12 replies to this topic

[Tutahl75]

I've been on my gluten free diet for about four months now after three years of hell seeing doctors over my symptoms. For the most part, I have been coping well, but sometimes when my skin dries out or I get a bad case of diarrhea, those old feelings come flooding back.

Does anyone have tips on coping with stress over living with Celiac's.

[seeking_wholeness]

Tutahl75,

I understand the stress! I try to remember that all of life is a process, and that we never really reach any "destination." Also that every "accident" that I can pin down increases my knowledge of how to cope with celiac disease. Knowledge is power, and empowerment is good!

I am currently coping with the effects of five gluten accidents in the past two weeks--all innocent, as I never knowingly cheat. I am exhausted, depressed, and incapable of focusing, and my inevitable thought is that I will never understand this diet well enough to feel good all the time! But now I know four more products to add to my "do not buy" list (one got me twice, as it seems I initially pointed my finger at the more likely but wrong suspect). And I try to remember that I actually went several weeks with no significant trouble. My problems tend to crop up when I get sick and tired of eating the same things over and over again and decide to take a chance on a slew of new products--which is only to be expected! I'm just upset this time because only two of my five accidents were from known risks!

The learning curve on the gluten-free diet lasts at least a year, which is difficult to accept but very true. Give it time, and be gentle with yourself as you learn. Healing will come with time and experience! My best to you!

--Sarah

[celiac3270]

I find this stressful, also......not so much due to the difficulty and restrictions of the diet, but due to the symptoms and the stress they put on me. If I get sick and miss school, then I get stressed about what tests and notes I missed, and the stress makes the whole thing worse. Initially, I found the diet stressful, but now it's simply a burden.......something that stops me from being able to eat whatever I want at a restaurant, etc. As for coping.......I don't really have a way

[darlindeb25]

yup--sometimes we are the bug and sometimes we are the windshield--whatever we do, we must always remember that we are in control now--we may have to eat a certain way, but we now know what is making us sick--i get to the point sometimes where i go back to what i ate the most in the beginning of going gluten free--cottage cheese and fruit and i always eat my caramel corn cakes and peanut butter--accidents are very hurtful for us, but accidents do happen and they always will, no matter how careful we are, we are only human--keep your chin up--deb

[Queen Serenity]

Hi!
Believe me, it will get easier with time. I have been gluten-free for over 9 years now. I know it's not easy to watch family and friends eat all kinds of food, but you will get used to your diet. In fact, it won't even phase you after your first year! As for accidently ingesting gluten, well, we all learn to avoid those foods that annoyed our system. Don't worry, it just takes a little time to adjust! So, try not to stress yourself out! That's what this forum is all about.--talking to people who are in the same boat as you!
Don't worry, be happy! That's my motto, because we could have been dealt with something more than a dietary disease. Good luck, and remember, just vent all of your frustrations here, because there is always someone who understands!

Vicki

[llj012564]

First of all, your talking about what's going on, that's a key way of coping with it so keep it up I too feel myself slip back into the frustration when it's not going well. I have been gluten-free since Feb04 and I also spent many years trying to find out what was wrong. I thought once I knew what was wrong , and followed the diet , life would be so much better. Ok ,yes many things have improved, but I have had to learn to slow down and be ok with a slower timeline. I'm not a very patient person by nature , this disease makes you one . I guess I try not make it the focus of my life ( hard some days ). I try to focus on what I can eat, not what I can't. I search for new and easy way to prepare gluten-free meals. Lastly I try to look at this as a new challange in my life ,( in a good way ), Im very competitive and I love a good fight so bring it on We all have to find our own way to cope, but you don't have to do it alone.

[veggf]

Hi,

I know this is an old conversation, but hopefully still relevant. Tutahl75, it does get easier and it is so nice to know why you get symptoms, even though symptoms and getting "Celiac Whacked" is no fun. In general you will get c-whacked less and less often as you learn more about the diet. But you will likely still have occasional accidental ingestions, but at least you that they will pass. I think that is the best thing, knowing that the scary period of mystery illness is behind you and health is coming.

I will admit that right now I'm frustrated with having celiac disease so much a part of every aspect of my life. I bike and run, all the people I bike and run with can just eat anything and I feel a bit frustrated about how much thought has to go into it all for me. I have been gluten-free for over a year since I was dx with celiac disease in early 2003, so I have surrounded my self with lots of yummy gluten-free foods but I'm just a little frustrated right now. I get jealous (not an emotion that I should embrace) of the other athletes I know as I struggle to keep enough calories for energy and maintain my weight (every time I think I have it maintained, it drops). Oh well I'll quit complaining, I do have my health which I did not have for several years.

Tutahl75, it will get better. It is a process and I think we just have to bear with it and gain from it. Like someone else said, you can gain patience from coping with celiac disease. I also think that I have gained some compassion for people with other dietary or health, or physical challenges. Hopefully we can all gain positive skills and experiences as we cope!

Take Care!

