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ginnybean32

Im Newly Diagnosed And So Angry

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Ginny -

Wow, I feel for you. I also am in agreement with you. I am not so much angry, but I am certainly having a pity party for myself the last couple of weeks. *sigh* I have been eating meat, fruits and veggies and feeling better when I do, but then I feel just so darned deprived that I eat something else that winds up making me sick, even though it "should" be gluten-free. I am clueless what is going on, and I'm tired of feeling like a freak. My DH is very educated about nutrition, but looks at me crazy when I say that I can't eat something because it says on the label it's made in the same plant as gluten foods. He thinks it's insane that minute traces can make me sick, even though he understands about nut allergies and trace amounts as well.

Easter is coming up, and my mother - knowing FULL well I am not eating gluten - is talking about her menu, and everything on the list is something I can't eat. She will get offended if I bring my own food, and put out if I mention that she's overlooked my new eating and realizes she hasn't planned for it. I haven't even TRIED going out to eat, though I did go to a wedding praying for foods I could eat (fortunately, plain rice fruit salad and carved beef made for a nice meal for me).

I miss foods that I once ate, but I also am overwhelmed at having ZERO options for foods that don't make me feel sick. I like SOME junk food in my life, but it has all proven to be a no-no.

As for making "separate" meals, I would just try to make what I consider "modular" meals... Have the main course and veggies be something you can eat, and then make a "side" dish of something that has gluten but you can't eat. If you have four things for the table, but you only eat three of them, you won't necessarily be making two whole meals, and you won't be a target for your husband's criticism because your plate won't look completely different. Don't try to replace all of the gluten foods with gluten-free, just eliminate a lot of them from your cooking entirely and replace them with other things you can eat that aren't "imitations".

Corn is OK for most people - so you've got corn on the cob, grits, that kind of thing...

As for desserts, why not have a pie for your birthday instead of cake? Instead of making a pie crust with flour, you can make one with nuts. A fruit pie using corn starch should be fine for you.

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Easter is coming up, and my mother - knowing FULL well I am not eating gluten - is talking about her menu, and everything on the list is something I can't eat. She will get offended if I bring my own food, and put out if I mention that she's overlooked my new eating and realizes she hasn't planned for it. I haven't even TRIED going out to eat, though I did go to a wedding praying for foods I could eat (fortunately, plain rice fruit salad and carved beef made for a nice meal for me).

I miss foods that I once ate, but I also am overwhelmed at having ZERO options for foods that don't make me feel sick. I like SOME junk food in my life, but it has all proven to be a no-no.

I know exactly how you feel...I brought up the fact I cant eat gluten wheat and dairy and asked my mom if she could like leave the butter out of some vegtables so I could have some and she basically accused me of being selfish to think she should modify her cooking just for one person when no one else has issues with the food and everyone looks forward to her food the way it is. I understand but it still hurts...she wont mind me bringing my own food but If it werent for my kids I wouldnt bother even going down there for easter this year. She is usually a very kind and compassionate woman but unless your from the south its hard to understand that you just dont mess with a southern womans cooking...

I did find at Whole Foods Grocery some cookies that taste awesome and they are dairy free and gluten free and some are soy free. They are Pamela's brand and I bought the chocolate chip walnut ones...they were really good. Im going back tomorrow because I ate all of them in 2 nights...lol Now if I could find a good milk replacement that isnt so sweet tasting I'll be happy.

Thank you all for all the web sites and recepies...I appreciate you all so much.

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I keep strawberries blackberries apples grapes and bluberries in the fridge to put on cereal or in yogurt mixed with granola and now I cant do that.

I too miss granola. I discovered this and it is really good in yogurt. I don't have any other intolerences that I know of at this time, but maybe you can find a different type of yogurt. This is really tasty and gives me the crunch I'm looking for. And it's made from buckwheat which is really good for you.

http://wogglebug.com/recipes/buckwheat-cereal.htm

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It is perfectly normal to grieve for your "old" life--the one in which you ate without thinking much about what was in your food. Trust me, I grieved for a long time, and I even had a very supportive husband and kids on board with me.

Your doc probably wants you to avoid dairy for a while because often, celiac disease can cause secondary lactose intolerance in some people. Once your villi have healed, you may be able to reintroduce dairy, maybe not. Some celiacs also have dairy intolerance. I recently realized I have to give up dairy as well as gluten, because dairy causes the same kind of symptoms in me that gluten does. It's a pain, but my health is well worth it.

