Does Anyone Ever Feel Really Good?

[GFreeMO]

Just wondering if anyone ever feels really really good. LIke good as in before all of the celiac started? It seems that for me, I am either having gut pain, a headache, joint pain, muscle pain, back pain....etc...Every day I have one symptom or another. I guess I am just a little annoyed. The doctors act like if you just go gluten free, you will be all back to normal...Yeah right....I've felt kind of sick from eating and reacting to a ton of bell peppers over the weekend. Bye bye bell peppers. They can join the long list of trigger foods.

[Adalaide]

Today my headache is nothing more than a dull almost not noticeable ache. My overall pain is barely there, if my doctor made me rate it I'd probably rate it a 3 which means that by bedtime I probably won't be over a 5. No GI problems today because I've been remembering my flax shake at night. This, for me is an awesome day. I wouldn't say I feel really really good, but I feel good. That is better than I used to ever dream I'd feel, and I'm so thankful I feel this way today that I will cherish every barely achy moment of it.

I have accepted the simple fact that I will live every moment of every day of my life in pain of one sort or another. I have simply stopped letting it control me. Yes, there are days that I literally can not walk, but other than that I do what I want or need to and let what pain comes come. I can't stop it, and it comes without rhyme or reason and so I simply carry on. Hopefully sometime in August I'll get to the zoo before they start construction on the new giraffe exhibit. It won't be done for 2 years and I'm already so excited I can't sit still when I think about it.

[GFreeMO]

Friday I woke up feeling good. I thought to myself oh wow nothing hurts. Then came Friday night. I made this big stir fry with steak and 5 bell peppers and spent the night in the bathroom. Not glutened i am sure..just reacting to all of those peppers. I just get so pissed when I sit and remember how good I use to feel and everything that I use to do.

I need to get more of an attitude like Adalaide. Thanks for posting.

The zoo sounds neat! Where are you located? I love zoos.

[MitziG]

Yes! But it took a long time! About 7-8 mos in, I noticed I didn't feel so crappy all the time. About a year after dx, I actually felt GOOD. Now, at a year and a half, I feel fantastic! Better than I have for the 30+ years prior to finally being dx! It takes time, and for some, it may mean eliminating more than just gluten. I had to ditch casein too to really kick the fatigue! Hang in there!

[nvsmom]

I've had periods where I felt great even though I'm almost positive that I've had undiagnosed celiac my entire life; I'm not yet sure what healed feels like yet. I remember training for a marathon in my 20's and hitting that runner's high where I started giggling while I ran just because it all felt so great. I never was able to run the marathon because my knees can't get past 25 km without some injury but it was fun.

I'm lucky, celiac hasn't hit me psychologically too hard. It appears to have affected my energy levels some, and I now know it caused my migraines, but it never caused a depressive episode. I think when your mood if fine, and you have a bit of energy, it's easier to handle our bodies imperfections like stomach pain, head aches and joint problems. Rolling with the punches is more... do-able.

A few years back I was eating very gluten lite because I was cutting out processed food so I could lose weight. My mental state was fantastic. During that time, a disc in my back burst (owie) causing some paralysis down some leg. Because my mental state was so positive, I was able to handle that set back easily... I quite impressed myself. LOL If I'd been down at the time and tired (glutened up) it probably would have been difficult to accept and could have caused a downward spiral into a darker place...

I think the mental aspects of this disease are really undertreated and not focused on enough. Whe you are down, everything in life is harder. If you have energy and you're in a good place, our health problems seem smaller...IMO.

[GFreeMO]

Yes! But it took a long time! About 7-8 mos in, I noticed I didn't feel so crappy all the time. About a year after dx, I actually felt GOOD. Now, at a year and a half, I feel fantastic! Better than I have for the 30+ years prior to finally being dx! It takes time, and for some, it may mean eliminating more than just gluten. I had to ditch casein too to really kick the fatigue! Hang in there!

I've been gluten free for almost 3 years. I have become a super sensitive. I only eat meat, fruit and veg. No grains and no casein and nothing processed at all. I eat massive amounts of fruit...tons..maybe I need to cool it on some of that.

[GFreeMO]

I think you are right that a positive attitude goes a long way. I'm trying!!! Perimenopause is not helping matters. Oh, the joys of being 40+

[Adalaide]

I'm in Utah. If you couldn't already tell by my picture, I sort of have a thing for giraffes. Well, if having dozens of stuffed giraffes that stare at you while you sleep is "sort of" having a thing for anything. Oh my gosh, I also just found out a few weeks ago that our zoo does this thing where you can feed the giraffes! I don't know where I'll find fifty spare bucks but I'll find a way. Will trade soul for giraffe feeding?

