Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Im Newly Diagnosed And So Angry


ginnybean32

Recommended Posts

ginnybean32 Newbie

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MaryJones2 Enthusiast

Hang in there ginnybean. Most of us had similar feelings in the beginning. It will get better. Your family will also eventually change their opinion of this whole gluten-free thing when they see how much better you feel!

What part of Alabama are you in? Here's a link to the Birmingham celiacs. They can give you a lot of local support: Open Original Shared Link. There is also a group in Huntsville but I don't have their info.

Most grocery stores including Wal-Mart have gluten-free lists. Most are available online just go to their website and search for gluten.

Hang in there!

Link to comment
Share on other sites
tarnalberry Community Regular

Wow... I'd ask your family one question "Do you care more about my health, or what other people think of you? Because your responses to me suggest a very obvious answer to that question, and it's not making me feel very good." I'm very sorry you're going through that!

Link to comment
Share on other sites
mommida Enthusiast

I think we all get angry at different times about Celiac. People do say the most ignorant obnoxious things!!? Seeing things you crave and can not have is pretty unbearable sometimes too. Check out the threads where we talk about sniffing and smelling gluten stuff. :rolleyes:

Sounds like your family support system SUCKS. <_< Maybe you should tell them people at WholeFoods showed you more compassion than they have.

You have been diagnosed with something that is in your CONTROL. You have an on-line support group here. Ask any question you want, if someone doesn't know the answer a research junkie will find you at least 10 links. :D

Some of the gluten free products are NASTY! The makers should be forced to eat their products for punishment. :angry:

Then your taste buds start to change and you find good products. Your health improves and you find yourself giving advice to a newly diagnosed person. ;)

Link to comment
Share on other sites
whitball Explorer

Most of us on this forum have gone through the same feelings that you are experiencing right now. This is a normal reaction and the sadness and anger may be there for awhile until you start to feel better. No doubt, there are times when we stand out in a crowd at a restaurant or at a family meal. Try not to let this keep you from living your life. Your job now is to be your own advocate. Keep yourself safe. Question everything. Don't let other people's opinion or strange looks cause you to feel pressured to eat what they have prepared. They will get over it. For you it is a health and safety issue. Look out for you. Not them. Try not to rush out an buy everything that you can find that is gluten free. I did this and wasted alot of money. Keep it simple for the first several weeks. Fruits, veggies, meats, nuts, dairy (if you can tolerate these) are some things to stick to and will give your gut a chance to heal. Then start adding a new thing one at a time. Good luck and welcome to the forum.

Link to comment
Share on other sites
sugarsue Enthusiast

Oh my heart aches for you. I am so very sorry for the complete lack of support you are getting from your family. I hope someone steps up and educates themselves and becomes an ali so you do not feel so alone. I am feeling angry now at their reactions.

I know things will get easier for you as you adjust to the diet, even if you don't get more support, it will become second nature to you on what you can or can't eat and that will ease the burden some. I hope you do find a local support group. This will help you very much and you will learn about restaurants in your area that are more educated on celiac.

Regarding your greiving for gluten, my 6 yr old went through this as well. She greived hard for it. She's gone through periods of anger and saddness too. As she heals and see's how well she is doing, it is much easier for her to accept and see why it's important for her.

Link to comment
Share on other sites
Amyleigh0007 Enthusiast

You definitely go through anger before acceptance. You need time to let everything sink in. It is overwhelming at first but it does get easier. I felt extreme guilt after my son's diagnosis. I thought I was a terrible mother, that it was my fault, I made him this way and he was going to have to live this inconvenient life forever. I actually went into a mini depression. But, I had to take a step back and look at the whole picture. Now I think his diagnosis was the best thing to happen. He is happy and healthy now. Take this opportunity to educate your loved ones about Celiac. When they see you happy and healthy once again they might change their ways of thinking. Good luck!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sugarsue Enthusiast

Another thought about feeling weird and standing out..... I feel this way any time I take my kids to McDonalds. Of all the places, I figure the service people there won't get it. I mean, who orders a Happy Meal with meat only, no bun? And everyone is in a hurry and listening to everything I say. Then I have one girl who wants the hamburger meat with condiments and one who wants it completely plain. I have to explain the whole thing each time. It took me a few times but now I know exactly what to say to get it right, usually. We can't go through the drive thru any more. It's just to stressful to talk to that box and try to get our order right!

