I'm Tired Of Living Like This....

[shai76]

I used to come here a lot but haven't a lot this summer because the whole celiac and food allergy thing has been something that I've been trying to forget about. Don'tget me wrong, I still watch my diet. I just feel like it is my identity at times and that can get depressing. The past couple weeks I did a challenge and I am still recovering. I thought maybe the blood tests were wrong and I didn't have it. I ate some Rice Chex with a small amount of barely in them (as you all probably know). I have been in pain and running to the bathroom since. It makes my job hard too. I'm a photographer and I can't stop a session and run to the potty.

I'm also anemic now, and so tired.

I just needed to vent, and I am still hoping to overcome my other food allergys. :/

[Nantzie]

Hugs... Sorry you're feeling crummy. I think until you do a challenge, either accidentally or on purpose, you really don't know the extent of how gluten effects you. It can be a frustrating thing to live with. I know for me, if it wasn't for the threat of getting so sick, I probably wouldn't be strict. Back when I was trying to lose weight before going gluten-free, I was the queen of the half-day diet. So I know me being strict on the gluten-free diet has nothing to do with will power. It just sucks to be sick all the time.

Hope you feel better soon.

Nancy

[hez]

I understand not wanting this disease to be your identity. It is hard when it is a part of who you are and it alters how you live your life. The key for me is that it is part of who I am but not what I am. I am so much more than this disease. Maybe try just taking it day by day for awhile and not worry about the larger picture until your feeling better.

Hez

[mouse]

I hope I can address this properly as I sometimes have a hard time choosing the right words.

This disease has nothing to do with who you are. This disease does not define you. If someone has diabetes, they are not their disease. If someone has Osteoporosis, they are not their disease. Lynne who is on this board and is in a wheelchair, is not the wheelchair, nor is she gluten ataxia. She is Lynne to me and nothing else. I look at the person and their behavior and that is who they are to me. Definately not what sickness they have. Yes, this requires a special diet, but now I get to choose where we eat - how great is that LOL. I am meeting a friend for lunch tomorrow near the mall and she was so concerned about where was safe for me. Luckily (he he), PF Changs is right in front of the mall entrance. One of my favorite places. Hey this disease does have an upside - no one argues when I give them their options for dining.

I hope you get to feeling better soon as that is a real pit. BTW, I think you have a great profession. I love looking at photography as I consider it wonderful artwork.

[Guest Mtndog]

This disease has nothing to do with who you are. This disease does not define you. If someone has diabetes, they are not their disease. If someone has Osteoporosis, they are not their disease. Lynne who is on this board and is in a wheelchair, is not the wheelchair, nor is she gluten ataxia. She is Lynne to me and nothing else.

Mouse (all these new Id's are confusing me)- You said it SO WELL>

Shai- I have been feeling a LOT like you lately. it really can sometimes feel like it's WHO you are. That's why I never say I AM a celiac. I say I HAVE celiac's. I think part of what you're feeling might be depression after consuming gluten in your challenge. Just remember that things will get better. Judging by your picture and your job as a photographer (I'm so envious- I agree with Armetta that it is art!) there is a LOT more to you than having celiac sprue.

[shai76]

Thanks for your support. I think you are right, that I am just feeling depressed from the gluten. Partly from the way it effects my brain and mostly because I feel so run down from effects of this challenge. I can't wait until those effects wear off too. I just feel so exhausted! I was on my eliptical trainer last night and could only do 15 minutes. I usually go 20-30 minutes. I appreciate this place and being able to talk to others who are going through the same thing.

.....just waiting for these tummy aches to go away.....

[tiredofdoctors]

I think I understand how you're feeling . . . at times it does get overwhelming. It is hard not to be defined by this disease when it encompasses so much of your world. While several different diseases force you to watch your diet rigorously, I don't know of any that requires such investigation into what is or is not safe to eat. It gets frustrating and often infuriating.