It does stink, though, because while there is a lactose-free Amy's pizza, it's not gluten free. And the gluten free pizza has regular cheese on it. One thing I've had to to is revise my plan to search for substitutes for my old favorites. I can't have pizza, well, are there other delicious treat foods I can have that are gluten and dairy free? I can fry my own tortilla chips and make guacamole. And pico de gallo. Mmmm. I can make migas--scrambled eggs with tortillas in them, with eggs and peppers and the like. Lots of Mexican, Asian, and Indian foods can be very easily made dairy and gluten free, if they're not already! It's a chance to explore cuisines. And if your family turns their noses up at it, well, more for you.

For bread, try Pamela's Amazing Bread mix--it's dairy free, you add oil and eggs to the mix and it makes very nice bread. I love it. So much that i don't make it very often, or i'd eat the whole loaf! It's very good with non-dairy cream cheese, by the way.

The only other advice I have is: stand up to your kids. YOU are the mom, you have a health issue, and you deserve their respect in this matter. Why can't you have gluten free and dairy free food to eat at your daughter's party? Does she even want you to throw her a party? Maybe not, with that attitude. I am shocked at how non-supportive your husband is, but he's an adult and you can't control him. But the kids? They need to stop the snotty attitude and realize that you're not doing this to make their lives miserable. Sheesh. Maybe you need to just focus on making delicious, naturally-gluten-and-dairy free meals for yourself, and nuke frozen dinners for them. Seriously.

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Once I do learn how to cook gluten, dairy, and soy free I would love to be able to fix one meal for us all but that will never happen. Not with my dh.

Hope he doesn't mind starving...... (OK, I'm a bit of a witch!) It will get easier - the first month or so is really challenging, but the longer you do this, the easier it will get. We have been gluten-free for almost a year now, and it is second nature now. You will get there, and we are all here to help you get through the early stages! You're going to do just fine -

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Thank you all for helping me but esp I didnt know you can have withdrawl from gluten. I thought something else was wrong with me. I have the headaches and hungover feeling and also have been getting dizzy...esp after I eat. I dont know why but Ive had to make my 16yr old daughter drive me around this week because Im scared to drive while dizzy. I definately have the exhaustion...I'll be glad when that goes away. At least today I was able to stay out of bed which I normally have to stay in bed because just sitting up to watch tv exhausted me. My doc said I had bad malabsorption and it will take time for me to heal.

Another thing and this sounds crazy I know but now after I eat I feel high as a kite. Like I took a vicodan or smoked pot. It lasts maybe 5 minutes or so and then it goes away and it only comes right after I eat. I do not do any drugs or take any rx pain meds. I dont want to get addicted to food because it gets me high! LOL

Im going to try what yall are telling me to do but unless your from the south in the us its really hard to fathom the ignorance and stupidity even educated people have here compared to somewhere like ca. I live close to birmingham so thank god Im not far from a somewhat decent civilization but things like eating out near where I live will be impossible. There is an Outback resturant within a reasonable distance so I'll call them and check it out. I know it will take time to find the places I can go Im just overwhelmed right now. I have been so sick for so long I want to avoid any more "problems" my family is spoiled and I guess they feel they have been inconveinced enough by my illness and they are ready for me to go back to normal without anything changing in their lives. I wonder if they would treat me this way if I did have cancer? Maybe I need a new family along with my new diet.

At least my poodle loves me no matter what I can eat. I have him as long as the vet can find out whats wrong with his stomach. I wonder if dogs can get Celiac or something like it?

And I have you guys it seems...thanks again and again.

I feel for you and know exactly where your comming from. I'm southern too and people do look at you like your crazy when you try to explain it to them. I have a couple of othe points as well: I found the the first three to six weeks to be the hardest. I can't tell you how many times I cried. I was releved to know my symptoms were fixable but making the change was hard. When I was so sick my mother was supportive but the moment we realized going gluten-free worked we had a family gathering and she said my diet was my problem. The family changed thier tune as soon as they saw what happened when I got glutened. After that they started changing thier tune. I understand that you don't like to bake and such but it would be easier for you if you were able to tolerate it. As far as your dairy allergy there is soy and almond milk. Experiment with them and see which ones you like. You can use those just like regular milk. Enjoy Life products are allergen free and made on dedicated lines. Also look at the online store here they have things labeled. I'd be happy to try to help you cope just pm me.

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I was dx with Celiac by biopsy about a week ago. Ive been doing the research and lurking around your forums to see what I am going to go through and how to get help with diet and coping. I havnt seen any posts so far about people feeling anger like I am or maybe I havnt found them yet. Mostly I am seeing that most of you are relieved to get a diagnosis that its ok to have to change your whole lives for this beast.