By the way, I hope you go buy your own toaster and tell your husband and kids it's off limits. You've got to have your own space in your house for your gluten free stuff, even if they continue to have their negative thoughts on it.

HUGS, HUGS, HUGS!

Link to comment
Share on other sites
ginnybean32 Newbie

Thank you all so much for your support. I really appreciate it. I am going to buy a new toaster and dare anyone to use it. What about pots and pans? I understand the toaster but cant I just wash my utensils and pans in the dishwasher and be ok? I guess I'll learn. Im going to try to educate my family but it may be pointless in the case of my mom and dad. My daughter I think I can eventually turn around but not the men in my family...Real men eat real food and not that pansy crap. I just dont want to fight this fight. Im so exahusted already from Celiac I just dont want to fight anymore. Well enough...thanks everyone.

Link to comment
Share on other sites
mushroom Proficient

I think your anger is valid and to be expected. This *is* in many ways a life-changing event and one that takes a lot of adapting to, especially when you are not feeling your best. Lack of familial support makes it so much harder, but unfortunately you are going to have to give them tough love. Let them know that your health is the most important thing to you right now, and they are going to have to adapt too. Whatever form that adaptation takes will have to be negotiated with them, but you have to be firm that you must first think of yourself. If they are not with you, they are 'agin' you and making your life more difficult than it already is.

You will, unfortunately, have to develop a thicker hide and not be concerned about standing out in the crowd and wondering what people think of you. This should be the least of your concerns. But to get you started when you go out to eat, try to call ahead and talk to the manager or chef initially, so that you don't have to have this discussion in front of your husband, and arrange for the preparation of your meal gluten-free before you get to the restaurant would be a suggestion. Then when your husband sees it is possible for you to eat out normally with the family he will become more accepting of your condition and maybe not as concerned when you have this little conversation with the waiter about how your food needs to be prepared. People do this all the time (well, maybe not in Alabama, I wouldn't know, but if they don't it's about time they started) :o and it has become accepted that we cannot all eat the same food--think diabetics, vegetarians, vegans, food allergies like peanuts. Most reasonable people do not consider these people nuts unless they act really nutty and unreasonable. And after all, it is not unreasonable to make sure that you don't get sick.

There are, of course, occasions when you do have to take your own food, or eat beforehand and nibble on fruit or some snacks from your handbag because the situation is not conducive to being able to order gluten-free. But these situations seem to be getting fewer and fewer as the knowledge of celiac becomes more widespread. When I fly to the US I just order a gluten-free meal from the airline, and all the special order meals (vegetarian or whatever) are served before the main cabin meal service starts. No one thinks anything of it--in fact people are often jealous that we get served first and they like the look of our meal more than theirs :D

I am 18 months gluten free and I no longer give a darn what anyone thinks. I hope your husband and family can get on board with the program when they see what a difference it makes to you, and be more thoughtful and considerate toward you. You might even try sneaking some gluten-free dishes into their menu without telling them, once you become more familiar with preparing gluten free foods. Many on here will report that their families prefer the gluten free version. I do a lasagne recipe with spinach and mushrooms, onion and garlic with ricotta cheese and bechamel sauce because I don't do tomato any more, and Dh and I both prefer it to the standard lasagna.

I don't do soy either and realize that getting soy- and gluten-free (and dairy-free for you) is a difficult proposition. Try googling online for soy, dairy and gluten free recipes and see what comes up. There are dozens of recipe sites on line with recipes for practically everything, including our own thread on this forum. There are also lots of tips on that thread for substitutions for things like soy sauce and mushroom soup. In Whole Foods you will find, besides rice milk, there is almond milk, hemp milk, goats milk...some people can do goats milk and cheese, others can't. You will just have to experiment and find what works for you and suits your taste buds.

