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Does Anyone Ever Feel Really Good?


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#1 GFreeMO

 
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Posted 30 July 2012 - 08:20 AM

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.
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#2 Adalaide

 
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Posted 30 July 2012 - 08:28 AM

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.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

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CRPS DX March 2014


#3 GFreeMO

 
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Posted 30 July 2012 - 08:36 AM

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.
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#4 MitziG

 
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Posted 30 July 2012 - 08:41 AM

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!
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#5 nvsmom

 
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Posted 30 July 2012 - 08:45 AM

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. :)
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#6 GFreeMO

 
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Posted 30 July 2012 - 08:48 AM

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.
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#7 GFreeMO

 
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Posted 30 July 2012 - 09:11 AM

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+ :)
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#8 Adalaide

 
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Posted 30 July 2012 - 09:31 AM

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. :lol: 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.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#9 Mnicole1981

 
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Posted 30 July 2012 - 09:44 AM

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.
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gluten-gree as of May 9, 2012

#10 love2travel

 
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Posted 30 July 2012 - 09:55 AM

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. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#11 love2travel

 
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Posted 30 July 2012 - 10:02 AM

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! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#12 Kirstie

 
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Posted 30 July 2012 - 10:18 AM

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.
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#13 RonSchon

 
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Posted 30 July 2012 - 10:36 AM

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.
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#14 GFreeMO

 
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Posted 30 July 2012 - 10:42 AM

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.
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#15 GFreeMO

 
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Posted 30 July 2012 - 10:43 AM

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!
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