27 replies to this topic

[GFreeMO]

I don't think so. I had joint pain, stomach cramping and aching yesterday, and a massive headache and nausea today. I am really starting to suspect a casein problem. Seems every time I eat yogurt, I get hives.

Dairy does that to me too. You may need to go off dairy for a while and add it back later on. Sucks but better than feeling like you do.

[love2travel]

Your positive attitude is amazing! I have arthritis, so I know the day to day pain. Some days it gets bad and when you add gut cramps and celiac on top, it gets me down. I need a new attitude!

It is not easy, believe me. But I have learned to cope with it and try not to let it get me down. I CHOOSE to have good days.

My Mom has horrible arthritis pain and she is really struggling. I really feel for you - having to deal with celiac symptoms + arthritis would be terrible. It's one thing to live with one sort of pain but quite another to live with various types of pain. Same with my degenerative disc disease and herniated disc pain, myofascial pain syndrom and IT band syndrome. Whew! It sounds sooooo cliche but I truly do take it a day at a time.

If I can do it anyone can do it. It takes practice to have a good attitude - it does not happen over night. It took me ages. At first I felt sorry for myself. Then I grieved what I could no longer do. You know what? I hired a housekeeper. There are often ways around things.

Oh, yes. Doing something you love each day really gives you something to look forward to. My passions are many. In addition to travel and cooking, I LOVE books. I read, read and read some more. I am learning a language - Croatian, which is a very, very hard one - far harder than English. But I can do it! And I am! It feels great. If I cannot sit or stand, I lie down and learn. Even when I am lying down I am always busy doing something. Keeping busy is important as is sharpening your mind. My husband just cannot get over how much I know about so many topics. I make it a point to keep learning. The day I stop learning is the day I give up which is N E V E R ! ! ! Call me a stubborn overachiever.

[GFreeMO]

It is not easy, believe me. But I have learned to cope with it and try not to let it get me down. I CHOOSE to have good days.

My Mom has horrible arthritis pain and she is really struggling. I really feel for you - having to deal with celiac symptoms + arthritis would be terrible. It's one thing to live with one sort of pain but quite another to live with various types of pain. Same with my degenerative disc disease and herniated disc pain, myofascial pain syndrom and IT band syndrome. Whew! It sounds sooooo cliche but I truly do take it a day at a time.

If I can do it anyone can do it. It takes practice to have a good attitude - it does not happen over night. It took me ages. At first I felt sorry for myself. Then I grieved what I could no longer do. You know what? I hired a housekeeper. There are often ways around things.

Oh, yes. Doing something you love each day really gives you something to look forward to. My passions are many. In addition to travel and cooking, I LOVE books. I read, read and read some more. I am learning a language - Croatian, which is a very, very hard one - far harder than English. But I can do it! And I am! It feels great. If I cannot sit or stand, I lie down and learn. Even when I am lying down I am always busy doing something. Keeping busy is important as is sharpening your mind. My husband just cannot get over how much I know about so many topics. I make it a point to keep learning. The day I stop learning is the day I give up which is N E V E R ! ! ! Call me a stubborn overachiever.

Thank you. I need to take your advice and take things one day at a time or even one hour at a time. I am sure that you go through this too. You can go from feeling ok to feeling really bad in a matter or hours...or minutes. Keeping busy and keeping my mind off of it will help.
I love to read too. In fact, I was just looking online for some new books to order.
I had a lightbulb moment a little while ago. Instead of making celiac the focus of my life, I need to make that the last thing that I focus on. I need to redirect my energy onto something else.
Thanks for posting, your responses made me feel so much better.
Edited for my horrible typing skills.

Edited by GFreeMO, 30 July 2012 - 11:23 AM.

[love2travel]

Thank you. I need to take your advice and take things one day at a time or even one hour at a time. I am sure that you go through this too. You can go from feeling ok to feeling really bad in a matter or hours...or minutes. Keeping busy and keeping my mind off of it will help.
I love to read too. In fact, I was just looking online for some new books to order.
I had a lightbulb moment a little while ago. Instead of making celiac the focus of my life, I need to make that the last thing that I focus on. I need to redirect my energy onto something else.
Thanks for posting, your responses made me feel so much better.
Edited for my horrible typing skills.

How awesome that you had a lightbulb moment! That is brilliant. Get it? Anyway, once you come to the realization that you must stop focusing on the negative aspects of your health you are most of the way there already. Once I truly got that through my noggin things started falling into place. I unsubscribed to the fibro and chronic pain e-newsletters. The only one I participate in is this one. Picture walking along with your celiac worries dragging behind, NOT up ahead of you!! They try to catch up to you but cannot because you are choosing to ignore them and focus on your wonderful books. Then as you focus less and less on celiac you will automatically fill that void with great things that you enjoy.

I really hope things turn around for you. Sure, you will have bad days. We all do. But how you choose to cope with these days is up to you. You can turn them into something new and good. My next plan is to do hospital visitation. Things like that take the focus off you and your problems and gets you thinking more of others, which is a good thing.