You do have to do more food preparation on this diet, but more and more companies are starting to cater to us. There are gluten-free pizza places, gluten-free fish and chips shops--it is truly amazing. So be of good hope, vent your anger until it goes away (this is a good place because we don't take it personally :P ) and then get on with life. It really will become second nature before you even know it. Sorry this is so long, but I thought it might help.

Link to comment
Share on other sites
sugarsue Enthusiast
You will, unfortunately, have to develop a thicker hide and not be concerned about standing out in the crowd and wondering what people think of you. This should be the least of your concerns. .......

People do this all the time (well, maybe not in Alabama, I wouldn't know, but if they don't it's about time they started) :o and it has become accepted that we cannot all eat the same food--think diabetics, vegetarians, vegans, food allergies like peanuts. Most reasonable people do not consider these people nuts unless they act really nutty and unreasonable. And after all, it is not unreasonable to make sure that you don't get sick.

Yes! My sister's son is allergic to peanuts and she marches right into the restaurant and says "My son had a deadly peanut allergy..." and they talk about the options. My Dad used to have a hard time with everything my sister did to keep her son safe. But he's on board now. It just took a little while.

OK, I'm not a gluten free stalker :lol: since I've already posted 3 times to you but your story had touched me ginnybean and I'll be thinking of you.

Link to comment
Share on other sites
FarmCat Newbie

Ginnybean,

I am pretty new here myself, but I wanted to join in and welcome you. I am so sorry you are getting so little support from the people around you. I hope they will come around eventually. In the meantime, you can always come here and people will understand.

I wanted to touch on a couple of things from your first post. You mentioned having headaches and never having them before. There is actually such a thing as gluten withdrawal. A number of people say that they have trouble at first. The major symptoms seem to be exhaustion, dizzyness and headaches. Hang in there; you should feel better soon.

As for new pots--as I said, I'm new to this myself, so if I am wrong, I hope the experts here will gently correct me. But pots and pans should be okay UNLESS they have a non-stick coating that has scratches, because the scratches will trap the gluten. Otherwise, if washed thoroughly, they should be fine.

You do, however, need to get your own, dedicated, gluten-free cutting board. Again, because the scratches can't be washed well enough.

One last thing--maybe this will help your search for gluten-free, dairy-free foods. This is a store near me in Wisconsin: the Gluten-Free Trading Company. Open Original Shared Link Everything in the whole place is gluten-free, and a lot of it is dairy-free. They mail-order :-)

Hugs to you, and again, welcome.

Link to comment
Share on other sites
ginnybean32 Newbie
Ginnybean,

I wanted to touch on a couple of things from your first post. You mentioned having headaches and never having them before. There is actually such a thing as gluten withdrawal. A number of people say that they have trouble at first. The major symptoms seem to be exhaustion, dizzyness and headaches. Hang in there; you should feel better soon.

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.

Link to comment
Share on other sites
FarmCat Newbie
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?

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.

Link to comment
Share on other sites
pele Rookie

Hi ginnybean and welcome

I am one of those people who was so relieved to figure out that gluten was the problem that I was thrilled to quit eating it and have never looked back. However, I can identitfiy with some of your other issues.

Your family needs to learn that this is a serious health issue for you, not a fad or choice. I suggest ordering a copy of Dr. Peter HR Green's book Celiac Disease: A Hidden Epidemic and reading it aloud to them. You could also try to get them to watch the UCSD video on youtube at

Open Original Shared Link

Celiac disease and gluten intolerance do not know socio-economic or geographical boundaries. The percentage of folks with the problem is the same in Alabama and LA. If you can't find like minded folks nearby, we live in the internet age, so you can just come here and check in with us. We're happy to talk about it.

Celiac runs in families, so chances are, those grumpy relatives of yours have it, too.

Try to develop some menus that are naturally gluten-free. Meat. chicken or fish without breading or flour, vegetables, potatoes, corn tortillas, rice. Eggs and fruit for breakfast, tuna salad for lunch. Take your own food to family gatherings and eat it with a smile and a laugh. They'll get over it.

