Some Times I Just Want To Feel Normal

[redheartstard]

Lately I've been feeling rough. I have arthritis and there is nothing I can take for it cause my stomach won't have it. I've tried everything to ease the pain it's just not happening. Plus I have no energy like ever. I'm an insomniac and I sleep whenever I can as long as I can. My job is taking every once of energy and strength that I have. Don't get me wrong I love my job. Taking care of others is what I was born to do. I know that there is something going on inside of me but yet my doctors think that I'm making it up. They haven't actually said that but you know when you get the run around. And after going threw 5 general doctors and 7 GI doctors enough is enough. I'm tired of the empty promises and the seeming like they have better things to do and that I'm wasting their time. But if they would just listen for once maybe just maybe we could figure something out. I'm sorry if this just seems like rambling and it kinda is but I need to feel like I'm not the only one. Cause no one understands what I'm going threw. Not my family nor my friends. I feel like I'm annoying theme in some way cause I'm complaining of the same things. But if no one will take the time to fix it what else can I do. See I'm 25 and I can't be a normal 25 year old cause my body literally felt like I'm 45. In and out of the hospital for things I can't control and don't even get me started on dating. I'm just glad I finally found the guy who can handle me at my good points and who is and will always be there during my bad moments. There has to be some silver lining to this right. I just want to be normal. And that is very sad to say out loud. But I can't be the only one... who else feels this way??? Anyone???

[Serielda]

Redheartstard, 

I completely  understand what you are saying. I am semi newly diagnosed only since the start of June and there are days I silently scream to the heavens why can't I be normal, why is any or did any of this happen to me.  Yesterday when getting off work I wanted an iced chai so freaking bad but the  only coffeehouse I was near did not have anything I could drink outside of water.  Or other occasions when friends of mine are out drinking or eating things I want and I can not have that I used to love.  I agree it can be depressing at times, but I stop and look at things and I see one, I am taking much better care of myself. I am eating better and cleaner than before. I know it is not an overnight process but slowly things are coming together for me. I trust what ever the powers that be are, will help me get better day by day. I'd suggest make a list today or start one  of things that do slowly get better over time.  I often view the diagnosis as a way out from  other health issues I could do without  with getting rid of the gluten.  For me it took one word and illness that made me say if I do things right and stay  on the wagon those things won't have such a high as chance happening here.  I look at statistics as this, no one who preaches a doctrine of statistics is 100% right 100% of the time. Just take things day by day, it's what I had to do, I'm quite sure others have and still do. And as corny as it sounds the song from the Life of Brian is right Always look on the bright side of life. It does kind of help once you weigh it against how bad somethings could be. 

[redheartstard]

I hear yeah. And it is hard when you firs get the news. But I've had it all my life and I found out ten years ago. The damage that had been done was a lot. And as my mom always says it will make me stronger and I can relate to my patients even more. But it just sucks. What I need to do is find some people around me that have it and go from there cause they will understand everything.

[ravenwoodglass]

You're in the right place to find people that understand what you are going through. 

Have you tried eliminating anything other than gluten to see if it might help your arthritis? It isn't always the case but some get some relief from eliminating nightshades or soy. In my case I had to be very strict with my gluten-free diet and also had to eliminate soy. I still have arthritis but no where near as bad as it was.

My boss told me about cherry juice's anti-inflammatory properties and it seems to help some folks who drink it daily.

Have your doctors checked your vitamin and mineral levels? Where is your B12 level? If you don't already take a sublinglual B12 you might want to give some a try. It can help with energy and the nervous system.

If you do have any questions don't be afraid to ask and I hope you feel better soon. 