I am soooooooooo angry. I am not relieved I know why I was so sick on and off my whole life. For me I feel I got a cancer dx and my chemotherapy is going gluten, wheat and dairy free. Chemotherapy is a harsh toxic medicine. I feel "my medicine of gluten-free is equally toxic." I should be grateful I found out the real problem right? I dont. I feel like I would if my beloved little poodle died. I am literally grieving the loss of gluten wheat and dairy. I was in whole foods yesterday and went to the bakery praying I could find some kind of rice bread or potato bread or something but if it was gluten-free it still had milk or butter in it. I cried right there on the spot when the guy told me that. I just dont know what to do. I did find with the help of the customer service people at whole foods some things I can eat but there still was not a whole lot of selection for me because of the dairy allergy as well. Then I would find things that are gluten-free and dairy free but had been manufactured on machines that had made stuff with wheat, gluten or dairy products. I have never been a baker so when it was suggested I get gluten-free dairy free flour and make my own breads I could have died. I did find some waffles last night and when I went to make them this am and got ready to put them in the toaster I realized I couldnt because regular breads, bagels etc had been in that toaster. My husband thinks I am over reacting but he made it clear he would not eat gluten-free and dairy free and that its stupid to buy a toaster just for me or get new pots and pans.

I have had to get rid of most of my makeup and lipsticks...Im researching my shampoos and soaps..but do I have to clean the shower after my husband and before I use it? I feel like a riduclous person. I dont want to have to worry about these kinds of things. I have a friend that lives in Portland and she used to live in LA. When I went to visit her and we ate out it was very common to hear people asking about what is in the food? Is there dairy or wheat or eggs? Not here in Alabama. If I go to a resturant and ask those questions they will look at me like Im crazy or a nuisance. My husband has made it clear he will not be embarrased by my new allergy so he told me just to eat from now on before we go out. I guess thats what I'll do. Im also having to prepare 2 seperate meals for my dh and 2kids and one for me. My son is mad at me because he has more dishes to wash. My daughter told me she would not have any gluten-free dairy free food at her sweet 16 because no one but me would eat it. This is true but it still hurts my feelings. My mom told me to make sure I bring my own food when we come for sunday dinners because well she dosnt want to fool with making sure nothing is in the food I cant eat and my father wont have it!!! I feel like I have leporsy and no one wants to come near me. I almost feel ashamed in some way. I am a retired nurse and I know better I know I have a disease and cant help it but it still feels almost shameful like if I was a drug addict or alcoholic. My dog gave me parasites due to my lowered immunity and my family was accepting of the fact I got sick from them and the medicine used to treat them but when I told them a gluten, wheat, dairy free diet was my medicine they dont really understand or even believe me I think. They act like they dont.

I do not want to be one of those people who you look at and think well they are picky or some health nut. When I went to publix there was no one that could help me. I spent 3hours in that store trying to find something I could eat and came home with 4 items after 3 hours and then 2 of the foods were terrible. I can not abdide any soy taste. It makes me want to vomit so I dont know what Im going to for a yougurt or milk and cheese supplement. Yesterday though I found whole foods grocery. What was a little uplifting yesterday was when I went to the customer service desk at whole foods and she printed the list of foods for me and then walked through the store with me helping me to read food labels. I felt like maybe there is some hope...I think I literally burst into tears 3 times while I was in whole foods because everyone was so helpful and nice to me. Im sure that once Ive been on the diet long enough and get rid of all the symptoms I'll feel better so I'll love it but I have to tell yall right now I just feel like starving myself to death and being done with it. No Im not talking suicide Im just expressing how alone and desperate I feel. Any way thanks for letting me vent and any advice or suggestions on how to cope through the first stages of dx and recovery would be great. Also how long does it take to feel better? I woke up with a killer headache this am and I never used to get headaches? I felt almost hungover like I had gotten drunk the night before.

