[jbug]

I went and saw the allergist yesterday and she took 13 vials of blood to see what is wrong with me. She is thinking that it is autoimmune and not allergy related because of the fact I get sick so often. Anyway she mentioned celiac because of the fact 2 of my cousins have it and my uncle does too but that wouldn't matter because he my dad's sister's husband. She also was very curious about my wound vac and had my home health nurse swab it. She wanted to know how it was infected and with what. She also swabbed the infection I have in my nose.

Anyway those of you with celiac disease how do you eat? I love bread, pasta and things like that so how do you eat stuff like that? I'm lucky that I like rice and quinoa. I am thinking that I might not be allergic to peanuts and am allergic to the wheat in the bread or crackers I am putting the peanut butter on. So if I do have celiac disease any advice?

Jan

[googley]

Jbug,

Hi. I was diagnosed with Celiac just over a year ago. It is quite an adjustment to have to change your diet. But if it is your problem, it will feel a lot better when you do. It can take a while for your body to heal from the damage that the gluten (what is in the grains that makes you sick) has caused. I really loved breads and pasta before I went gluten free. But found that after I went gluten free I didn't miss it as much as I thought I would. What was really important was making sure that I got all the gluten out of my diet. (It can be found in some really surprising places.) Cross contamination is a really big thing. This is when foods that don't have gluten in them get gluten in it when it is being processed (ie foods made on the same production lines as those with gluten in them). A really good site with more information is www.celiac.com It also has a board where you can ask lots of questions and people over there have a lot of good information and answer questions. Just make sure you keep eating wheat etc until all of your tests are done, because otherwise they can come back negative. I hope you find out what is wrong. Feel free to PM me with questions. I found it really helpful to ask people questions when I was going through the process.

[Perna]

If you have a health store near you, jbug; go check it out; there are lots of gluten free pastas and breads, other foods out there and online: http://www.glutenfree.com/index.cfm?...FcRM5QodVkz4iw) now.

[eskielover]

If you change your diet, you will probably be healthier than all of us here who are still eating the bad processed foods

[jbug]

I got an email from my cousin's wife that was so helpful. Thanks googley for all your help too. You have been so gracious in helping me along this journey. Kim (my cousin's wife) told me to stay on it for 6-8 weeks and to start slowly but slowly isn't in my vocabulary LOL. Today eating out was an adventure I at first was going to have a chili relleno but the server didn't know if it was breaded or not so I ended up with 3 tacos in corn tortillas with rice and beans. Kim also told me to stay away from Taco Bell because they put wheat in their meat. That made me sad because I love Taco Bell.

She also gave me an idea for sandwiches to use lettuce for the bread. I think I will do this instead of the corn tortillas because I just can't handle the corn tortillas. I will give them to my dad. I also found out that Twizzlers have wheat in them. So it is a good thing that Rex likes Twizzlers.

So many things to learn.

Jan

[jbug]

I called Taco Bell and asked them about putting wheat in their meat and they told me that it is only in the chili. So I was glad to hear that.

Jan

[Callista]

My mom's got celiac; it didn't take her that long to adjust to the diet. I was on GF/CF for several years as a kid (did nothing, since I haven't got celiac disease or lactose-intolerance, but there you go). My mom buys food from a health food store and eats a lot of rice. There are quite a lot of rice noodles available; also gluten-free stuff for pretty much everything you might want. You'll be doing more cooking yourself; it's just so much easier than worrying about every picky little thing on the back of the package.

You'll want to get with a nutritionist if you don't know how to read ingredient lists and nutrition panels; it's somewhat more complicated than just looking for "wheat" on the ingredients.

The big thing is basically just to avoid processed stuff, because wheat makes a good "filler". If you know the basic ingredients going into your food, you don't have to worry about hidden wheat that'll throw your digestive system for a loop.

Tip: Toast rice bread before eating. It tends to be slightly sticky if you don't. Also: Potatoes are starchy, and fill you up just as well as bread. Corn bread will probably become a staple; also, soups/stews (don't eat canned; they often use wheat to thicken it--make a big crock pot and freeze it in little plastic dishes). You're not actually going to be avoiding all starches; just wheat (and possibly barley, rye, and oats). Lots of cereals are corn-based. Tacos are great (corn tortillas, of course). And you've still got all the milk, meat, and fruit/veg that you want.