[redheartstard]

I have tried eliminating other stuff and it didn't help. I'll have to try the cherry juice. Thanks for that and I have tried with all my doctors to see if they could check all my vitamins and what not but they never did. I have tried taking a powder form of all the b vitamins and it did give me a little more energy but not a lot. I would take a pill form but my stomach doesn't like any type of vitamin pill. So I'm at a loss. If I could only find a doctor who cares enough to dig deep that would be great. But so far it seems impossible. Do you know of something I could do to relieve some pain? Cause I can't take Tylenol or ibuprofen or any pain pill for that matter. I've tried hot baths and showera but no luck. I've tried heat and cold those didn't work either. I've tried creams and what not and they seem to help a bit but not much. Any ideas would be greatly appreciated. Thanks so much for the tips I'll have to try them

[ravenwoodglass]

  On 7/17/2014 at 2:59 AM, redheartstard said:

I have tried eliminating other stuff and it didn't help. I'll have to try the cherry juice. Thanks for that and I have tried with all my doctors to see if they could check all my vitamins and what not but they never did. I have tried taking a powder form of all the b vitamins and it did give me a little more energy but not a lot. I would take a pill form but my stomach doesn't like any type of vitamin pill. So I'm at a loss. If I could only find a doctor who cares enough to dig deep that would be great. But so far it seems impossible. Do you know of something I could do to relieve some pain? Cause I can't take Tylenol or ibuprofen or any pain pill for that matter. I've tried hot baths and showera but no luck. I've tried heat and cold those didn't work either. I've tried creams and what not and they seem to help a bit but not much. Any ideas would be greatly appreciated. Thanks so much for the tips I'll have to try them

Sublingual B12 doesn't need to be digested. It is dissolved under your tongue. Since celiac damage can affect how we absorb B12 it bypasses the gut and the B12 gets directly into the bloodstream. 

If your arthritis is in your hands you might find a parrafin bath to be helpful. It is a tub with melted wax and in addition to helping with stiffness and pain leaves your hands really soft.

I know you have been diagnosed for 10 years but you may still want to check out the Newbie 101 thread. I think it is at the top of the coping board. There may be some helpful info there.

Sorry you are in such pain and I hope it gets better for you soon.

[redheartstard]

Thanks I'll have to try that

[Georgia-guy]

I can definitely relate to some of your post:

-I have NEVER found a doctor that would actually take the time to listen to me, and one time had to get the law involved cuz my doctor tried to give me an injection I'm severely allergic to

-I found out I have celiac from my nutritionist suggesting it, and had to pay for the blood work out of pocket at a private lab cuz my doctor didn't want to hear it

-I am 25 also! But have had many days I feel like I'm 50. :-(

-dating? Now that's funny! Check out my thread "dating seems impossible". As if it wasn't bad enough before not being an Abercrombie model, now I get to add "I have to be a picky eater cuz I have celiac" to the mix

But I will say this, the people on this forum are awesome! And you said you wish you had people who you could relate to, I'm in Georgia, if you're in or near Georgia, I would love to actually know someone my age in person who can relate as well.

[redheartstard]

See now I wish I lived there but I live in Arizona. But we can still be friends. I hear ya on the whole being a picky eater. It's gotten to the point where I always have to decide where we have to eat and it just sucks cause I want someone else to decide. Plus my family always forgets that I have it cause I'm the only one who does. Doctors suck big time. The only one who seemed to care was my pediatrician. But alas you can't stay young forever...

[Georgia-guy]

Arizona, I've been through there before. Not much but some dry heat. I hate when I go somewhere and I'm sitting there studying the menu thinking "how can I make this dish gluten free?" Then I give up and ask for a gluten free menu. I do love how mellow mushroom does it though, their gluten free menu is in the regular menu.....the only place I don't get a piece of paper, which almost makes me feel normal. My family still doesn't have a clue, they don't realize the phone works both ways (among a bunch of other problems like telling me I was faking everything).

[redheartstard]

Ugh me too. They thought I just wanted to be difficult. And I appreciate they places that do have the gluten-free menus but it makes me feel like a freak in a way. Before the gluten-free thing became big I use to order salads and then I would get the dirtiest looks. Like why does she need the salad she is already skinny and I actually had a waitress tell me that I need to eat more meat and put some fat on my bones. I almost went off. Like how dare you say that. I have to eat junk to keep weight on. Trust me. It's a joke at my work the other girls always say I wish I was that skinny and that they would give anything till they found out what was keeping me that way then they passed on the idea.

