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Sick And Tired Of Being Sick And Tired...

fatigue weakness celiac

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#1 DucksnPucks

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Posted 28 November 2012 - 06:39 AM

Hi All,

I haven't posted in a while, which is a reflection in part on how I've treated this horrible disease. I was diagnosed a few years back, and since then have been able to tolerate all my favorite wheat products (at least for a while) without really getting sick. I would fool myself into thinking I was eating gluten free, and would ignore little things like Chicken Nuggets, fries at McDonald's, an occasional hamburger and sandwich. But about two months ago I started getting very light headed, tired and lethargic No real stomach symptoms, but there really didn't need to be I knew what was happening. Usually this meant laying off the wheat products until the symptoms went away, but they didn't go away, just kept getting worse.

At times I felt like the top of my head had been sawed off and my brain wasn't attached anymore. I woke up in the morning and felt like I hadn't slept at all. By the middle of the day I am weak and barely able to walk. My muscles were sore (not bad but enough to notice), a little bit of joint pain here and there. Can't think straight, in a constant daze. Then about a month ago the stomach symptoms kicked in. I became more bloated then I have ever been in my life. Had D, then C, along with everything else I had been experiencing.

This time, the symptoms weren't going away, they were getting worse. This has never happened to me, usually I could get by but not anymore. I knew what was happening, my body had simply had enough and I had done serious damage, all by being naive about this terrible disease.

Over the past three weeks I've done a 180. I don't put anything in my mouth without knowing if there is a chance of it being contaminated with gluten. I did even more research to try and determine what I had done wrong, and it turns out, there is a lot I had missed. I don't eat fast food any more. In three weeks I've dropped 10 pounds (I was overweight to begin with) and feel leaner. I eat a lot of salad, baked potatoes, grilled chicken and have lost all cravings for sweets and other "naughty" foods. The brain fog and light headedness disappeared about a week and a half ago, but I'm still dealing with the extreme fatigue, though that has been gradually getting better (some days are better then others, two steps forward one step back kinda thing).

I pray that the fatigue gets better, I want so much to be able to walk for an extended time and get back to the gym. I'm still not 100% (I would say I'm stuck between 60% & 70%). But I can finally begin to see the light at the end of the tunnel.

I have no idea why I am posting any of this. Maybe its just so my story can be heard. Its so hard for my family to see me like this and I know its difficult for them to understand what I am going through. Sometimes I feel like they don't believe me when i tell them how I feel. I know my wife is sick of hearing about it. And my kids aren't old enough to understand. But this has devastated me and made it difficult to have any normal semblance of a life. I'm just tired of being tired all the time.

Thanks for listening y'all.

Jason

PS - Anyone else ever feel like they constantly needs a massage from the muscle/joint pain? lol =)
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#2 Chaff

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Posted 28 November 2012 - 07:20 AM

Thanks for posting this. I'm just 10 days off gluten, so no words of wisdom from me, but I appreciate what you're going through. It seems unfair that some people go off gluten and seem to feel better immediately, and other people take forever.

But you're healing and every week you'll get a little better. In the meantime, please come back here to rant if you need to. There's always someone here also going through it and who wants to listen.

(Argh--I took my hot water bottle to the movies today for back pain.)
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celiac (positive tTg, negative biopsy), hypothyroid, hereditary hemochromatosis
live in Okinawa, Japan; hope to resume training for ultra-marathon soon

casein-free, legume-free; 99% fructose-free

I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free

#3 DucksnPucks

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Posted 28 November 2012 - 07:31 AM

Thanks for posting this. I'm just 10 days off gluten, so no words of wisdom from me, but I appreciate what you're going through. It seems unfair that some people go off gluten and seem to feel better immediately, and other people take forever.

But you're healing and every week you'll get a little better. In the meantime, please come back here to rant if you need to. There's always someone here also going through it and who wants to listen.

(Argh--I took my hot water bottle to the movies today for back pain.)


Thanks Amelia. Everyday is a battle right now, just looking forward to the little victories that keep me going to the next the day. I'd give anything just to be "normal" for a day, you know what I mean.

BTW - Love the hot water bottle idea, I might have to try that one! lol =)
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#4 kareng

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Posted 28 November 2012 - 07:45 AM

It will take a while (maybe years) for all those years of damage to heal. All the vitamin deficiencies caused by intestines that can't absorb them cause problems,too.. When you start feeling better and go back to eating gluten, it will continue.

Not much to say to you if you aren't ready to take your disease seriously. Not a very good example you are setting for your kids. Celiac is genetic, so they may have it someday, too. So many awful things those poor kids will learn from a father that doesn't care about his health.

This isn't meant to be unfriendly. Its just disheartening for me to see this.
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#5 DucksnPucks

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Posted 28 November 2012 - 08:06 AM

It will take a while (maybe years) for all those years of damage to heal. All the vitamin deficiencies caused by intestines that can't absorb them cause problems,too.. When you start feeling better and go back to eating gluten, it will continue.

Not much to say to you if you aren't ready to take your disease seriously. Not a very good example you are setting for your kids. Celiac is genetic, so they may have it someday, too. So many awful things those poor kids will learn from a father that doesn't care about his health.

