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Dealing With The Changes

Tutahl75

By Tutahl75
in Coping with Celiac Disease

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Tutahl75 Apprentice
Tutahl75
Posted

Hey,

I've been Gluten Free for over seven months now. It used to bug the hell out of me dealing with the changes associated with the diet. I became very sensitive to all walks of my life. I've had some positive changes in my life recently that have helped me cope. I do still get into ruts however (re-occuring symptoms, tension, sleeplessness).

Would anyone share their coping strategies with me. I'd like to hear some different perspectives on lving and dealing with the changes in their lifestyle due to Celiacs.

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Nadtorious Rookie
Nadtorious
Posted

Isn't it such a pain sometimes? You envy anyone that can eat whatever they want and not have to think about it. :D

I was diagnosed with celiac disease over 2 years ago and I'm still not quite comfortable with it yet. I'm also incredibly hypoglycemic, so I really have to watch what, when, and how much I'm eating.

I think I've become kind of detatched from food at this point. I'm a very active person, so when I'm hungry, the question isn't "what sounds good". I try to eat foods that will give me sustained energy, without doing any harm to my body. I've found that having a significant reason to stick with such a disciplined lifestyle has made it a lot easier. I used to cheat-now I know the consequences will be sitting in my house and feeling sorry for myself. I feel like a "normal", 100% human being when I stick to the diet. This has been enough reason for me.

Good luck-

Nadia

Professor Rookie
Professor
Posted

I've been diagnosed for 10 years now, and have good years and bad ones. I am having a tough year (just tough in dealing with it) now, although the two before it were fine. Wonder why . . . ? Maybe because I can no longer do dairy, soy, and eggs? Really feeling the limits of diet.

Anyway, I liken it to a 12-step program (no, I'm not making light of alcoholism, which is obviously a far more serious problem than celiac disease), but meaning it's just "one day at a time" for us. Wish I could say that after a while you get used to it and then it's all downhill. :( Also, whenever I change or expand my social or work circle (new job, for example), I have to keep facing all the issues I did at diagnosis all over again. Tired of it all. :P

Well, that's why we have this place, right? At least here there's a group of people who "get it." :D

Hang in there! ;)

Patty

(I live these little faces -- can you all tell?!? :D )

KaitiUSA Enthusiast
KaitiUSA
Posted

I've been gluten-free for a little over a year now. I feel a lot better but yes there are some tough days I have to deal with. I take vitamins, enzymes, and probiotics regularly. Those things hep to boost my immune system... celiac is an autoimmune disease and our immune systems tend to be weaker. I notice when I miss a day having these supplements I pay for it the next day. I guess my body needs the extra support.

The longer I have been off of gluten the more reaction I get when I have gluten now. I have a lot worse reaction to gluten now then when I first was diagnosed. I never purposely cheat but I know if something has snuck within a few minutes.

Also make sure your makeup like your lipstick is gluten-free. I had a horrible reaction the other week and I didn't know what it was from. Come to find out the vitamin E in the lipstick they had was made of wheat. It just shows how much we have to be careful.

Good luck with everything :D

bklyn Enthusiast
bklyn
Posted

I have a slightly different issues than many of the other people who post here. I have no gastro symptoms and was diagnosed because of low iron. I have been gluten-free about 6 months, but most of the problems I've faced have been psychological. I was totally blindsided by this diagnosis (because of no symptoms) and found it hard to accept that I had to face this lifestyle change. All of the possible complications put me in a tailspin, and the resulting worry and stress have caused me problems with fatigue (result of stress.) I have started to see a therapist to help me work through these problems and try to live one day at a time, rather than worrying all the time about the "what ifs". I tend to feel sorry for myself when I can't just grab a bite to eat at the mall. Eating out is an important part of my family's social life and now it all revolves around where I can eat.

tarnalberry Community Regular
tarnalberry
Posted

I try to deal with it in whatever way seems appropriate for the particular stress. For instance, over the holidays, with all the formal work parties (which I was helping organize), I got tired of having to time to make real food I could before or after a party, and sitting there watching others eat. So I didn't go to each and every one I could have. I went to a couple of them - it's still important to be social :) - but I also gave myself permission to say no, just because I wanted to.