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<_< First, a big hug. I know what you are going through with a huge exception. I live with my brother and he is usually very helpful. Tell that A-hole you are married to that you will end up with Lymphoma or worse if you do not stay on this diet. If I were you, I would get a refrigerator of my own and make it off-limits to the rest of the family. You can keep your items in there and use plasticware and paper plates for your meals since your husband doesn't want to buy new dishes and pots and pans. Tell him that if he is embarassed about you making a "scene" by asking for what you need at a restaurant, YOU COULD DIE!!! Tell him you are exhausted and he can take over the meals and washing of dishes, clothes, etc. Do you work outside the home? My first inclination was to tell you to leave all of them for a month and go to a spa! Let them deal with preparing meals and cleaning up after themselves. I would NOT :angry: prepare two meals and YOU DON'T NEED TO BE HANDLING GLUTEN!!! Wear a mask and gloves if you must cook for them. I would rebel. Sorry, but this letter infuriated me when I read of your dilemma. The man next to me at work is also Celiac and we are both diabetic as well. When I sent him the link, he said "Man, she has some challenges, as well as being married to an A-hole". We laughed. I wish I had a million to send you and you could just leave for a while to go get healthy. If you stick with it, you will get better. It just takes time. Wishing you all the best. :)

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Yes, they can! I don't know if it's Celiac, but there are dogs who are bothered by wheat, or soy, or any of the things that bother people. And you CAN get gluten-free dog food. That might be a good idea, anyway; one less possible source of gluten crumbs in your house. Although I admit I haven't switched my dog's food yet.

don't know about celiac-dogs... BUT, we discovered that iams eukanuba is gluten-free -- which means that my wife (who has celiac) can handle the dogfood, feed the dogs and not worry about getting licked!

unfortunately, it is still my job to clean the yard.... ;)

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Yes, there are such things as gluten intolerant dogs..... I have two, mixed breeds, one young, one old, that I adopted from the animal shelters, they are related by breed.

One gets really bad ocd- like symptoms when he accidently eats wheat, gets neurotic and has trouble being housebroken. Off of dog food with gluten, he is a regular dog. We think the other half of him that is susceptable is probably border collie or Irish setter, as he acts like one. When he sneaks into the chicken hutch and eats regular chicken food, he gets really hyper, and starts acting crazy, so I also changed the chicken food. I suspect he's also dairy intolerant. For treats, I just give him anything I can that doesn't have gluten, or a brand of wheatless biscuit I found.

The other dog just pukes a lot and gets a real itchy skin condition on regular dog food, so he also eats the same dry food without wheat, and I also give him rice/plain meat/cottage cheese homemade mix that the vet suggested, to keep his weight up. He has no problem with dairy. He has a bit more of a sensitive stomach so he gets lundberg rice crackers for treats. Lundberg rice company would probably be horrified to hear this, but this dog lives for a rice cake with a little cottage cheese on it. Look at the bright side, my household rice cake consumption doubled. I cannot give him much in the way of other people food that I can eat. For instance, I tried a piece of gluten-free corned beef on him after St Patrick's day and that did not work out well for the rug.

When these dogs first started having problems (the one dog with the skin condition was shaved and being treated for hot spots when I adopted him, it didn't phase me to see this, I figured we could figure it out and we did) the first thing I thought of was food intolerance so it was simple to put them on just rice and plain meat and then add in things to see what the culprit was, which is not what regular pet owners will do all the time. I have had dogs with bad allergies in the past to soy, so we already were using soyless dog food. There are a lot of "non allergenic" pet foods on the market now that still won't be "safe" because they may be putting soy or barley into these so- called safe foods, and I wanted something that I didn't have to worry about touching and I don't want doggie kissies that make me react. So a bit of intense shopping research was required. This has made me overall much more tolerant to animal dander, which is good.

But switching to gluten free pet foods makes my life easier besides being good for these 2 dogs. READ THE LABELS if you do this, because you don't want to go to all this trouble and then the stuff contains barley anyway.

_________

As to the original post, I agree with the going to a spa for a month and letting the family ingrates fend for themselves.

I would put my foot down and make them eat all the same gluten-free meal at least 4 nights a week.

They can then do what they want on Fri- Sat- Sun, like fend for themselves. Chances are either your parents or offspring are carrying the same genetics that incline them to it, and may be looking at their own auto immune problems down the line.

There really isn't any excuse for not eating many main dish meals gluten free. I would just go and mail order a big slug of Tinkyada rice pasta now if you like spaghetti, and start from there. Get yourself a new colander, in a pretty color, you deserve it. New toasters are not expensive. Classico brand sauces are gluten free (check the labels) Meat, potatoes, rice, and beans are all gluten free- can you say "Crock Pot ?"

If they're gravy fanatics, make the gravy with gluten free flours and tell them to eat it and get over themselves. You can also use it to bread things with, and then fry or oven- bake it.