This isn't meant to be unfriendly. Its just disheartening for me to see this.


Karen, I can't say that I've treated my body well over the past several years, but it hasn't been on purpose. I think it's easy to see that there has been a bit of denial on my part, especially since the symptoms would disappear for months on end. I could get away with eating whatever I wanted because there were no consequences. The other part of was lack of education. While I was "trying" to eat gluten free, I didn't fully understand the foods and chemicals I needed to stray away from and thought that an occasional cheat wasn't a bad. I blame myself for this.

But I do have to say one thing, respectfully, you don't know me, or my kids, or what kind of parent I am. I take offense to you being critical of me and the example I set for my kids without knowing a thing about me. This is not meant to be unfriendly, but my wife and I are great parents and do the best we can to raise our children as best we can. We probably won't win any parent of the year awards, but we provide a loving home with morals, respect and always try to set good examples.

I understand the mistakes I have made and the position I have put myself into. And I am doing everything I can to correct those things to allow myself to get healthy and remain healthy for a long time to come. I'm educating myself, eating right, and doing the right things for a change. I came here to get support, find people who I can identify with, and possible help others who are going through the same thing, not be torn back down and criticised.
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#6 srall

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Posted 28 November 2012 - 08:11 AM

I could give you a lecture about cheating, but I think deep down I know the only reason that I don't cheat is because I couldn't get away with it. I got some cc at my inlaws house for TG and have been racked (wracked?) with pain for days. I've also been sitting on a heating pad constantly. But it sounds like you're ready. Once you get over the hump and truly start feeling better I don't think you'll be tempted to cheat anymore.
The one thing that still gets me all these 2 1/2 years later is that I still have bad days and like now, bad periods of time where I am just sick...can't get anything done, and it bums me out. So, expect those days, and a possibly slow recovery, but embrace the good days...they are there for you if you are diligent. Good luck.
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#7 kareng

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Posted 28 November 2012 - 08:15 AM

Sorry but posts like this make me very sad. Kids do notice things like Dad having to take extra naps or not having energy to play. Mine did. I just hope you now can realize the seriousness of this disease and that it affects the family, not just you.


This site has easy to read and understand info about Celiac disease for you and your wife to read:


http://www.cureceliacdisease.org/

We have a newbie thread with some info too.

http://www.celiac.co...ewbie-info-101/
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You better cut the pizza in four pieces, because I'm not hungry enough to eat six. ~Yogi Berra

 

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#8 Adalaide

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Posted 28 November 2012 - 09:51 AM

I missed years because of this horrid disease. Like other parents I've seen here, my children had a "safe" place to play where I could sleep and I knew they wouldn't be able to hurt themselves. When they finally went off to preschool I was so thrilled that I could send them off and nap guilt free, only that came with a whole new set of guild. It is awful that there was a lack of education that left you in a position to eat all sorts of wheat and make yourself sick for so long. While tragic that you are so terribly damaged now, the good news is that it has given you the wake up call you terribly needed and brought you where you know you can get the help and information you need to stay safe and healthy.

The bad news is that because of how long you have been systematically poisoning yourself, you may have a long road ahead. I'm coming up on a year gluten free and I'm still not to the point where I am physically capable of much. Lengthy grocery shopping trips are enough to wipe me out for the rest of a day. I still have a day or two a week where I can barely function. Short and slow walks are my exercise. These things are all hard won, and often are things I must push through still.

Your wife may get sick of hearing about it, sure. My husband probably is. But until she knows as much about it as you do, she hasn't heard enough. She has to be able to be every bit as safe as you in the kitchen, regardless of which of you is preparing meals. Once your kids are old enough to do ANYTHING in the kitchen they'll need basic celiac safety rules too and if it isn't second nature to her you'll have that many more problems. (I live with my in-laws, I know how frustrating gluten eaters can be.) The fact is, this isn't just your life, this is her life too... and the rest of it. She needs to get used to this and the sooner it becomes second nature to her the sooner she can stop hearing about it and you guys can relegate it to the back burner and jokes. I find that humor helps for me anyway.
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"You don't look sick or anything"

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#9 rosetapper23

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Posted 28 November 2012 - 10:54 AM

Okay, I'm not going to give you a lecture. Actually, I did a similar thing many years ago and ended up unable to absorb iron--I spent years receiving intravenous iron infusions, so I will NEVER knowingly ingest gluten again.

That said, I can give you a couple of remedies that should work for your muscles and joints. First, you should take chelated manganese, which you may be deficient in and which is extremely necessary for the health of your muscles, tendons, and ligaments. Secondly, if you take 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of organic safflower oil and mix them in a smoothie or glass of juice once a day, your muscles will stop aching almost immediately. Your joints should start feeling better, too, in a few days. I'm pretty sure these remedies will help you out--good luck!
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#10 Celiac Mindwarp

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Posted 28 November 2012 - 11:45 AM

Yeay for your 180!!

Sounds like you learned your lessons the real hard way. Great you are already feeling the benefits of 'true' gluten-free living.