Rice flour isn't too difficult to work with. Just remember that it doesn't have any gluten (which is why it's a great staple for celiac disease), so you can't use yeast; you have to make "quick bread" with baking powder instead. Cookies work better than breads, because rice flour loves to soak up water even more than wheat flour does, and quick breads tend to be damp in the middle. Buy your rice bread; but you can easily substitute rice flour in wheat recipes for just about anything else.

[jbug]

It has been about 3 weeks now that I have been gluten free and I haven't seen a big change yet. I have been losing weight though so that makes me happy . Mom got me some gluten free pasta so I still have been able to have my pasta and I have been getting used to not eating bread because my family members that are gluten free said the gluten free bread isn't good. When I make a sandwich I just wrap it up in a lettuce leaf. Kim my cousin's wife gave me that idea. I am getting used to corn tortillas but the texture isn't what I am used to with a flour tortilla so I'm still not to sure about them.

Thanks for all your responses.

Jan

[Perna]

Make sure you get enough fiber with whole grain rice and oats! Make sure the oats say they are certified gluten free; oats are but often the farmers grow wheat other years in the same field and wheat "volunteers" get in the oats in the processing. Popcorn is a whole grain and has great fiber; I eat popcorn for lunch 2-3 times a week.

[sane1logic1]

Don't greatly reduce the amount of wheat, rye and barley in your diet until after placing yourself under a doctor.

The people at the web site mentioned are really nice, they will inform you of what tests to get the doctor to run.

If you change your diet in advance of the tests they will not show up correct, ever, no matter how long you switch from diet to diet in the future for a 'challenge', those don't work with gluten.

(My old doctor didn't send me for the right tests therefore I have to see to my own diets without medical support)

If you hope to get foods prescribed at low cost or can claim back the cost, you need to give the doctor the chance to have obtained the right results at the right time.

Ideally the doctor will bear in mind your history and symptoms - though in my country that is usually not done (for almost any complaint).

Everything the people here are saying is good bearing that in mind.

Some people at the web site mentioned have gone the route without the doctor, and a few have obviously needed the change but the tests confused the doctor.

It's just that, once changed there's no going back for tests as they won't work except before the first time (something to do with how the villi grow).

Happy eating!

[paulswife1]

i have had celiacs all of my life (i'm 46). I have to disagree with sane1logic1. Start glutten free immediately! Remove all wheat from your diet, and becarfull abouts oats i am allergic to those as well. Get your fiber from fruit and vegetables. Chex cereal has a glutten free line and nan's has gf waffles that are ok. Carnation istant breakfast shakes are good as well. They are 3 choices for breakfast. As for the rest of your meals, stick to protiens. You can add salt, pepeer, garlic, onion ect. To taste. Baked potatoes, rice for starch. Use real butter. Jiff peanut butter is also gf. The out back and pf changs have gf menus but you have to ask for them. I have found that all pasta tastes like glue so i just gave them up. (and i'm italian. It wasn't easy). Becareful of cross contamination too. If someone uses their knife in the peanut butter and then it touches bread and goes back in the peanut butter, it is now contaninateds. This isn't a phase, it is a new life stlye . It is not easy, but it can be done. good luck

[sane1logic1]

It can be done I totally agree. Merely saying, check out whether you want a chance of medical support, if your doctors are well enough informed (and it is chancy to a degree) ... and check out the web site concerned

[jbug]

I thought I would give an update...I got the results back from my testing it came back negative but my doctor explained to me that it could be negative and I could still have celiac or gluten intolerances. I am thinking that this is the case. Since I have gone gluten free I haven't had a sinus infection and before I had them every 3-4 weeks like clockwork, my bones and joints don't ache like they used to, my general outlook on life has changed I am just happier it is like the fog that was hanging over me just lifted. My headaches are better when I get a migrane type headache they aren't dibilitating and I am able to function and not be stuck in bed like I usually am. So I think there is something to me not eating gluten.