I agree -- don't let this disease define who you are. You are so many things more than just a Celiac patient. I hated it when I heard doctors during rounds say "this is the right knee osteotomy" -- NO. This is a patient, an actual human being who had an osteotomy on the right knee.

In my case, I'm a physical therapist, I'm a wife, a mother, a daughter, a sister, an aunt, a daughter-in-law, a sister-in-law, a friend, a goofball, and a person who happens to be in a wheelchair because of Gluten intolerance. But I refuse to let this disease define who I am. Then it wins.

Please take care of you . . . . .

xoxoxoxox

Lynne

aka "Wheelie" by Armetta --- Mouse

[AndreaB]

Shai,

I'm sorry you've been feeling down.

I don't have much to offer that the others haven't said. I've found your posts to be insightful and helpful to me and I'm sure others. I'm glad you are a part of this forum.

Your job sounds wonderful! I always enjoy looking at photos.

HUGS for you and hope you get over your challenge quickly.

[gfp]

Wonderful advice so far... but you have me confused.

The photo looks like it has a circular polariser in some ways but in others it looks a lot more linear?

Oh, yeah and you have celiac ....

Sorry, I'm not being facetious, Im just focussing on your other more interesting things. You choose to be a photographer .. you don't choose to be a celiac.

I hear being a photographer can be really frustrating. Geez, you know I hate those guys with press passes ... makes it so easy getting into a event with a camera. Course then your told you can only get in the press cage for 10 mins and no flash and .......or you go to an aoutside shoot and its throwing it down or the light is jut flat!

but you obviously love it, frustrations and all. What do you do if its raining and you have a shoot ... bad light etc.

You adapt.. point in case your picture.

The gluten-free diet will bring you many benefits ... but it requires you to be adaptive.

I hope this helps put it into perspective a little.

[pixiegirl]

Although it was said before, its really important to keep in mind, that the gluten changes how you think. The times I've been accidently glutened its like taking a downer pill, life looks bleak, I lose my zest and everything else is just rotten. That's not me being a pain in the butt, its the gluten playing a number on my brain because most of the time I'm pretty upbeat.

And its for that reasons (and how physically awful it makes me feel) that I won't eat or test any gluten again, its just not worth it. I know this sounds "pollyannaish" but now that you know how badly it affects you, you can get excited and upbeat about trying to never let that happen again.

I was diagnosed almost 3 years ago (after 11 years of illness) and initially I was on this list 2 times a day, Celiac was all encompasing... but now 3 years later I come here occasionally to keep up with new food products and say hi to the group... Celiac no longer defines me... as a matter of fact my diet is now so second nature that I often go days with saying or even thinking the word Celiac.

Susan

[shai76]

Wonderful advice so far... but you have me confused.

The photo looks like it has a circular polariser in some ways but in others it looks a lot more linear?

Oh, yeah and you have celiac ....

Sorry, I'm not being facetious, Im just focussing on your other more interesting things. You choose to be a photographer .. you don't choose to be a celiac.

I hear being a photographer can be really frustrating. Geez, you know I hate those guys with press passes ... makes it so easy getting into a event with a camera. Course then your told you can only get in the press cage for 10 mins and no flash and .......or you go to an aoutside shoot and its throwing it down or the light is jut flat!

but you obviously love it, frustrations and all. What do you do if its raining and you have a shoot ... bad light etc.

You adapt.. point in case your picture.

The gluten-free diet will bring you many benefits ... but it requires you to be adaptive.

I hope this helps put it into perspective a little.

Yes it does. Thanks. And I sometimes use a circular polariser (especially working outdoors or with kids). I'm a portrait photographer so I don't have a press pass.

I mostly shoot kids.....okay, that sounds sort of bad and funny at the same time.

Today my stomach aches weren't as bad, and I sold some nice wall portraits to a very beautiful family I shot this morning. So that helped take the attention off of my sore belly.

[The Landlord]

Pixiegirl

Thanks for giving me hope that one day I will be able to go more than a couple of minutes, or maybe even days without thinking about or talking about Celiac. My friends and family will be glad to here this!!

