4-5x's/week). But if I was still getting gluten occasionally don't you think that I would feel sick at times and well at other times? I will also try a basic diet and go from there. Thanks again Cassidy, JerseyAngel and Carla!

[Rusla]

Welcome to the board.

You maybe be very sensitive, like I am a few crumbs can make me sick. I have to wear gloves when I clean off my desk at work with alcohol wipes but i know if I ended up with hidden crumps by if I get a reaction. I never eat in the lunch room at work because it is loaded with gluten. All our desks and equipment except our headsets are shared. You should check these things out also.

[Noel1965]

Welcome to the board.

You maybe be very sensitive, like I am a few crumbs can make me sick. I have to wear gloves when I clean off my desk at work with alcohol wipes but i know if I ended up with hidden crumps by if I get a reaction. I never eat in the lunch room at work because it is loaded with gluten. All our desks and equipment except our headsets are shared. You should check these things out also.

Thanks for the suggestions Rusla. I see you are from Calgary. I live just south of Edmonton. Anyway, I'm not worried about getting gluttenated at work but it is more difficult at home. Do you have your own set of pots and pans that are used only for glutenfree foods? Washing does not suffice? I don't know where this line is - it seems crazy!

[Guest cassidy]

I do have separate pots and pans. I think the biggest concern is if there are scratches in the pans. Gluten is sticky and it can be hard to get all of it out. I thought it was crazy at first, until I made gluten-free spaghetti and used the strainer that we use for all pasta. I was so sick. That was enough to convince me. Plus, now I get a little freaked when gluten food is near my food and I don't think I would feel safe cooking my food where gluten food was cooked. I really didn't want to have to be this careful, but I kept glutening myself and I did what I had to.

If you are only glutening yourself every once in a while, then I would think you would feel better and worse. However, if you are sharing pans and not being extremely diligent then you might be glutening yourself every day. Or, you could have another food intolerance. Is there anything that you eat every day that could be suspect? I would try being very careful for a week and see if it helps, then you will know that you are just very sensitive.

Hope you feel better! It really does get easier.

[Noel1965]

I do have separate pots and pans. I think the biggest concern is if there are scratches in the pans. Gluten is sticky and it can be hard to get all of it out. I thought it was crazy at first, until I made gluten-free spaghetti and used the strainer that we use for all pasta. I was so sick. That was enough to convince me. Plus, now I get a little freaked when gluten food is near my food and I don't think I would feel safe cooking my food where gluten food was cooked. I really didn't want to have to be this careful, but I kept glutening myself and I did what I had to.

If you are only glutening yourself every once in a while, then I would think you would feel better and worse. However, if you are sharing pans and not being extremely diligent then you might be glutening yourself every day. Or, you could have another food intolerance. Is there anything that you eat every day that could be suspect? I would try being very careful for a week and see if it helps, then you will know that you are just very sensitive.

Hope you feel better! It really does get easier.

Thanks for the help Cassidy. I shall get myself my own dishes/pots&pans - can't hurt. And yes I do get corn nearly everyday through popcorn or tortilla chips. I have considered trying no corn but it seems like such a big loss to add to what we have already given up......willpower willpower - I need more of it!