[Georgia-guy]

I've had people do the same thing. Telling me I'm underweight, the people that have known me a while asking if I had become anorexic since I dropped a lot of weight in a short period of time, yet all the while I was eating a lot of junk that should have put weight on me. I even had a doctor ask about my diet and said I need to eat more carbs to get some weight back on (haha, eat carbs.....pasta and bread are big carbs....maybe he shoulda just tested me for celiac). **make note, I know you're 10 years in, I'm about 7 weeks in. I could not keep weight steady for anything, I would gain like crazy, then drop like crazy. The last round of dropping was like 75 pounds in a couple months.**

  On 7/18/2014 at 12:35 AM, redheartstard said:

.... till they found out what was keeping me that way then they passed on the idea.

Isn't that the truth! Everyone wants to be skinny, but when they find out our secret, they don't want it.

[redheartstard]

It's just crazy how people think. And with that whole gluten-free craze I was just dumb founded. Why would you be willing to give up some of the greatest things in food just to try to be skinny. I just will never understand

[beth01]

I know what you two are talking about when it comes to the weight issue. I started my life on the skinny side and have been a yoyo the last 17 years and the last two years have managed to drop >150 pounds.  It started out as " wow you look great", "what's your secret?" to "you are getting too skinny, would you eat something".  I too have to eat a ton of junk right now to actually keep weight on.  Sometimes you really just want to slap the s$#& out of people.  I don't even like to go out in public anymore.  People who haven't seen or talked to me in the last few years and don't know about my celiac diagnosis just keep going on and on. I bought a pair of jeans three weeks ago that don't fit me anymore.  People wonder why I never leave the house.

 

ok rant over

[redheartstard]

I know that feeling I have five different sizes in my closet. So I have a lot 9th clothes and my friends always ask why I keep the things that don't fit..and I usually say cause one day I will need them and they just laugh. My friend from work told me that for one month we should cut out the junk and see how much we lose. She lost four pounds I lost about 20. I know the feeling of not wanting to leave the house but I got bored of that. So I go out maybe once or twice a week. And even then it's a struggle. But I want to have fun like the other people my age. But I learn I have to pick my battles.

I have a question for anyone who wants to answer it. If they found a way to manage everything we go threw but the side effects kinda suck....would you do it???

[Georgia-guy]

What do you mean manage everything we go through??

Talking about clothes sizes, you know the "miracle diet" commercials where someone is standing in some huge pants that are twice their size saying they lost that much weight on this diet? Well, I pulled a pair of shorts out I bought last summer cuz the ones I had were too small, and when I put them on they looked like I was in one of those commercials.

[beth01]

I wish I had some of my old pants to do that.  I think I could fit two of me in them.  I used to wear men's pants ( 46 inch waist), I fit into 30's now.  I actually went back to women's jeans and fit into a size 6 and on my way to a 4.

 

I wonder why some people gain so much weight when they are undiagnosed?  But I think that question is like asking " how many licks does it take to get to the center of a tootsie roll tootsie pop?"

[Georgia-guy]

That makes me feel even skinnier...I can slip a men's size 28 waist off without unbuttoning it. :-/ I was always overweight until a couple years ago when everything else started becoming way more pronounced, then it started dropping off slowly, and in the last year fell off like crazy. I think that's when the celiac really started kicking in, cuz it's also when I started eating more pizzas, pasta, subs, etc that are loaded with gluten.

[beth01]

If I didn't have all the excess skin I would fit into a lot smaller sized jeans.  But you don't yoyo your whole life of weight loss and gain without the flabby skin.  I had stretch marks before I had kids from gaining weight so damn fast. 

[beth01]

The skin on my arm waves before I do and if I wouldn't have had a breast reduction I wouldn't need a bikini top I would be able to tuck my boobs in the bottoms.  Not that I would wear a bikini right now.......

[redheartstard]

I mean some kind of cure.

And I have yoyoed all my life but I've always been on the skinny side and I've never had flabby skin. I have stretch marks two before and after my miscarriage. I can't wait to have a kid maybe one day if im lucky. I have a very very small chance if I do.but if I can't my sister said she would be my surrogate. But for now im not ready. I finally met the man I wanna spend the rest of my life with. He has his issues too but I think that's what makes us perfect. And to answer your question people gain cause of bloating and swelling. Beth how long has it been since you found out?