My story is different, I didn't know I might be celiac but was wheat free mostly for years. It is horrid addictive stuff and every now and again I would have a little and be wrecked.

I still dont have a full diagnosis, but know enough to know that I must be gluten-free for life. The difference on true gluten-free has been incredible for me.

I really hope that percentage goes up for you now you have made a full comittment to the diet.

Stick around and ask questions.

With family, I have found the more I take it seriously, the more they do. But I do most of my whinging here, and drip information to my folks - very serious but not overwhelming. The convincer for my family is seeing the change in me.

Good luck, fresh start, go for it
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#11 DucksnPucks

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Posted 28 November 2012 - 12:07 PM

Thanks for sharing the links Karen, really appreciate the help! =)

Sorry but posts like this make me very sad. Kids do notice things like Dad having to take extra naps or not having energy to play. Mine did. I just hope you now can realize the seriousness of this disease and that it affects the family, not just you.


This site has easy to read and understand info about Celiac disease for you and your wife to read:


http://www.cureceliacdisease.org/

We have a newbie thread with some info too.

http://www.celiac.co...ewbie-info-101/


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#12 DucksnPucks

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Posted 28 November 2012 - 12:14 PM

I'm done with the cheating. In fact, as I told my wife this morning, there are so many great alternatives out there now that I almost don't have to. For example, we had lunch at red Robin and I had a burger with a Gluten free bun. Yum! Also, since I've kicked the gluten completely, I've stopped craving processed foods like I used to and I "feel" thinner (if that makes any sense?). I'm not constantly bloated.

I know I'm going stumble along the way, but I just can't function doing what I've been doing all these years. The toughest part is knowing which products have gluten and which don't. I'm being 100 times more careful than I was before, and can feel the difference all ready. I hope to be able to go back to the gym and gradually begin light workouts again in a couple weeks.

I could give you a lecture about cheating, but I think deep down I know the only reason that I don't cheat is because I couldn't get away with it. I got some cc at my inlaws house for TG and have been racked (wracked?) with pain for days. I've also been sitting on a heating pad constantly. But it sounds like you're ready. Once you get over the hump and truly start feeling better I don't think you'll be tempted to cheat anymore.
The one thing that still gets me all these 2 1/2 years later is that I still have bad days and like now, bad periods of time where I am just sick...can't get anything done, and it bums me out. So, expect those days, and a possibly slow recovery, but embrace the good days...they are there for you if you are diligent. Good luck.


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#13 1desperateladysaved

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Posted 28 November 2012 - 12:45 PM

Karen, I can't say that I've treated my body well over the past several years, but it hasn't been on purpose. I think it's easy to see that there has been a bit of denial on my part, especially since the symptoms would disappear for months on end. I could get away with eating whatever I wanted because there were no consequences. The other part of was lack of education. While I was "trying" to eat gluten free, I didn't fully understand the foods and chemicals I needed to stray away from and thought that an occasional cheat wasn't a bad. I blame myself for this.

But I do have to say one thing, respectfully, you don't know me, or my kids, or what kind of parent I am. I take offense to you being critical of me and the example I set for my kids without knowing a thing about me. This is not meant to be unfriendly, but my wife and I are great parents and do the best we can to raise our children as best we can. We probably won't win any parent of the year awards, but we provide a loving home with morals, respect and always try to set good examples.

I understand the mistakes I have made and the position I have put myself into. And I am doing everything I can to correct those things to allow myself to get healthy and remain healthy for a long time to come. I'm educating myself, eating right, and doing the right things for a change. I came here to get support, find people who I can identify with, and possible help others who are going through the same thing, not be torn back down and criticised.


Get well, yes, get well!
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#14 JNBunnie1

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Posted 28 November 2012 - 12:59 PM

But I do have to say one thing, respectfully, you don't know me, or my kids, or what kind of parent I am. I take offense to you being critical of me and the example I set for my kids without knowing a thing about me. This is not meant to be unfriendly, but my wife and I are great parents and do the best we can to raise our children as best we can. We probably won't win any parent of the year awards, but we provide a loving home with morals, respect and always try to set good examples.


All you can really do is try to be a good example. Unfortunately in this case better education and acceptance
of your situation would have made that easier for you. I don't have any children. Instead, I am now a surviving
adult child of what I believe to be a Celiac casualty. I got sick and then went gluten free when I was 19, and tried
very hard to convince my father to do so with me, as there were a number of signs that he had it, and we all
know you have to get it from somewhere! He did not, and three years later he died of leukemia, when I was 22.
There's no guarantee that had he gone along with me at the time it would have changed anything. I do still wish
I could have done something differently to convince him.

Anytime someone slaps you on the wrist here, it is because they are afraid for you. Afraid that you will continue
in denial and ignorance, and that someone else who comes along and reads this conversation in the future will
not recognize the seriousness of the situation. I try to tell as many people my story as possible, so that any
parents out there will read the story of a daughter losing her father and maybe make different decisions than they
have been. I guess that's just another way of trying to set a good example.
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If you're going through hell, keep going. ~Winston Churchill



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