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Feeling Frustrated

lonewolf

By lonewolf
in Coping with Celiac Disease

Recommended Posts

lonewolf Collaborator
lonewolf
Posted

I've spent the last 10 years coping with being "allergic" to wheat/gluten, soy, eggs and dairy. I won't even go into all the health problems I had before finding this out and the ones that have still managed to pop up after eliminating all this from my diet. Believe me it has not been easy cooking for my family and trying to find a balance of things I can eat that they like and not "cheating" when I make them something I can't eat. I have 4 kids and a husband who all like to eat lots of stuff that I'm allergic to. I work part-time too, so most of my "free time" involves cooking.

I have been on lots of Celiac websites in the past 10 years getting recipes, but never looked at any other information until a couple of weeks ago when I was trying to find some good Thanksgiving recipes in the baking tips forum here. After reading posts in several forums it hit me that THIS is what's "wrong" with me. I'm NOT crazy! I have had undiagnosed celiac disease for probably my whole life. My dad probably had it too and at least one of my brothers must have it too. Patronizing doctors who suggested I need counseling or to accept my minor health problems as "just part of getting older" were the crazy ones. (I'm only 42 - I'm NOT old.)

Now the frustrating part. I have been ignorant of how to completely eliminate gluten from my diet. I did go for a period of time where I ate spelt regularly, but soon realized that it bothered me. I haven't eaten anything else obviously containing gluten, except for a few slip-ups for almost 10 years. But I am just now finding out that I must eliminate all the hidden glutens. I was aware of them, but thought since I didn't have celiac disease, that I didn't need to worry. Trying to find food that is completely gluten-free without soy, eggs and dairy is harder than I thought. I really don't want to go back to cooking "my" food and "their" food every day, but I'm wondering what else I can do. I already spend an arm and a leg on food as it is. Everyone already eats low-gluten, low-egg, minimal dairy and almost no soy, but it's a big jump to 100% gluten-free.

Now, my husband thinks I'm over-reacting (I wouldn't eat the sausage at breakfast because it has "flavorings" and "spices" and doesn't say gluten-free). My in-laws think I'm even more crazy than before. They all eat anything and everything and think it's all in my head. And I'm mad at myself and my doctors for not figuring this out before. I'm having a hard time coming to terms with not being able to go out to dinner with my family to our favorite restaurants, all that I had thought were safe, but realize that there must be a lot of cross-contamination. I'm dreading holiday get-togethers with family and friends where I have to be even more picky than I was before. Arrgghh - I'm just having a frustrating day!

I'm just whining now, sorry, but had to vent. After reading hundreds of posts, I came to the conclusion that "these people will understand me". I hope I'm right. Thanks for "listening".

Liz

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jenvan Collaborator
jenvan
Posted

we do understand :) gluten can make a real mess of us! suggestions for being 100% gluten-free. get lists that help. there is the delphi list, clan thompson list...and as you call manufacturers, make up your own list too. another tip is to stick to simple, whole foods like veggies, fruit, unprocessed meats. go here to see safe and forbidden ingredient lists: https://www.celiac.com/st_main.html?p_catid=12 they are a big help when shopping. good for you to not eat the sausage! your husband and friends may scoff...but you'll have to be vigilant. have you ever checked over the products you use for gluten--like shampoos, lotion, makeup etc?

i know it can be frustrating cooking those "alternative" meals for our families--and wanting them to like them! i like to stick mostly with the whole foods i mentioned, variety of meats and veggies, and fruit and use good seasonings to cook them. we do eat some rice and quinoa, which are great fillers or side dishes. beans are good too...black and pinto are my favorite--most mild bean taste and texture to me. lentils are great too. any of those you can prepare from scratch or pull from a can to be quick. we eat a lot of beans, rice combo type dishes too. gluten-free pizza, lots of homemade soup/salad nites. we don't eat much bread, but will make gluten-free toast and cheese sometimes. i use kinnikinnicks bread mostly. for pizza crust, bread sticks and a myriad of other bread goodies, i use chebe mixes...well loved on this site. you mentioned sausage, one of my favorites is Han's all natural. great chicken sausage. i use it in soups, rice and beans on the grill. (go here and scroll down to my post on which Han's sausages are gluten-free and their website: Open Original Shared Link ) stirfries are good too with variety of seasonings and homemade gluten-free sauces. hope some of these give you ideas!

be encouraged that you can cut out hidden sources of gluten still eat and cook good satisfying meals. i think its helpful to build up a repertoire and alternate meals from there. i'm sure this forum will be a help you!