Toasters aren't the only items that need to be separate. You also need your own stick of butter, jars of peanut butter, mayo, jelly and so on. I bought some brightly colored stickers and put them on the things that must stay gluten-free. I also have a gluten-free counter area, a gluten-free shelf in the fridge and gluten-free shelves in a cupboard. I always check dishes and silverware for gluten residue before using.

It's actually really easy to make things like brownies and chocolate chip cookies gluten-free. Make them and they'll get eaten.

I hope that as your family sees you sticking to the diet and sees your health improve, they will become very supportive and go out of their way to protect you from accidental glutening.

Link to comment
Share on other sites
lonewolf Collaborator

Ginnybean - welcome. I'm sorry you're having a tough time with this. It is normal to feel angry and sad at first so go ahead and grieve and vent. You'll get to the point where you see your diagnosis as a positive thing, but it might take some time.

Maybe you could tell us what kind of food you usually eat at home and we could give you some ideas on how to make your "normal" food gluten-free. That's whats worked the best for me. At first it was just me gluten-free and I tried to make my food and their food. I have 4 kids and a husband and it was hard. I got to the point where I just started adapting most recipes and making it all gluten-free. I was strictly dairy free for over 10 years (egg and soy free too) and it was a challenge, but we all adapted well. Now, 2 of my kids are also gluten-free so our whole house eats only gluten-free at home.

Everyone here is very supportive and lots of people will be willing to help you, so keep coming back.

Link to comment
Share on other sites
ginnybean32 Newbie
Ginnybean - welcome. I'm sorry you're having a tough time with this. It is normal to feel angry and sad at first so go ahead and grieve and vent. You'll get to the point where you see your diagnosis as a positive thing, but it might take some time.

Maybe you could tell us what kind of food you usually eat at home and we could give you some ideas on how to make your "normal" food gluten-free. That's whats worked the best for me. At first it was just me gluten-free and I tried to make my food and their food. I have 4 kids and a husband and it was hard. I got to the point where I just started adapting most recipes and making it all gluten-free. I was strictly dairy free for over 10 years (egg and soy free too) and it was a challenge, but we all adapted well. Now, 2 of my kids are also gluten-free so our whole house eats only gluten-free at home.

Everyone here is very supportive and lots of people will be willing to help you, so keep coming back.

Thank you so much. I hope my family will turn around. I suspect my daughter may have celiac due to all her stomach aches and bowel troubles so I will get her tested and my son is ADHD and Autistic so I am also going to get him tested. My husband wouldnt get tested if I paid him. He will not change his food for anything so he is my main obstacle. 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.

The stuff I love to eat like bagels and cream cheese I cant do. I found a gluten-free bagel but it has dairy or soy in it. I found a non dairy cream cheese to try but dont have a bagel to put it on. I loved my organic yogurt with granola mixed in. I found a cocunut milk yogurt I like but I cant put granola in it anymore. I loved good bread. Sourdough loaves cut for sandwhiches. I found casein and gluten-free turkey at whole foods but no luck on a non dairy version of Havarti cheese. Ohhhh I will miss my dairy the most I think...I love all kinds of cheeses esp on crackers. Cottage Cheese with fruit I will miss very badly. No more of either of those. I have tried one kind of rice cracker and it was awful...I'll keep experimenting at least until I run out of money..lol

It is sooooo expensive. I bought a gluten-free dairy free brownie mix yesterday to try and it was $7.00. A 9 count package of cookies which were actually good cost me $5.00. I just cant believe the prices...Im grateful my hubby and I do well finacially or else Id just be stuck eating meats, fish, veggies and fruits. That would get so old after awhile. I have bought lots of baby spinich grape tomatoes, mushrooms, peppers, dates and walnuts to make salads I can munch on. I just miss the blue cheese dressing so bad.

Ive always been a raw veggie snacker...so are my kids...I keep carrots cauliflower and brocclii in the fridge at all times I just cant dip them in ranch anymore. 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 did find a box of rice cereal I will try in the am with some fruit and see how that tastes. Can you eat grits? I dont think we can can we? Another favorite gone.