Celiac kind of defines me right now, but that's because I choose to let it. I'm feeling so much better that I need something to channel my newfound energy into. I'm doing this by trying to educate as many people as I can on Celiac, and also on refining good easy to make gluten free recipes. Some of my friends and family don't understand why I'm so interested in it, and why I talk about it all the time. It's getting better though, I think most of them are getting good at ignoring me...

[ebrbetty]

((((hugs))))

my dr wants me to do a challenge too, but he said it will take weeks to get any symptoms, I'm too scared to deal with that pain 24/7 again

[chrissy]

I mostly shoot kids.....okay, that sounds sort of bad and funny at the same time.

even in your depressed state you gave me a giggle!! hope you're feeling better soon.

[Saz]

I envy you in one way.

I wish that I felt ill when I had something with gluten in it. I have to eat a ton to get ill, but the reality is that even though I can't feel it now, it doesn't mean I won't become ill in the future.

Because I don't get ill it I find it so hard to not just have a sandwich or whatever for lunch, but if I was going to be ill, I wouldn't even think about it.

I don't know about the U.S but here in Oz the food variety and taste has improved so much in the last 10 years, even a lot resturaunts now have tasty glutenless meals.

One thing that kinda helped me when I little, If someone asked what my allergy was I only say Celiac. I refuse to use the word disease, adding that made feel like I had someting catching. You all probably think I'm mad but it helped me so I thought I'd share lol.

[gfp]

One thing that kinda helped me when I little, If someone asked what my allergy was I only say Celiac. I refuse to use the word disease, adding that made feel like I had someting catching. You all probably think I'm mad but it helped me so I thought I'd share lol.

Hey, thats not mad, Ive had people move away like they are going to catch a fatal illness from being in my proximity and others who think gluten-free food must be bad for them...like a non diabetic shooting insulin or a photographer shooting children....

shia... keep your chin up and count down the days not up

[TCA]

just wanted to send a HUG your way!!!

[Kat-Kat]

I envy you in one way.

I wish that I felt ill when I had something with gluten in it. I have to eat a ton to get ill, but the reality is that even though I can't feel it now, it doesn't mean I won't become ill in the future.

Because I don't get ill it I find it so hard to not just have a sandwich or whatever for lunch, but if I was going to be ill, I wouldn't even think about it.

I don't know about the U.S but here in Oz the food variety and taste has improved so much in the last 10 years, even a lot resturaunts now have tasty glutenless meals.

One thing that kinda helped me when I little, If someone asked what my allergy was I only say Celiac. I refuse to use the word disease, adding that made feel like I had someting catching. You all probably think I'm mad but it helped me so I thought I'd share lol.

Im sorry you are feeling bad. I can understand how you are thinking. At first I just did not want to say I had anything. When the seizures started I was fust down right mad.

Then I said to myself 100,99,98,97,96,95, I know crazy I cleaned my mind and started the day over. I like you am not going to be a celiac I am going to be me. I started reading everything I can read. My friends stopped coming around at first they did not know what to say or do.

I got one the phone and would say lets go out to eat and they would say oh are you sure? I said yes I can go here and here and here and it is OK

Im getting over it and they are getting over it I had to change what I eat and touch oh I can't even smell flour. but there are a lot of things I CAN DO well (hehe I rule) oh now that was bad. there is alot more me can do than not.

[shai76]

Hey, thats not mad, Ive had people move away like they are going to catch a fatal illness from being in my proximity and others who think gluten-free food must be bad for them...like a non diabetic shooting insulin or a photographer shooting children....

shia... keep your chin up and count down the days not up

LOL! At least you made me laugh.

My stomach still hurts but at least I didn't spend the majority of the day in the bathroom, so I'm doing good. Does anyone else get really nauseous from gluten on top of everything else? I do. I have no appetite and feel so depressed. My eczema has been worse too. But I feel like I am slowly recovering.

