How Celiac Disease Has Changed My Life

[cgilsing]

I haven't been on this site in forever, but 4-5 years ago I was on here a LOT. It all seemed so overwhelming at first and this site helped me learn the intricate details of living with celiac disease and introduced me to a lot of great people who I could relate to. As time went on, living with celiac disease became second nature and I spent less and less time here.

I realize that there are many people here right now that feel the way I did a few years ago. I was just thinking about how easy it was at first to dwell on the negative (because that was all there seemed to be) in regards to my new lifestyle. It was downright depressing.

As time has passed though, I now realize that celiac disease has actually enriched my life in ways I never could have imagined! Not only am I healthy now, but I also have a new passion for cooking. It is truly one of my great loves I've tried things that I never would have if not for celiac disease. I've ate Thai food, and I've cooked Ethiopian food (even fermented the teff right in my kitchen!). I learned Italian (albeit very broken) because I was scared I'd be glutened on my trip if I couldn't communicate. My husband and I have met some GREAT friends who own a restaurant in our town because we were always asking about gluten-free. I live healthier than I ever would have because I'm now knowledgeable about what I eat.

When you are faced with such a huge lifestyle change as going gluten-free it is very scary, but I want everyone who is just starting out to see that it can really be a huge blessing in disguise. Really, at this point my diet is just second nature. I don't even really think about it. The lasting effects of it have been nothing but positive.

Could any of the other people who have been living with celiac disease for a while add to this how celiac disease has positively affected your lives?

[lizard00]

I think your post is great!

Celiac has affected me in many of the same ways. I am much more knowledgeable about what I eat, and I eat so much healthier than I used to. I also learned that I love cooking, too. I've tried to cook things that I was scared of trying before, like Indian, Thai, or Chinese. I feel better overall, I'm sure because of being gluten-free, but also because I just eat so much better.

I've also learned so many things about health in general, which is a great asset for my career. I've learned a lot about different disorders, vitamins and how they affect your health, and so much more. I feel a lot more educated that I did just a year or so ago.

[ang1e0251]

I feel the same. At a point in my life when I could have been stagnant, I started a new business then celiac disease found me. As a result I'm healthier than I have been in 30 years. I finally have answers and look forward to a bright future.

Feeling better was huge to me. I really felt I was missing out on life and was aging before my time. I was!! I would not go back. I've had to find a courage I only suspected I had. I've had to face weird situations and it wasn't as bad as I thought it would be. I can be thankful I don't have other diseases much more debilitating than this.

I also am feeling good about helping others. In our local paper, we have a column called the "Good Neighbors". You can ask for recipes, song lyrics, long lost friends, give away things you no longer need... all kinds of things. Someone submitted questions about celiac disease and I sent in an answer. Certain people come see me in the flower shop because they know I might be able to find answers to their questions or send them in the right direction.

I'm pretty self reliant but my DH helps me look our for myself. I think he likes to be my protector. He's always looking out for my food. He manages a group home for mentally handicapped and a patient was dx'd with celiac disease. He knew just what to do. So it even helps him in his work.

I look at it as a big positive.

[cgilsing]

ang1e0251 -

You mentioned how your husband looks out for you. I'm lucky enough to have a husband that is the same way. No one has seen the transformation in my health like he has, and he knows how important it is that I stay away from gluten. He is a skilled label reader and knows all the right probing questions to ask at restaurants I should list that as another positive of celiac disease. I'm reminded often of what a great guy I have.

[foodiegurl]

This is a great thread, and really gives me a positive outlook since I am only on week 2!

Thanks for putting this together!!

[Shanmegjilal]

I just started the diet 1 mnth ago and am finding it very difficult and discouraging right now.What a HUGE lifestyle change.I have a husband and children who eat "regular" food and I'm trying to keep it normal for them and gluten free for myself.I end up skipping meals sometimes because it's too much of a pain to look everything up,etc.We used to love to eat out once a week now I just get nervous and don't really want to.I pray that I can accept this but it's so hard.I even get nervous when invited to someone's house for a "get together" as I don't want to single myself out and look like a picky eater,etc.....Thank you for this encouraging post.I hope someday it will be me writing this!!!!

[ginnybean32]

I just started the diet 1 mnth ago and am finding it very difficult and discouraging right now.What a HUGE lifestyle change.I have a husband and children who eat "regular" food and I'm trying to keep it normal for them and gluten free for myself.I end up skipping meals sometimes because it's too much of a pain to look everything up,etc.We used to love to eat out once a week now I just get nervous and don't really want to.I pray that I can accept this but it's so hard.I even get nervous when invited to someone's house for a "get together" as I don't want to single myself out and look like a picky eater,etc.....Thank you for this encouraging post.I hope someday it will be me writing this!!!!

Me too!!!! I posted a thread last night about how angry and upset I was to get this dx. I am grieving the loss of gluten wheat and dairy as if someone died. I literally cried like a baby when I went grocery shopping for gluten-free and dairy free items right there in the store thankfully I was in whole foods grocery and the people who worked there were very kind and compassionate. One girl who worked there said she has seen many Celiacs like me so she completely understood and went out of her way to help me find stuff I can eat. My family at this point is not supportive so I too have just skipped meals so I dont have to deal with their fussing. My dh is really my biggest problem. He made it clear he will not go to "heath food type resturants" or be embarrased by me at a regular resturant so I dont think I will even go out to eat anymore. Im praying they will come around eventually but I dont think he will. I live in the South and most men here are mans man types. No sissy health food will ever pass their lips. Your a pansy if your not a meat and potatoes man.

