having a miserable time sticking to my gluten free diet

[kimhines@austin.rr.com]

I have been told I have celiac diseast for about a year and a half now. During this year and a half I half really tried to stick to my gluten free regimin for about 6 1/2- to 7 months. I keep realizing though, even when I try to be pretty strict about it, (reading labels) etc., I keep getting it by accident. (An example is my husband does most of the cooking, and has a hard time believing that gluten can hide in spices!) So he would just put what ever all over our gluten free corn pasta, and then it's sort of like, why even get the corn pasta in the first place! He's starting to realize that gluten is in a lot more things than he originally thought, and is really doing his best now to be more careful. But if I'm not watching, I'll somehow contaminate myself, and many times it has nothing to do with him, it will be in a restaurant, or another mistake I end up making. I realize that I will have to do the cooking, all I can say is YUCK! I hate cooking, not meaning to be a big baby, but I will do almost anything before cooking, clean the toilet, the oven, etc, just don't ask me to cook, because I have no idea how to. But the truth is with this disease, I'll have to learn. I have to know what I put in my body. Because every time I risk it, I end up contaminating myself. I'm going through a pretty severe depression right now because my health has gotten so bad. For a while, like I said, I was reading labels really carefully, but lately I don't seem to care as much. I got so depressed the other night I actually had 2 pieces of toast. After not eating buttered toast for a year and a half it was a wonderful experience! Until, the bone and joint pain came and all the stomach issues with having celiac disease. I'm just really depressed, I think I've realized that I will have to buy my groceries on line, and am afraid of the prices, compared to my normal supermarket. But there is just not anything safe there. I do go to whole foods market a lot, and I figure the price of whole foods should be about the same as buying my groceries on line, why does this disease have to cost so much money??
Kim
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dogs teach us more about loyalty and unconditional love in the short time they're on this planet, than human's could ever teach eachother in a whole lifetime.

[aklap]

Hi Kim,

Welcome to the board! Maybe we can help you get thru this and get beyond your gluten induced depression.

I think you can still get thru with w/o having to cook . It sounds like like things just need a little tweaking...like NOT EATING TOAST!!! Doing that will only cause you to spiral further into depression. I don't think that's the place you want to be, is it?

I would consider stripping everything out except for whole foods. By that I mean foods that minimally processed: fresh fruits and veggies, plain meats, seafood, poultry (NO MARINADES!). Pull out all the boxed processed foods - most of that stuff has gluten in it. Once you get your body stabilized, you can branch out and slowly add GF processed foods if needed.

I assume your house is not 100% GF. A 100% free would be the ideal setting for you. That way there is no chance of hubby contaminating you. I do understand that having a 100% GF household is not always do-able (for whatever reason). We are a split house. I am GF, my wife is not. Because we have no kids, it's pretty easy to keep crumbs and other contamination issues (mayo jars, butter dishes, peanut butter jars) at bay. The "base" of all our meals are GF. If I make chili (w/o pasta which is how I like it) - it is GF. If Peg (my wife), wants to put macaroni in it..she'll make her own and add it to hers. The same goes for spaghetti. The sauce is GF, she makes her pasta, I make mine and we build own meals. Using seperate pots & utensils of course. We have my GF pans & utensils and the NGF pan's & utensils. All seasonings are GF, spices, mixes are GF. The only things that are not GF in the house are her breads, pastas, cereals, cookies.

I am glad hubby is starting to see the effects of hidden gluten. It takes just a small amount for some to react. Even if you do not have a 100% GF household, it's still possible for him to a GF meal. You need to go thru all food items that he cooks with and throw out the things that have gluten in them and replace them with GF versions. McCormick pure spices are GF. McCormick is a GF friend company - they will clearly list gluten if it's there. They will not hide it in "modified food starch", natural flavors, etc. You do watch their other products like the like chili mixes, taco mixes, etc, because those do contain gluten.

You can check the ingredient list of the product against these lists: Celiac.com's Safe & Forbidden Food Ingredient List. Anything with Modified Food Starch, Natural Flavors - should be pitched UNLESS you know what those items are made from. That can be verified by calling or emailing the maker of the product.