Cooking supper wont be too bad as long as I am not frying anything. I still have to go through my marinades and check those. I always have a meat a veggie and a starch. So it wont be too hard to make a gluten free supper as long as I dont forget to not put butter in the sides. Dinner rolls will be hard because I could not find one brand of dinner rolls or biscuits that didnt have dairy or soy in them. So I'll have to smell them and suffer. Maybe one day I'll learn to bake...I really hate baking its just not my thing...one of the big reasons Im angry. Now in order to get any kind of bread I can eat I"ll have to make it myself. Arrrrrggggggg

My biggest sadness is missing birthday cakes. My mom makes the best cakes youve ever had in your life. People from church and everywhere beg her to make their birthday cakes and now I'll never taste one again. Everything is from scratch even her awesome icing but its made from butter so I cant have it. And my birthday is coming up at the end of April and I will have no cake from my mother for the first time in my 35yrs. I just dont see a way she could make it gluten-free dairy free and soy free and it still come out tasting the same so why bother. I told her dont worry about it this year and she seemed well relieved to say the least.

I'll call some bakeries and see but it wont be the same as my moms and that just plunges that knife in a little bit deeper ya know? I may just not bother no one would touch it but me anyway. Itd be a waste of money. Oh well....Well thanks for any suggestions you can give. I appreciate them.

Link to comment
Share on other sites
ranger Enthusiast

I'm pretty new at this too, but have shed some of my resentment. I hope your family comes on board for you- it makes it a lot easier. At first, my family was not that supportive, but now , they are and I think part of that was my attitude. This is my health and I will take care of myself, no matter what! I've had to almost relearn to cook, but I do not fix separate meals for me and my DH and he is quite happy with our food. We eat pretty much as we did before - from meat, potatoes, and veges to lasagne or chicken pot pie. I bake pies, cookies, and cakes. When we go to family gatherings, I take my own food. oh - buy yourself a toaster. Get rid of any teflon. Chuck the old plastic storage containers. Buy a new cutting board. It does get easier! By the way, my B-day is Mon. Every year, my DH made me a cake ( he doesn't cook so thank God for Betty Crocker) This year, It' just too hard to make a homemade gluten-free cake, so we're off to the health food store to try to find something. It's the only thing he does for me - I can't give it up! Good Luck!

Link to comment
Share on other sites
maile Newbie

Hi ginnybean32,

I think your story would touch anyone's heart!

lonewolf had a great idea about adapting your everyday food here's a couple of suggestions from your post:

The stuff I love to eat like bagels and cream cheese I cant do. I found a gluten-free bagel but it has dairy or soy in it. I found a non dairy cream cheese to try but dont have a bagel to put it on.

use the dairy free cream cheese and put it on celery or gluten-free crackers, frankly I find the gluten-free breads horrible so I just don't eat them but crackers seem to be okay.

I loved my organic yogurt with granola mixed in. I found a cocunut milk yogurt I like but I cant put granola in it anymore.

how about a nut granola? you didn't mention any allergies or intolerances to nuts, there's a great recipe here: Open Original Shared Link there's not a lot of "baking" for this recipe and it tastes very good! actually I'm envious that you can get coconut yogurt, it's not up here yet in Canada

I loved good bread. Sourdough loaves cut for sandwhiches. I found casein and gluten-free turkey at whole foods but no luck on a non dairy version of Havarti cheese. Ohhhh I will miss my dairy the most I think...I love all kinds of cheeses esp on crackers. Cottage Cheese with fruit I will miss very badly. No more of either of those. I have tried one kind of rice cracker and it was awful...I'll keep experimenting at least until I run out of money..lol

have you tried versions of these cheeses made with goats milk? many people who cannot tolerate cows milk can do goats (my son was allergic to dairy and lactose intolerant so we learned) I find that the cream cheese, feta and cheddar versions are quite good.