So I have to suffer in silence or get a new family. I think I would get a new family if I had enough energy to train them..lol...other than food issues with my family I got them trained well. Thanks for this thread it does give me some hope.

[cgilsing]

Shanmegjilal & foodiegurl,

It really does get a lot better. You will never get away from reading labels all together, but I would say I don't have to read the label on 95% of what I eat. I just know what I can and can't have, what brands are good and what aren't. I haven't had an accidental glutening in 6 months or so either (and I'm very sensitive).

As far as eating out and eating at friends houses go, that also gets easier! Your friends will all eventually understand you have special needs (even though they won't totally understand your diet). We have found that we usually get a call from the hostess before we come over asking about what I can and can't have. Your families will end up being as skilled as you are at gluten-free as well.

There are a LOT of restaurants with gluten free menus these days too! Chili's, Outback, Biaggi's, PF Chang's and even Hardee's are great places to find gluten free food. Just ask! Oh and Shanmegjilal, gluten-free doesn't equal deprivation. My family eats gluten free right along with me! I just cook meals that are naturally gluten free or that I can easily substitute ingredients such as rice flour in. Another good tip for eating with the family is to have some Tinkyada pasta, rice flour, and nut thin crackers on hand. Those are all very good products and your family will never suspect they are eating gluten free. The only non gluten free products I buy are sandwich bread and dinner rolls. You have enough to deal with right now. You shouldn't have to double your cooking, witness things you want, but can't have, and risk accidental glutening. If you would like, feel free to e-mail me and I'd be more than happy to help you build some meal plans

[cgilsing]

ginnybean, I'm really sorry that your family is giving you such a hard time about this. It is not something you chose, and your husband should understand that. Does he understand that gluten free isn't a vegetarian diet? If I was you, I would make it perfectly clear to him that he is going to be finding his manly self in the kitchen cooking his own dinner if he can't be more supportive. After all, meat and potatoes are both gluten free anyway!

[sbj]

I live in the South and most men here are mans man types. No sissy health food will ever pass their lips. Your a pansy if your not a meat and potatoes man.

ginnybean: Hang tough! A 'meat and potatoes' diet is perfect for someone with celiac! You should be able to find a nice steak house that you can both enjoy. Visit a Wendy's with him and while he has a triple cheese you can order a baked potato and chili.

You don't need to go out to health food type restaurants to eat gluten-free. In fact, I used to eat at a great vegan restaurant that I can no longer eat at because most of the 'meat' was gluten-based. Once you get used to this diet - give yourself a couple of months - you'll find that it is not so difficult. Go ahead and be angry in the meantime. Frankly, I'm still pissed that I can't eat a decent hamburger or pizza - I don't think I'll ever get over that. But remember that there is a lot - and I do mean lots and lots and lots - of food that you can still eat.

[Wenmin]

I guess my situation was a little different. When I was disgnosed (self-disgnosed with the help of my OBGYN), I was happy as a clam not to be suffering any longer. For 5-7 years I had the most terrible chest pains, heart palpatations, nausea, muscle pains, mood swings, etc. etc. etc. When I decided to go gluten free I started feeling better right away. Therefore, when diagnosed I was estactic! I couldn't believe that I could feel so great. My mom stood by me through it all because she was the person who would help when I wasn't feeling so well. The week I was disgnosed, July 2008, my family was told of the situation. Sometimes, they still say and do things that upset me, but they don't mean any harm.... I dove into this diet head first looking for recipes, ingredients, support, etc. I have found that I can still eat lots of "Cajun" foods and not be glutened. (tonight its boiled crawfish with all the fixins, minus the crackers) Sometimes, it upsets me some to know that I will not ever get to eat some things out there, but I know I would make me feel really bad and decide that I am better off without it.

[psipsina]

I was pretty upset when I was diagnosed 3 years ago. Though at the time I was desperate to figure out my symptoms which at least forced my hand in trying the diet. At the time I was a waitress and had to constantly be surrounded by food I couldn't eat (there wasn't a single safe dish for me at the restaurant!!). My friends and family were sooooo supportive which helped. My best friend did the diet with me for the first two weeks and we cooked meals together, shopped together etc. My husband has been super supportive. For the longest time he wouldn't eat anything in front of me that I couldn't have and we make our whole kitchen a gluten free haven. He doesn't even drink beer so he can kiss me! It took my extended family some getting used to but even they have gotten on board. We took a family vacation and we only went to restaurants that sounded confident in their ability to handle gluten-free even though that meant not going to places others wanted to go to. When I visit my family will have bought my gluten-free waffles and sandwich wraps and gluten-free cold cuts before I get there What I found most helpful with family was explaining some of the long term side effects of me getting constantly glutened, like GI lymphoma. Once they got it thru their heads that I wasn't being picky, that it was literally a life or death issue for me they got on board.

I agree with the OP that in the long run being gluten-free has made my life so much better. I eat soooo healthy now and really take good care of my body which I wasn't doing before. I've learned to cook from scratch and have found so much joy in the process. I feel so much better on a day to day basis than I had in years and years. And now that I have a routine its rare for me to even have to put thought into it. I keep some think thin bars or lara bars in my purse or my backpack to make sure that I always have something to munch on so I'm never tempted to eat something questionable. I bring my lunches to school with me and most of my friends who are eating the cafeteria garbage are jealous of my meals. I learned to make so many things that I would have never dared to try if I could just go out and get them pre-made. And I've tried so many different things that I would have been intimidated by before, I have really extended my palate. Anywho I wanted to join the chorus that a few years out it does indeed get alot better.

[mommida]

cgilsing,

I'm so glad you popped back on! I wanted to try and tell GinnyBean the positive things she will find on this Gluten Free journey. You did that the way I couldn't.