Another thing you can do is check the product against these lists:
Delphi Food Lists
Chicago Mainstream GF Food List - These products can be found in just about ANY store.
Whole Foods GF Products


You should always verify youself (by reading the label or by contacting the maker) if these products are truly GF. Products can change very quickly and often w/o notice. Use these lists with caution

Cross contamination issues can be huge problem. Like using the same spoon to stir his NGF pasta ot stir your GF pasta. Make you check out the Cross Contamination Thread we have. There are many things here to consider.

If you uses the above lists, GF food does not have to be expensive. If you stick to the whole foods or even use the lists, most GF food can be found in a grocery store. Yes, the specialty items (Pasta, bread, baked goods) can be expensive. But if you use the sparingly - you budget will support it. The other thing you can do is bake those things for yourself. The homemade stuff is WAY better than store bought. Hopefully hubby likes to bake Fortunately Peg loves to bake and have convert many many NGF baked goodies for me . I cook..but baking is WAY to precise for me!!!

Eating out is always risky no matter where you go! I would suggest try going to places that only have GF menu. You still have to be concerned about cross contaminiation issues...but it's a step in the right direction. Be sure to check out our Dining Forum. There's lots of place that have GF menus.

I hope this helps...if you have any questions...please feel free to ask! We are pretty easy going here.

Take care! Good luck in your GF Journey!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[kim hines]

To Al or (Alclap),
I'm still getting used to how to use this forum. This is the first forum, I've been on, so excuse any mistake I may make while learning to navigate through this system. You are sooooo kind for writing me back, and with such great advice! I was wondering if anyone would write me back, and I started thinking about it, and realized my message did look a tad bit on the depressing side and that maybe that was the reason, no one wrote me back. So thank you for at least making me feel welcome to this new forum.

I do know one think for sure though, no one is ever happy to find out they have celiac disease. I was diagnosed about 1 & 1/2 years ago after a surgery for severe gerd, or acid reflux disease. The acid reflux I had was horrendous, it would wake me, and my poor husband up about every 15 minutes during the night, with me constantly coughing, and I would have a severe burning in my throat that was so alful, I would almost choke to death by sticking an ice cube down my throat to help with the horrible burning sensation. It was really bizzare, I don't know exactly what caused the acid reflux to become so alful. But when I went to the doctor, he did some tests, and after I got a second opinion, surgery was the only solution.

After surgery, the acid reflux was gone and life was back to normal again. However about 6 months later I started getting major bloating in my stomach and other unpleasant stomach problems. When I went to a gastroenteralogist she immediately felt my stomach and told me she suspected celiac sprue. I thought she was crazy! And thought, well hoped more less, that she was wrong. However things just got worse. And she ordered a Promethius test, and a biopsy and it was proven true. Luckily the biopsy at the time did not show any damage, but the test proved, indeed, I did have the disease.

This was so hard to believe and accept for me, because I never had a problem with wheat, flour, or gluten before. However I know now that this disease can remain dormant for years, and that surgery, especially stomach related, can bring it out.

So here I am. Over all I have been really careful. My problem has always been, a lack of information and confusion. I know the basics, you can't eat any type of flour, wheat flour, (basically breads, cookies, cakes), all of everyone's favorite foods. I know basically what to look for on a label. I know about modied food starch (unless it says it comes from tapioca) or something. I can't eat oats, it has the same effect as wheat on me.

I know not to eat malt, wheat flakes, whole wheat.
(I'm a little unsure about artificial and natural flavors, and citric acid) I've heard bad things about them, but I'm still confused about them. Maybe you could give me a complete list, I don't understand if I need to avoid artificial and natural flavors, or exactly why. Or if I should avoid citric acid. Like I said Al I'm still really confused. I'm trying but not always getting it right.

About cleaning out my cabinets, I have already done that. I do check often though, especially those darn spices! We do not use chili powder, taco flavorings, or marinades, thank goodness, my husband knows we just can't. He likes stuff like Montreal steak seasoning and Montreal chicken seasoning, which I have to check, constantly, and am unsure if its entirely safe. I've basically told Alan (that's my husband's name too) that he can't use just any spice anymore. And I've looked at the ingredients to the best of my ability, and have thrown out quite a few. If something tastes too good, for example (hah, hah) I pretty much know it's not just salt and pepper. So I'm on constant alert!