[Jestgar]

This is interesting. I've been thinking about this recently, too. As others have said, I've accepted that I'll probably be in pain every day of my life. Somehow, though, it's the tiredness I am more annoyed by. Two or so hours of something that I have to stand up for is pretty much all I can do in a day. Much more than that and I need the next day to recover. But while I've been thinking this, I've been watching other people my age. Despite the fact that I imagine most of them are capable of doing more, most of them don't.

Maybe, if I hadn't had all these issues, I'd be one of those that just spends her life on the couch watching tv. I may not have as many usable hours in my day, but i use them all.

[GottaSki]

From August 2011 - March 2012 I felt better than I ever had my entire life! Until I removed all possible food intolerances last August I never knew how sick I really had been. I had energy, no problem exercising, was mentally clear for 16 hours a day and was on my way to getting my career back on track -- it was absolutely wonderful.

Unfortunately I've had a horrible flare in March and have been horizontal since then with pain, brain fog, digestive problems, etc., etc., etc.

I am extremely grateful for the window of health I had because it reminds me that I got there once -- I will get there again!

[Adalaide]

I'm the same way with standing and being tired. It's much more annoying to be tired than to be in pain. I know after my zoo visit that I'll end up being beat and probably spending 2-3 days barely able to get out of bed, but it will be worth it. And I'll probably spend most of the day in the shade, sitting, watching giraffes. I won't even be standing. But I'll be out, it's an hour drive to the zoo, plus I'm sure my husband will drag me off at some point... something about "other animals" or something. I'll just make sure I have something to read while I recover.

It's weird though, you're right. If I feel well for 2 hours, I'll use all two hours. Other people will just literally do nothing. Ever. I do count my video game time though as doing something, for me it's social time so I don't feel cooped up. Other people might call it "doing nothing" but I'm talking to people who are friends, which sure beats staring at a box on a wall watching imaginary people have imaginary lives in ways that require no imagination from me like a book does.

[love2travel]

It's weird though, you're right. If I feel well for 2 hours, I'll use all two hours. Other people will just literally do nothing. Ever. I do count my video game time though as doing something, for me it's social time so I don't feel cooped up. Other people might call it "doing nothing" but I'm talking to people who are friends, which sure beats staring at a box on a wall watching imaginary people have imaginary lives in ways that require no imagination from me like a book does.

I am thankful I am not as tired as so many here but daily pain and coping with it makes me very tired. I'm done by 2 PM but make wonderful dinner in bits and pieces, when I can.

If I feel well for a few hours I really take advantage of it. My mind rarely gets a chance to go dormant as I am always learning/doing something. I rarely watch TV - maybe 4 hours a week or less. Others seem to waste time but time is so precious to me that I use my time. My two hours can be more stimulating and awesome than many folks' two hours of "wasted" time.

[GFinDC]

As of about 2 months I ago I started feeling much better. Better than in I had in the past 4.5 years I have been gluten-free. I still have episodes here and there and still am not sleeping all that great. I get tired in the middle of the day some. But all in all I feel much better and have some energy too. I even enjoy going out and walking around again, which I haven't for a long time. I went out this morning for work and didn't get sick until I got home several hours later. No biggie, just some D and tiredness. Not sure what caused it. There's an election in the air, that may have caused it. Too much hot air. Or the H.Pylori I am battling at the moment. But anyway, not bad really for a person who hasn't felt very well for a number of years.

I have eliminated a bunch of foods over the years and the latest was grapes and alcohol. Which really seemed to make a big difference. Although it took a while for me to feel a lot better, it wasn't the next day or something. More like a month and a half or so. It was a slow steady improvement.

I hope some of you can find a food to eliminate that will help you feel better too.

[peacefirst]

I think 5 peppers plus a steak might have been simply too much. Any food will not feel too good, when we eat too much.I was also wondering if food combining would help?

[flowerqueen]

You seem to have had a lot of replies already, but personally, I think it may depend on the individual. Sometimes we find out we have other health issues once one is discovered. I was found to be suffering from malnutrition before being diagnosed, even though I ate well. Apart from being severely anaemic (despite already having had a hysterectomy a number of years ago) and I was also found to be lacking in vitamin D. Since taking vitamin D I can report on my joint/muscle pain improved considerably. Have you had your vitamin and mineral levels checked? I also have an under active thyroid which causes different symptoms (before treatment). I have diabetes, fibromyalgia (CFS) and am intolerant to dairy products and some other foods.

Nothing is 'clear cut' and it's trial and error with a lot of things. Don't lose heart though, there's a solution to every problem. One other thing, have you thought of keeping a food diary with everything you eat and drink?

[GFreeMO]

I think 5 peppers plus a steak might have been simply too much. Any food will not feel too good, when we eat too much.I was also wondering if food combining would help?

THis was for my family not just for myself!
I am suppose to be low sals and peppers are not low in sals by any means. Thats all we had in the house though. It tasted great but I really need to pay attention to the sals more carefully.

Thanks everyone.

[JNBunnie1]

Call me a stubborn overachiever.

Stubborn overachiever.