Carriefaith Enthusiast
Carriefaith
Posted

Welcome :)

so most of my "free time" involves cooking.
I know what you mean, I do a lot of cooking and playing around with recipes because I basically have to cook mostly from scratch all the time. For example, tonight I am making 4, 6-inch gluten free pizzas. I'm eating one tonight and freezing the rest to eat during the week. If you would like recipes or meal ideas, I would love to help.

I have had undiagnosed celiac disease for probably my whole life.
Have you ever been tested for celiac disease while you were eating gluten? If you want an official diagnoses of celiac disease then you would need to go back to eating a lot of gluten for 3 months. This may not be an option, since gluten will probably make you very sick right now. I know that I couldn't go back to eating gluten for 3 months now... I'd most likely end up in the hospital. Some options, would be to get the celiac gene test done. This test will tell you if you have the celiac gene. Another option would be to get a skin allergy test done, which would tell you if you have an allergy to certain foods like wheat, dairy, or soy. This test will not tell you if you have celiac disease or an intolerance to gluten though.

Now, my husband thinks I'm over-reacting (I wouldn't eat the sausage at breakfast because it has "flavorings" and "spices" and doesn't say gluten-free).
That's not over-reacting at all. If in doubt, leave it out B) Maybe print off some info about celiac disease and the gluten free diet for him to read and he may understand how serious it is to be 100% gluten free.
jerseyangel Proficient
jerseyangel
Posted

Hi Liz, I do understand--My husband and son are not gluten-free but this really does not pose a problem for us. The meal that we eat together (dinner) is usually meat, veg, potatoes, rice, or gluten-free pasta w/sauce and my gluten-free meatballs, etc. Regular dinner stuff tweaked a little here and there where necessary. They have their bread, I have mine. They eat what they like at breakfast and lunch--we're all on different schedules anyway. They are respectful of me--they don't leave crumbs, wash their hands after touching bread, etc. And this is all in a relatively short time--6 months and its routine now. I completely understand you being sick for a long time, trying everything you could think of and now have an answer that makes sense. Going gluten-free is not hard or unpleasant. You can do it. Your family will (hopefully) realize how important it is for you to stick to it 100% when they see how much better you feel. There is a lot if info. here on how to eat well without spending a ton of money. There are great gluten-free products and not so great ones. We talk about them and share our experiences about it all. Remember to make sure your personal care products are gluten-free. Thats just as important as the diet. I got continually glutened by my hair gel. You'll find lot of tips regarding setting up the kitchen so you won't be cross contaminating yourself. Once done, it'll run smooth. Come on here and ask questions or vent anytime! :)

Guest gfinnebraska
Guest gfinnebraska
Posted

Hi Liz... I'm 42 as well, and felt like I "woke up" when I started reading this site. It is amazing how I "thought" I was doing so well until reading on here for a few hours. THEN I realized I was doing everything wrong. The whole cross contamination issue totally freaked me out.

The GOOD news... it does get easier. The family will eventually understand, and life will become happy again. It just takes time and lots of reading on here! :) Plus the world out there as a whole is becoming so much more aware of celiac disease and gluten reactions. There are many restaurants with gluten-free menus, and just remember that being with your family at a restaurant is more important than eating with them. You can always get a drink and eat a good, gluten-free meal when you get home. :) I do it all the time.

I am thankful that you found this site and can start a new life from today forward!! Please feel free to e-mail me with questions, or just post more new threads. Everyone is here to listen and help. :)

lonewolf Collaborator
lonewolf
Posted
  • Author

Thanks for the responses. I can't figure out how to work the "quote" feature, so please bear with me.

I have had food allergy testing done. That's why I said I was "allergic" to wheat/gluten, soy, eggs and dairy. That was done 10 years ago. I am NOT going to eat gluten for 3 months to get an official diagnosis. I would just about die after the first day or so. I do understand the difference between being allergic or sensitive and having celiac disease. I think I must have both. Gluten was off the charts on the food allergy testing results, but the doctor said it really wasn't that big a deal, just avoid wheat. One of my main frustrations is that no one figured out that I had celiac disease or am simply totally gluten-intolerant before now. It sounds like lots of people have had the same experience, diagnosed with IBS, told it was all in their heads, etc. I am waiting on a call from my naturopath to see if she does the gene testing for celiac disease (for me). All 4 of my kids will be tested (blood tests) as soon as I can figure out which doctor and how to get the insurance to pay for it.