Ive always been a raw veggie snacker...so are my kids...I keep carrots cauliflower and brocclii in the fridge at all times I just cant dip them in ranch anymore. 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 did find a box of rice cereal I will try in the am with some fruit and see how that tastes. Can you eat grits? I dont think we can can we? Another favorite gone.

okay, had to look up what grits are (sorry about my Canadian ignorance :lol: ) but it looks like it's just corn no? if so then as long as you are not sensitive to corn then go for it, I'm Italian and we have a similar dish called polenta and I can eat that no problem.

My biggest sadness is missing birthday cakes. My mom makes the best cakes youve ever had in your life. People from church and everywhere beg her to make their birthday cakes and now I'll never taste one again. Everything is from scratch even her awesome icing but its made from butter so I cant have it. And my birthday is coming up at the end of April and I will have no cake from my mother for the first time in my 35yrs. I just dont see a way she could make it gluten-free dairy free and soy free and it still come out tasting the same so why bother. I told her dont worry about it this year and she seemed well relieved to say the least.

This is the one place that it might be worth while to learn how to bake, maybe not for this years birthday, it might be overwhelming, but if you want something special for that day I found a wonderful, super easy recipe for dark chocolate brownies that I have successfully served to non celiacs who raved about it (credit for the recipe goes to the glutenfree goddess site, I just played with it a bit)

as the others have said you've found a great place for support. Welcome aboard!

Link to comment
Share on other sites
home-based-mom Contributor

Try some of the bread or cake mixes from Pamela's or Gluten Free Pantry. The ones I have on hand do not contain dairy or soy and either do not call for them to be added or have alternate directions. They are not your mom's but they are good. Pamela's chocolate cake is excellent and even better if you add chocolate chips. ;) If you can't find them locally they can be purchased online.

It's a good idea to educate your family about celiac. It's important for them to understand that untreated celiac is fatal, and it's a slow painful death, just as death from a lifetime of smoking is a slow painful death. Washing a couple of extra dishes is a small price to pay for a healthy mother. Hopefully your kids will come to understand this.

Link to comment
Share on other sites
Ruth Enthusiast

I know it sounds trite, but it really does get better. Everyone goes through some level of anger/sadness for having to drastically change their lives. I've cried in the supermarket, mall (looking for makeup), the hairdresser (after they doused me with some hair product containing wheat) No doubt...food is so prevalent in everything social. Its been 6 years for me, and I still get the "why me" /"why my kids" feeling every so often... then of course I remind myself how lucky we actually are.

As for your family, they will come around. Make a pan of Gluten Free Pantry's brownie mix (I believe there is a diary free version on the box). Don't eat them in front of your family...let them have them thinking they are "regular" They will love them. They will then start to realize that gluten-free/DF doesn't always mean gross food. Also... have some regular food that is gluten-free... sometimes it's junk... but at least it makes you feel a bit "normal" (Ice cream, Smartfood, Lays Chips)

Some of my kids' friends like the gluten-free brownies I make better than regular ones... also the kids at school always want the Glutino pretzels that my kids bring in... even though it's expensvie, I always send in some extra, it feels good for them to be able to share.

Some family/friends will never get it.... that's the hardest part.

Post again... let us know how things are going.

Link to comment
Share on other sites
lonewolf Collaborator

Hugs to you. I do remember how hard it was at first. No one in my husband's family was supportive at all and we live no more than 2-1/2 miles from his parents, sisters and brother and their families. It got better after a couple of years and now my 2 sister in laws are very supportive. My MIL still doesn't get it and doesn't care and my BIL's wife doesn't pay any attention. I've learned to cook and bake everything I want and it's gotten easier.

Dairy is harder for me to avoid than gluten. Did your doctor tell you to go off dairy permanently or just for a few months until your digestive system heals? Many Celiacs need to avoid lactose or most dairy for 3-6 months and others need to stay off of it. I avoided all dairy for years and am now at the point that I can eat butter and small amounts of sheep or goat milk cheeses. What about the soy? Did your doc tell you to eliminate that as well?