Buy a bag of Pamela's all purpose baking mix and follow the recipes on the bag, if you are not a natural baker, and that can be fed to them during the beginning- I'm trying to remember if Pamela's has dry milk in it or not- a small bag might still be useful for the recipes. You might get over the dairy problem if it's only lactose, if you stick to being gluten free. You can also custom make your own baking mixes if you have other allergies- a simple 3 way mixture of rice, potato starch or cornstarch, and tapioca works for a lot of people. Buy a small bag of each and mix them up in a big zip lock and store in the refrigerator. I use a sorghum, amaranth, millet, potato, and almond meal mixture that duplicates whole wheat. I don't eat much commercially prepared gluten free baked items because of the cross reactions problems. The local Whole Foods (about 20 miles away) is a flunk for me on their baked goods dept.

This thread has a recipe I adapted for quick breads, (scroll down) other gluten free flours can be substituted with a little bit of tinkering, and this solves the bread problem, it has olive oil instead of butter, no soy, and does not need dairy:

http://www.celiac.com/gluten-free/index.ph...mp;#entry532088

If you can't find almonds, try pecans or flax meal. That second one in the little cast iron skillet I can get from mixing bowl to table in about 10 to 15 minutes, including grinding the nuts in the blender.

We do have more overall food consciousness here in CA and much more grocery selection because of all the different ethnic groups. My local grocery about 13 miles away carries gluten free items, as do the health food stores 20 miles away. We are in an ethnic pocket of a lot of gluten intolerance here. Plus, eccentricity is expected ! When at the store, I stock up on food items I know are gluten free, such as coconut milk for coffee/tea, and boxed chicken broths that are gluten free, rice pasta, and boxed gluten-free nut milks, all of which can be used for soups, sauces, etc. A well stocked pantry is a tremendous time saver.

Get yourself a little picnic sized personal ice chest to put one of those refreezerable ice packs in, and keep it ready to go to carry your own food with you. Also maybe a dedicated gluten free tote bag full of snacks, that is kept by the door, that you grab on the way out, after you've tossed an apple or banana in it. I pack crackers, rice cakes, peanuts, trail mix, chocolate, lara bars, m&m candies, tuna packs, pepperoni, peanut butter, corn tortillas in a zip lock baggie, etc. This is the easiest way to deal with the travel problem.

It sounds like your part of the country could really use a support group or at least a blog where you could find other gluten free people. I found a Birmingham Celiac support group on the web here http://birminghamceliac.spaces.live.com/

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I was re-reading, and I think I already responded, but I was struck by your wording:

"My husband has made it clear he will not be embarrased by my new allergy so he told me just to eat from now on before we go out."

Maybe your subconscious already knows this - "he will not be embarassed". It's his choice how he reacts to you asking about things. He will or he won't as he will (or won't). If he can't be a big boy, well, maybe he doesn't deserve to be eating in a restaurant. :P

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Ginnybean, the lack of compassion in your family just made me cry. I haven't been on the board much and came on because my daughter went on a long trek to a bakery that makes gluten-free treats along with ones made with spelt. I was up in for hours last night with the consequences--have to call them and try to figure out what happened. So I felt a bit sorry for myself. Your tales of woe with the family really puts my little glutening into perspective. I just wanted to mention that I can now eat dairy, although I sometimes take lactaid for a little extra support. My daughter, who was diagnosed at the same time as I was, couldn't eat dairy for about 4 months and is now eating it. If that happens for you, it will make things a bit easier.

There is an article on Celiac.com re kids with ADHD and gluten sensitivity. It is possible that your son has gluten sensitivity or celiac. Try not to feel responsible if your children do have issues with gluten. You have enough on your plate. Get and keep yourself healthy and hopefully the family will come around.

I know exactly how you feel...I brought up the fact I cant eat gluten wheat and dairy and asked my mom if she could like leave the butter out of some vegtables so I could have some and she basically accused me of being selfish to think she should modify her cooking just for one person when no one else has issues with the food and everyone looks forward to her food the way it is. I understand but it still hurts...she wont mind me bringing my own food but If it werent for my kids I wouldnt bother even going down there for easter this year. She is usually a very kind and compassionate woman but unless your from the south its hard to understand that you just dont mess with a southern womans cooking...

I did find at Whole Foods Grocery some cookies that taste awesome and they are dairy free and gluten free and some are soy free. They are Pamela's brand and I bought the chocolate chip walnut ones...they were really good. Im going back tomorrow because I ate all of them in 2 nights...lol Now if I could find a good milk replacement that isnt so sweet tasting I'll be happy.

Thank you all for all the web sites and recepies...I appreciate you all so much.

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