I don't know if this is an issue for you or not (it seems to vary by individual), but I learned early on to "be selfish" (in the good way) about my health. Someone may offer me something, but there should be NO guilt in saying no because it's my responsibility to not eat things that are dangerous to me. If someone offered you rat poison, you wouldn't feel guilty for turning it down, and this is a very similar thing. It's tougher, though, because OTHER people think of wheat as food. In the end, it doesn't really matter what they think - it's food for their body (maybe! ;) ) but not for mine! I'm not rude about it, just very matter of fact, as though it were the most basic thing in the world that I can't eat gluten.

Another thing I do when I'm feeling overwhelmed - and it's usually because of time, or the lack of time to make my food (and gluten is the lesser of the problems, dealing with the hypoglycemic tendencies is by far the trickier one - if it was just gluten, I'd keep leftover rice in the fridge at all times! :D ) - I make myself sit back and refocus on what I'm eating. I spend a little extra time (I make the time, because it's important) at the grocery store, finding things I will eat that week that will be good for my body, and generally refocus.

And when all else fails, a piece of Gluten-free Casein-free chocolate. :lol:

luvs2eat Collaborator
luvs2eat
Posted

When I was diagnosed (2+ years ago), I'd only had symptoms for several months, but when my doc told me I had Celiac Disease and I read what it can do to your small intestine, I very simply stopped eating wheat/gluten. This may sound dumb... but it never occured to me that I had a choice to "cheat" and hurt myself... I just stopped eatihg wheat/gluten and researched and researched food lists and ways to change existing recipes.

I kept saying, and still say to people... in the scheme of life and with everything that happens to people... this is nothing. There is so much I can eat... my celiac seems to me to be mild... no diary issues, no skin issues... my ONLY symptom was diarrhea and iron deficiency ... no pain, bloating... nothing. I consider myself so lucky to have so few physical symptoms.

It did take a whole year for my digestive system to return to normal... but it's as right as rain now. I still don't see "cheating" as an option... and don't find it hard to stay away from wheat/gluten. If I don't know if there's wheat/gluten, I don't eat it... simple as that.

Now that I've found a bread mix that makes wonderful sandwiches, I am a happy camper!!

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jknnej Collaborator
jknnej
Posted

It also helps to have a good support system. My hubby is great; only times he gets frustrated is when we're on vacation and he wants to eat at a nice restaurant. I tell him I will still go with him but it's not the same for him. I refuse to eat out; I simply won't risk cross contamination. Just made that decision about a week ago but I'm sticking to it.

This disease requires you to put thought into something you normally wouldn't; where, when, how you eat. Even dieters don't have this problem. If they're stranded somewhere they can still eat something unhealthy; we, however, would suffer the consequences.

I'm frustrated today because I'm going on a choir competition and I'm the only one carrying a cooler filled with ice and gluten-free foods. Everyone else just gets to stop at McDonalds or Subway and eat. It sucks.

But I would take feeling healthy over ALL of the inconveniences anyday. That's why I'm going this. I could chance it and go to McDonalds myself. But I'm not willing to..I want to feel great when we perform.

We just come here and talk to each other and it helps....I've also simply accepted the fact that no matter how busy I am ( I leave the house at 6:30am and get home around the same time or later, have weekend job committments, etc) I simply MUST take time to cook my meals each week. Sometimes it's frustrating but when the week hits and I already have my meals in the fridge, I'm so proud of myself.

KaitiUSA Enthusiast
KaitiUSA
Posted

Jknnej- A strong support system is so helpful! My mom has a severe wheat allergy but my dad does not have any food restrictions and they don't even bring anything containing wheat and gluten in the house. If my dad wants anything he will eat something before he comes home or at work. I definately understand the whole inconvenience thing and completely agree with you it is well worth it to be cautious. :D

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