I wish I was closer to Alabama and I would make you a birthday cake. Chocolate is the easiest and there's a really good recipe that I got off of celiac.com and modified just a bit. Hopefully you'll be able to experiment and have some success. I use my own flour mixture and often use "regular" recipes from Betty Crocker.

Maile gave you some good specific ideas. I'll add a few here too.

Grits are not gone! We love them and my 16 yo daughter makes them several times a week. They're just corn, so they're safe.

Some good family dinners that we all enjoy are 1) Roast chicken with sweet potatoes (or some type of regular potatoes), green beans and salad. Bread on the side for the gluten eaters if necessary. 2) Steak, marinated in Italian dressing and grilled on the bbq along with baked potatoes and salad. 3) Pasta - you can make two batches of noodles, but have one kind of sauce. We like Ener-G Foods Lite Tapioca Bread grilled with olive oil and garlic powder, but you could skip the bread and just have a vegetable and salad. 4) Grilled chicken and vegetables (peppers, zucchini, onions) on the bbq and r ice for a side. 5) Pot roast with potatoes and carrots. The list could go on and I'll send you more ideas if you'd like. Dinner is actually the easiest meal to make gluten-free. I even used to make yummy pizza with all kinds of toppings for me, just no cheese. Everyone else had cheese on theirs, but mine was still good.

The Bakery on Main has a pretty good gluten-free granola. If you're anywhere near a Trader Joe's they sell it for a good price. I'm sure you can order it online. Glutino crackers are the best that we've tried. They also have good pretzels. I think they have soy lecithin in them, but that doesn't bother me and is usually safe for people who are sensitive to soy.

I used to love cottage cheese and fruit too (sob...). One of those things that you'll have to grieve and then get over.

If you have a Betty Crocker cookbook you can try making the brownies and just substitute gluten-free flour. I just made them last weekend and they turned out great. Very easy. You can buy premixed flour - people on here seem to like Tom Sawyer brand and a few others that hopefully someone will post. I like to mix up my own. I use it to make cakes, cookies, pancakes and muffins following all my old recipes. I do add a bit more liquid sometimes, but no major changes. Here's my flour mix:

3 C brown rice flour

1 C potato starch (NOT flour)

1/2 C tapioca starch

2 tsp. xanthan gum

Sift everything together 3 times to make sure the xanthan gum is well mixed in. Use for all purpose flour, but not in yeast breads.

Rice Chex and Corn Chex are now gluten-free. Just look at the box to make sure that it says Gluten Free right on it. The Corn Chex are newly gluten-free, so there are still old non- gluten-free boxes on the shelves. We've also had good luck with Honey Kix, Dora the Explorer (not often, but for an occasional treat) and Envirokidz Panda Puffs and Gorilla Munch.

Pamela's Amazing Gluten Free Bread Mix is the best that I've found. You can order it by the case from Amazon . com. Follow the directions on the package exactly and it will turn out delicious. Even my husband and 2 non gluten-free kids love it. One loaf gets eaten before it cools down.

I hope your mom comes around and becomes supportive for you. My mom finally did and occasionally bakes cookies for the kids and me. She was surprised at how easy it was with the right flour mix. You can make a delicious birthday cake (I make white cake sometimes too) by using rice milk and oil. After a few tries I got it good enough that I now serve a bunny shaped cake to company at Easter. Everyone loves it and it's a simple recipe made with "normal" (shortening, not butter) icing and coconut.

If you PM me and send your email address I'll send you a file with 25 gluten-free recipes. Everything from cookies to salsa to main dishes.

Keep looking for ideas and support - you'll make it!

Link to comment
Share on other sites
LDJofDenver Apprentice

You will get a lot of empathy here on this site, that's for sure. We've all been there, just varying degrees of frustration. I'm sorry your family is not on board, some folks just don't grasp the seriousness of it.

First, life will take an immediate turn for the better when you don't stand in the grocery aisle and read labels for 20 minutes per product! Go to this link and get this mainstream grocery shopping guide, it is a life saver. It's about $25 and worth every $:

Open Original Shared Link And many grocery chains have a gluten free shopping list, you'll have to search online and find the customer service number (or email addr), but you'll be surprised how many of them have lists. Lots of food companies also offer gluten free product lists - if not already available through their website (Kraft, Heinz, etc.) you can email them and request it.