The main thing I miss is bread and my mom and I are going to check into the mixes you make in the bread machine because my Grandma has a bread machine. I have been craving bread and the prepared bread is so expensive almost $6.00 for 1 loaf and I just can't afford that so if I can make several loaves for the same cost I'll do that.

But all in all it has been a positive thing for me.

Jan

[googley]

Originally Posted by jbug

I thought I would give an update...I got the results back from my testing it came back negative but my doctor explained to me that it could be negative and I could still have celiac or gluten intolerances. I am thinking that this is the case. Since I have gone gluten free I haven't had a sinus infection and before I had them every 3-4 weeks like clockwork, my bones and joints don't ache like they used to, my general outlook on life has changed I am just happier it is like the fog that was hanging over me just lifted. My headaches are better when I get a migrane type headache they aren't dibilitating and I am able to function and not be stuck in bed like I usually am. So I think there is something to me not eating gluten.

The main thing I miss is bread and my mom and I are going to check into the mixes you make in the bread machine because my Grandma has a bread machine. I have been craving bread and the prepared bread is so expensive almost $6.00 for 1 loaf and I just can't afford that so if I can make several loaves for the same cost I'll do that.

But all in all it has been a positive thing for me.

Jan

Jan-
I'm glad you are feeling better. That is wonderful. And you doctor is right that these tests are not that sensitive so it is very likely you can have a false negative.

As to using your grandmother's bread maker, that isn't a good idea. It will likely have gluten in/on it even if you wash it well and so gluten will easily get into your gluten free bread. If possible you will want to get your own new bread maker just for gluten free bread.

[jbug]

Originally Posted by googley

Jan-
I'm glad you are feeling better. That is wonderful. And you doctor is right that these tests are not that sensitive so it is very likely you can have a false negative.

As to using your grandmother's bread maker, that isn't a good idea. It will likely have gluten in/on it even if you wash it well and so gluten will easily get into your gluten free bread. If possible you will want to get your own new bread maker just for gluten free bread.

I hadn't thought about that issue. Thanks! I bought some bread today that doesn't taste too bad. The only bad thing is it is almost $6.00 a loaf so will have to make it stretch. I also got some GF waffles and pizza crust. I have tried these before and haven't had any problems before. I was just craving bread so much that I was trying to fill that hole with other foods and gained 5lbs in 2 weeks. Part of that is water weight and I will take a water pill in the next couple days to get rid of that. I was just quite bummed to find out I had gained that much and my T and I talked about it and we decided that was one of the contributions. We checked into making our own without the breadmachine but buying each ingredient is expensive. I am trying to explain to my mom why yes you do have to use xantham gum. She doesn't think you have to.

Jan

[googley]

Originally Posted by jbug

I hadn't thought about that issue. Thanks! I bought some bread today that doesn't taste too bad. The only bad thing is it is almost $6.00 a loaf so will have to make it stretch. I also got some GF waffles and pizza crust. I have tried these before and haven't had any problems before. I was just craving bread so much that I was trying to fill that hole with other foods and gained 5lbs in 2 weeks. Part of that is water weight and I will take a water pill in the next couple days to get rid of that. I was just quite bummed to find out I had gained that much and my T and I talked about it and we decided that was one of the contributions. We checked into making our own without the breadmachine but buying each ingredient is expensive. I am trying to explain to my mom why yes you do have to use xantham gum. She doesn't think you have to.

Jan

Yes, You definitely have to use the Xanthium gum. It is often cheaper if you buy bread mixes that already have it or some other ingredient so you don't have to pay for it separately. It replaces what the gluten does (though not that well). I'm glad you have found bread and other things that you like.

[jbug]

We went to a chinese buffet today for lunch and something I ate had gluten in it and boy howdy did I ever get a headache. I forgot how bad it can hurt eating gluten. I am out of my migrane medicine so I am just having to suffer through. I am looking forward to tomorrow when my pharmacy opens and I can get my prescription refilled. Remind me to watch out for hidden gluten in the spices at the buffet.

Jan

[DancingAlone]

hi jan,

i know you have probably done tons of research, but here is a very informative web site about celiac disease, with recipes, types of bread you CAN eat, a book to help, articles, newsletter, online stores for ordering foods, and even forums for discussion. take care. sending you good thoughts tonight. i wish you well.

http://www.celiac.com/