The tiredness is what can really get me because you can't just power through that. Someone suggested to me yesterday that I go for a run to wake myself up. I almost died laughing. Run. Me. Bwahahaha. Some people don't get that it isn't like fall asleep tired, it's a deep physical tiredness that no amount of sleep can cure. With time it is slowly getting better. I wouldn't ever say I have energy, but I do stuff.

My attitude is hard won. I spent a lot of time feeling sorry for myself and finally one day I was like, wow, you are being pathetic. Here you are in pain, whining like your life is over. You aren't dying, you aren't crippled, it just hurts. Get over yourself and get off your fat butt. When it's that special time of my month though, all bets are off. I practically break out the streamers and confetti and throw a pity party.

[Mnicole1981]

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.

[love2travel]

I have always felt very good, actually, as a child and a teenager and as an adult. Until my accident five years ago which has caused serious pain ever since. Then due to inactivity for a year my muscles wasted and I am still trying to reverse the damage. And I have been diagnosed with fibromyalgia which means that my body hurts from head to toe always. Never ending discomfort. Hurts to put my clothes on. I must lie down to watch TV as I cannot sit more than 30 minutes at a time. But very little of this would be celiac related except hopefully the fibro which has not improved since going gluten free. So, now I have pain daily but remember in the not too distant past how well I felt. Always full of energy, ready for adventure with no aches and pains.

I agree that much of this is mental. Up until a year ago pain controlled my life. It would dictate what I did and when. Now I just go and do what I need to do without considering pain. It certainly feels so much better controlling it! Though it is almost impossible, my husband and I travel to Europe two months of the year. Travel really, really, really hurts but I have massage before flights, stand up on planes and book massage at my destination. It takes a lot of planning. I ask the doctor for drugs to help me on flights (painkillers do almost nothing) and just go. It is mentally satisfying doing this - if I can travel with my kind of pain, I can do so much other stuff. Another thing that helps is not to think too much about the future. While I look forward to it (i.e. travel and cooking) I do not dwell on what ifs and do not think much beyong tomorrow.

[love2travel]

I forgot to mention I feel very good in ways because I have conquered many fears. Pain has forced me to reflect on my life and make some changes. Now I take care of my body more than ever before. I have always been very empathetic but now in different ways as I can relate and understand. This better equips me to honestly help others. Though this pain has been very, very difficult I would not trade this past five years for pain-free years just because of how it has changed me in a positive way. I value things that I used to take for granted. I have grown in so many lovely ways and am very happy about it indeed!

[Kirstie]

Just wondering if anyone ever feels really really good. LIke good as in before all of the celiac started? It seems that for me, I am either having gut pain, a headache, joint pain, muscle pain, back pain....etc...Every day I have one symptom or another. I guess I am just a little annoyed. The doctors act like if you just go gluten free, you will be all back to normal...Yeah right....I've felt kind of sick from eating and reacting to a ton of bell peppers over the weekend. Bye bye bell peppers. They can join the long list of trigger foods.

I'm sorry to hear you never seem to feel well, but I know exactly how you feel. It's literally a new problem everyday (or a reoccurring one!) My family and friends are supportive, but they don't really understand. I just constantly feel bloated, or tired, or nauseas or achy, etc etc etc.

How do you cope? Do you keep a food diary, write a list of trigger foods? Have you been gluten-free for very long?

I've only been gluten-free for almost 3 months, and I feel better (haven't been vomiting!) but its a slow process, hopefully this time next year I am even healthier.

Not sure about you, but doctor's have been a waste of time for me.

[RonSchon]

I have to live PERFECTLY for several days in a row, but yes, at that point I feel amazing.

Learning to live with the discipline necessary to live that perfectly is my downfall so far in my first month of knowing. The pay off is so incredible though.

[GFreeMO]

I'm sorry to hear you never seem to feel well, but I know exactly how you feel. It's literally a new problem everyday (or a reoccurring one!) My family and friends are supportive, but they don't really understand. I just constantly feel bloated, or tired, or nauseas or achy, etc etc etc.

How do you cope? Do you keep a food diary, write a list of trigger foods? Have you been gluten-free for very long?

I've only been gluten-free for almost 3 months, and I feel better (haven't been vomiting!) but its a slow process, hopefully this time next year I am even healthier.

Not sure about you, but doctor's have been a waste of time for me.

I don't keep a food diary but I am suppose to be low SALS. Those peppers put me in SALS overload!

I agree with Ron, if you live PERFECTLY and eay only your safe foods you can feel better.

[GFreeMO]

I forgot to mention I feel very good in ways because I have conquered many fears. Pain has forced me to reflect on my life and make some changes. Now I take care of my body more than ever before. I have always been very empathetic but now in different ways as I can relate and understand. This better equips me to honestly help others. Though this pain has been very, very difficult I would not trade this past five years for pain-free years just because of how it has changed me in a positive way. I value things that I used to take for granted. I have grown in so many lovely ways and am very happy about it indeed!

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!

[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.

[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?