He's so great though, and he's willing to learn. And he has learned so much. I will occasionally take some can items from the pantry and put them on the table and quiz him to see if he can guess which items are safe, I mean he doesn't have to sleep on the couch if he gets them wrong or anything, hah, hah, but it's important for him to learn, and thank goodness he cares enough about me that he wants to learn.

The problem happens when he's too tired too cook and we grab something to go, and we are too lazy to cook, and sometimes too lazy to be as careful reading labels or to watch out for cross contamination as I should be.

The other day I called the lady who runs the celiac sprue association here in Austin, Texas. She was the first one who ever really made me realize the danger of cross contamination. She told me something that completely flabbergasted me about this barbeque restaurant in Austin, Texas called the Salt Lick. They tend to bring out all the meat for the entire table on one big platter, and on top of the meat will be the bread, anyways, even if your meat is on the very bottom, and not even touching the bread at all, it will still be contaminated by the bread at the top. That sort of blew my mind.

You and your wife sound like your so much more organized and careful, and I really admire that. The way you seperate all of your cooking utensils, cutting boards, etc., is really smart and is the way to do it.

My problem Al happens when me and my husband Alan are too tired to cook, that's when the accidents, or temptations occur. Me and Alan will go to the grocery store, or whole foods, and I'll purchase something GF and Alan might get some granola bars, or non GF cereal, or bread. So it's in the home. And if we run out of food due to lazziness and hunger kicks in, and all I see is Alan's non gluten free cereal, granola bars, or white bread, temptation usually wins. I eat it. It's usually really good. Duh! Then guilt kicks in and I feel absolutely terrible about myself, and get really concerned about my bad behavoir increasing my odds of getting Lymphoma.

Then usually that night, or the day after, is when I get the bone and joint pain in my legs and hands, and my stomach issues. I need to get serious again about picking myself up and taking care of myself again health-wise, and I will. I'm just at a low-point right now.

Thank God, there are nice people like you around to offer hope, inspiration and guidience. This disease isn't the end of the world! I have controlled it before, and didn't touch gluten for about 7 months, I almost got to the point where I almost didn't even think about it. I will get back to that point. I'm sorry I talked your ear off, I'm just so grateful you wrote me back, I started to feel like maybe no one liked me, or thought my post was too depressing. Things really are not so bad.

In fact on the 12th of October in austin, me and Alan are going to a celiac sprue meeting to meet a woman who makes delectable gluten free cakes. She was a baker who came down with the disease, she of course was seriously depressed at first because it was her job to work with dough all day, but decided to turn the situation around, and decided to jump headfirst into the GF baking buisness. And now she's famous for her delicious GF cakes. I'm really looking forward to going. My second meeting. That's what you need when you have celiac disease, lots and lots of support.

Thanks for listening,
your new friend on the forum,
Kim[/b]

[Judy]

Hi Kim! My husband has had celiac for 24+ years and I know from his experience how hard it can be. Be assured you can shop at regular grocery stores - I do it for him all the time. My personal opinion is that you really have to plan ahead. I don't think you can just eat on a whim anymore - at least until you have the diet down pat. As Al mentioned, the first thing you need to do is to eat only whole foods - fresh meats/fish/fruits/veggies. Add the gluten free products to this - breads, cakes, cookies, etc and you'll find you'll be feeling great before you know it. Once you get to feeling really good again, you'll be hard pressed to eat something that will make you sick. Its a process that can have a bumpy road, but you'll eventually smooth it out. I don't keep a gluten free kitchen, but I am diligent with my husband's food. I don't cross contaminate his butter/peanut butter/etc with my food. Maybe the thing for you to do would be to be in the kitchen when your husband is preparing dinneer - you could be checking the labels of things before he adds it to your food. Most pure spices (McCormick) are gluten free. There are tons of food lists here and lots of wonderful people to help.
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Judy