I have LOTS of experience cooking with these allergies and making yummy food. Just last night made gluten-free, egg-free, dairy-free, chocolate-free brownies. (They are delicious if you choose to like carob.) My frustration is redoing my cooking AGAIN and eliminating things like bread crumbs from the almond butter jar and cube of butter. Finding out that the cereal I thought was gluten-free has caramel coloring in it and realizing that lots of products I have (condiments, etc) aren't totally gluten-free is throwing my cooking off a bit. I'm more feeling sorry for myself than anything. (Shame on me, I'm too old for that!)

Thanks again for your "listening" ears.

Liz

mightymorg Rookie
mightymorg
Posted

Hey Liz! We all understand; this process can be trying at times. But you've already accomplished so much in revising your eating habits--only a few more steps and you'll be completely gluten-free!

I myself am awaiting blood test results. Though, even if they do come back negative, I want to stay gluten-free. Now, when I eat, I don't feel as though a war is breaking out in my GI tract afterward! I was diagnosed like you with IBS--without any additional testing! Nothing worked...enzymes, probiotics, Zelnorm, laxatives...it's amazing how ignorant doctors can be these days. You aren't alone in the way you feel! :)

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Carriefaith Enthusiast
Carriefaith
Posted
I have had food allergy testing done. That's why I said I was "allergic" to wheat/gluten, soy, eggs and dairy. That was done 10 years ago. I am NOT going to eat gluten for 3 months to get an official diagnosis. I would just about die after the first day or so. I do understand the difference between being allergic or sensitive and having celiac disease. I think I must have both. Gluten was off the charts on the food allergy testing results, but the doctor said it really wasn't that big a deal, just avoid wheat.
I have a wheat allergy and celiac disease so you could have both. That's really annoying that the doctor didn't to a celiac blood test based on those results.

My frustration is redoing my cooking AGAIN and eliminating things like bread crumbs from the almond butter jar and cube of butter. Finding out that the cereal I thought was gluten-free has caramel coloring in it and realizing that lots of products I have (condiments, etc) aren't totally gluten-free is throwing my cooking off a bit.
If you want to go 100% gluten free you will have to have your own condiment jars, toaster, deep fryer, ect. I can e-mail you some gluten free product lists if you are interested.
jenvan Collaborator
jenvan
Posted

Liz-

Since you have quite a bit of experience cooking allergen free--feel free to share some favorite recipes with us ! :)

lonewolf Collaborator
lonewolf
Posted
  • Author

Okay, feeling better today, much less frustrated. Talked to my husband and explained, patiently, that I have to be even more careful now. He was a bit more understanding. We came up with a plan to keep bread crumbs, etc. out of my food.

My 14 year old daughter is going gluten-free for at least a week, because she is scared of needles and wants to see if the diet helps rather than getting blood tests. Among other things we got our own jar of jelly and labeled it "gluten-free". This morning I made gluten-free pancakes for everyone except me - made them with eggs so they would work, but I can't do eggs. Anyway, everyone liked them, so I don't have to contaminate my griddle with spelt flour after the thorough cleansing I gave it.

I do enjoy cooking, so I will post some recipes in the appropriate section. I need to recheck all my ingredients before making anything else. I specialize in cookies, they seem to be the easiest thing to adapt. And if anyone is also allergic to chocolate my carob brownies are easy and delicious. I did just post a recipe for Lefse (Scandivian holiday flat bread.)

Thanks for your encouragement. I think I am regrouping and will be okay.

Liz

jerseyangel Proficient
jerseyangel
Posted

Glad to hear you're feeling so much better today :)

jenvan Collaborator
jenvan
Posted

glad you're better Liz. saw the lefse--will try it, new thing to me :) cookie recipes are appreciated. i have a few i am going to try for this week--i am having my annual christmas cookie exchange on sunday. would love to make some gluten-free cookies to blow my non-gluten-free friends socks off! :P

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