[celiac3270]

I think most of us get jealous . I'm in eighth grade now, but last year, at the end of 7th grade we had a class party type thing...we went bowling, but the food there was amazing. Pizza after pizza, fries, nuggets, chocolate chip cookies, marshmallows and hot chocolate sauce to dip them in, etc. I was only four months on the diet at the time and I felt really bad that I could only drink the cola......and eat a small bag of fritos and a genisoy bar. I find that generally the gluten-free diet is an inconvenience, but it's really frustrating and upsetting when you're around people who are eating gluten and who have never had to deal with any health issues and the sickness.

[Sharon C.]

I understand the stress! I try to remember that all of life is a process, and that we never really reach any "destination."

But there is a destination. I think that destination is to be at peace wiuth oneself, and content. For a lot of people, that is difficult because the stress of staying on a strict diet is stressful in of itself. You can never just relax.

Also that every "accident" that I can pin down increases my knowledge of how to cope with celiac disease. Knowledge is power, and empowerment is good!

Unfortunately in my son's case, he had no gastro upset. His only symptoms were malnourishment over time. He can continue getting glutened by accident and I won't know about it until something drastic happens, like he passes out from anemia or breaks a bone. I am highly stressed, and I almost wish he did have gastro symptoms to make it easier for us to know when he's been contaminated. I know you want to make us feel better, but I am in a serious slump and I just cry all the time when he's not here.

[celiac3270]

Although it's probably difficult for a celiac to understand when you're in constant pain from the symptoms, my mom has said the same thing to me before. Besides, if I hadn't been getting sick, I never would've brought anything up with my doctor, who wouldn't have sent me to a GI and I wouldn't have been diagnosed in the first place. I might have found out when I was a twenty-five year old with osteoporosis......

[Sharon C.]

Exactly. My son never complained of feeling sick, so although he withered away to just skin and bones and had muscle wasting and never gained a pound over 40 pounds (he is 8 years old and weighs only 40 pounds but is average height), no doctors believed me or would look into his conditon. Instead they all insisted he was perfectly fine until an endocrinologist acknowledged he was terribly underweight and sent him for tests. Maybe if he had stomach ailments, they would have discovered it back when he was 3 years old, when it first became noticeable to me that he was extremely thin. But no, it went on for 5 more years and he is malnourished with the bone age of 4 1/2. Anyway, that's what happened.

[Carriefaith]

For coping with stress, I just keep reminding myself that this diet is what I have to live with for the rest of my life in order to stop damaging my body.

I try not to let gluten foods bother me by replacing them with good gluten free foods. I am always trying new recipes to make the gluten-free diet interesting. When I cook gluten free most people don't even notice the difference between my gluten-free food and gluten food

Avoiding restaranunts as much as possible and eating before I go out works for me. And when I wish I could be eating pizza/pasta/hamburgers/cake with everyone else, I just remind myself that if I eat those foods then I will be super sick for days. It's just not worth it.

[celiac3270]

he withered away to just skin and bones and had muscle wasting and never gained a pound over 40 pounds (he is 8 years old and weighs only 40 pounds but is average height),

That sounds so familiar. My brother, who is now nine (ten in January) is about 55 pounds.....almost 10 and 55 lbs....he might've weighed about the same when he was 6-8. Anyway, he, too, has no other symptoms of celiac, but has the gene....

For coping with stress, I just keep reminding myself that this diet is what I have to live with for the rest of my life in order to stop damaging my body.

I try not to let gluten foods bother me by replacing them with good gluten free foods. I am always trying new recipes to make the gluten-free diet interesting. When I cook gluten free most people don't even notice the difference between my gluten-free food and gluten food 

Avoiding restaranunts as much as possible and eating before I go out works for me. And when I wish I could be eating pizza/pasta/hamburgers/cake with everyone else, I just remind myself that if I eat those foods then I will be super sick for days. It's just not worth it.

I concur with just about everything you just said . For me, though, the stress isn't really over the diet, but over the symptoms. The diet isn't stressful for me cause it's just what I have to do and if I follow this diet and don't have symptoms, I know that I can live a healthy, relatively normal life. Celiac, unlike other conditions such as diabetes, will NOT eventually take your life or affect things such as your vision, hearing, taste, etc. in the long term, provided that you catch it early enough and treat it accordingly. Therefore, the stress for me is just in getting sick. You're right though: acceptance is important.

Once again, I agree with your next statement. I find that many gluten-free products are just as good or better than the regular stuff. My main issue with the diet, though, is that it does come so monotonous. I feel like I'm eating the same thing every day. I always have potatoes, a meat, and a vegetable, it seems. Potatoes, steak, carrots.....potatoes, chicken, broccoli...........it gets REALLY boring. Since I can't have tomato sauce yet, I've had to cut out foods like lasagna, spaghetti, and gluten-free pizzas. I, too, am trying to find new gluten-free alternatives and lately I've had a little more luck.

That's a really good idea: to eat before you go out. It's not always an option, but if you can, I guess, you wouldn't be hungry so you wouldn't even care as much about the pizza or whatever.....I should try that next time.

That's about it......i'm just feeling talkative.