Many mainstream products ARE gluten free and are beginning to label as such (many Progresso soups, Stagg chili, Classico spaghetti sauces, hormel products). It will get better.

One thing I've done with the restaurant problem (we always ate out once or twice a week) is to go on an off-night and early, so there's time to ask questions and not feel like a spectacle. I now have favorite and safe menu choices at both our favorite Italian and Mexican restaurants, and a few other places we frequent. Or, call restaurants you frequent and talk to them before you go, find out in advance what choices you'll have when you get there.

Good luck to you. Trust me, things will get better.

Link to comment
Share on other sites
ginnybean32 Newbie
Dairy is harder for me to avoid than gluten. Did your doctor tell you to go off dairy permanently or just for a few months until your digestive system heals? Many Celiacs need to avoid lactose or most dairy for 3-6 months and others need to stay off of it. I avoided all dairy for years and am now at the point that I can eat butter and small amounts of sheep or goat milk cheeses. What about the soy? Did your doc tell you to eliminate that as well?

I wish I was closer to Alabama and I would make you a birthday cake. Chocolate is the easiest and there's a really good recipe that I got off of celiac.com and modified just a bit. Hopefully you'll be able to experiment and have some success. I use my own flour mixture and often use "regular" recipes from Betty Crocker.

Thank you all so much for helping. This is all so overwhelming and confusing so I am soooo appreciative for you help.

My doctor told me to avoid all dairy but he didnt say for how long. The reason why is I got malabsorbtion problems from Celiac. I really had it bad...I was soooooo sick. In bed since November only leaving the house when I had too...Im nowhere near recovered but feeling a little better. Ive been able to stay out of bed now for 2 days so thats exciting...I just want to avoid any dairy and gluten of course so I will continue to improve. Hopefully I will be allowed to eat dairy again one day but for now I have to make sure there is no dairy in any of my food. Thats whats so hard about finding things to eat like cakes cookies or breads and bagels...If they are gluten free then they have dairy in them...

My cooking is always been pretty simple. I microwave my veggies or steam them in the steamer and cook my meat on the grill or flavorwave. I never try to cook anything complicated because well I stink at cooking and forget baking. I can screw up a simple cake mix where you add just eggs and oil...and well Ive always hated cooking...I really do..so this is extra hard because I will have to cook just so I can eat something different from the everyday vegs, fruit, fish and meats. I am glad I can have grits but I have to find some that have not been processed in a facility that uses wheat, gluten or dairy due to cross contamination. Ugggggg soooo frustrating.

I will try the resturant idea I just have to somehow call them in advance or something so I dont "embarrase" my husband....I know I should tell him to take a hike and kiss my butt but until I was dx with this beast I too did not care to sit there and listen to people ahead of me in line make sure their food was allergy free. I thought if they are so worried about what is prepared with what ingredients then they should just stay home and cook for themselves. Mainly I felt this way when I was in a hurry and it would take longer for them to order their foodI know that is a mean way to think but I did so I do understand my husbands frustration. I am now being educated and will have to educate him if I can.

Link to comment
Share on other sites
MaryJones2 Enthusiast

Hi ginny,

Here are a few links to products you mentioned in your posts that are gluten, dairy and soy free (and quite tasty to boot):

Dairy-Free Bagels - Open Original Shared Link (The english muffins make great hamburger buns)

Rolls - Open Original Shared Link

Granola - Open Original Shared Link

Grits - Open Original Shared Link

Cereal - Rice Chex

Crackers - Open Original Shared Link

Amy's Kitchen makes quite a few frozen entrees that are gluten and dairy free (can't remember if they're soy free too).

I wish I could help you on the cake. I'm a good southern girl too and I will always miss my mother's cakes. There are many awesome gluten-free cakes but there was something about that one that I can't replace!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    2. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    4. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    5. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
×
×
  • Create New...