[Fiddle-Faddle]

Could something else be factoring into the equation with the gluten, making you feel worse? Are you pregnant? I only figured out this year (after one blood test and then coming on this board) that the horrible non-stop nausea and vomiting during my pregnancies had less to do with hormones and more to do with the fact that I kept trying to eat crackers like they told me to. Sheesh, no wonder, I couldn't keep anything down! Or maybe it's just the recent full moon. Ow-OOOOOooooooo!

Seriously--hang in there, you'll feel better after a couple of days of rice and chicken and soup and eggs....EDIT:whoops, better forget the eggs!

[gfp]

LOL! At least you made me laugh.

Usually the best therapy for feeling down ....

My stomach still hurts but at least I didn't spend the majority of the day in the bathroom, so I'm doing good. Does anyone else get really nauseous from gluten on top of everything else? I do. I have no appetite and feel so depressed. My eczema has been worse too. But I feel like I am slowly recovering.

I think you might be aggravating it by not eating and having an empty stomach perhaps.

Obviously take your GP's advice.... as well but just consider eating some bland, mainly water containing foods (like crudites) just to keep your stomach happier.

You could try prescription anti-nausea meds ...

One I use (rarely) is from a friend who's a cancer patient and has belladonna. I take it very rarely but it seems to really settle the stomach. You can get a viscous cycle with the stomach.... once its all angry you don't wanna eat and that in itself makes it angrier.

Depending on state you might also find other prescribable anti-nausea meds.

[shai76]

Could something else be factoring into the equation with the gluten, making you feel worse? Are you pregnant? I only figured out this year (after one blood test and then coming on this board) that the horrible non-stop nausea and vomiting during my pregnancies had less to do with hormones and more to do with the fact that I kept trying to eat crackers like they told me to. Sheesh, no wonder, I couldn't keep anything down! Or maybe it's just the recent full moon. Ow-OOOOOooooooo!

Seriously--hang in there, you'll feel better after a couple of days of rice and chicken and soup and eggs....EDIT:whoops, better forget the eggs!

I'm sure I'm not pregnant. Besides, my nausea was much much worse with pregnancy. I have been a little stressed lately, which could also have an impact on it.

And definitly forget the eggs! They make me super sick!

Usually the best therapy for feeling down ....

I think you might be aggravating it by not eating and having an empty stomach perhaps.

Obviously take your GP's advice.... as well but just consider eating some bland, mainly water containing foods (like crudites) just to keep your stomach happier.

You could try prescription anti-nausea meds ...

One I use (rarely) is from a friend who's a cancer patient and has belladonna. I take it very rarely but it seems to really settle the stomach. You can get a viscous cycle with the stomach.... once its all angry you don't wanna eat and that in itself makes it angrier.

Depending on state you might also find other prescribable anti-nausea meds.

The only medicine I take is nexium. My doctor doesn't like prescribing too much since I have so many allergies to foods and drugs. I have to be really careful. I've taken anti-nausea medicine a long time ago and it caused severe depression for me. It was compazine. I've been kind of scared of them since.

[Confused in Iowa]

It is hard - my 11 year old has recently (within 2 months) been diagnosed with Celiac....and he has absolutely NO symptoms of the disease. From his biopsy, they said his villae (forgive me if I don't spell these words correctly), but anyway, these were just not standing straight up as they should be in his small intestine but more just kinda drooping. Of course this was from the dietician who shared the report with me...the dr, who is a pediatric dr. just said you have Celiacs, go 100% gluten free, and see a dietician. WOW what a shocker. My son also has juvenile diabetes. I'm still somewhat in the angry and frustrated and in the BS stage, but I'm coming out of it. We are working to try different breads, because that's the hard one for us. He likes the good ol' white bread for his lunches at school. I think I've made 4 loaves of bread in the past few days that end up in the garbage.....Plus eating out...the driving through McDonalds cuz we are out and about and need to eat. I wish it was me...I could easily live without McDonalds, Pizza Hut, etc. Just heartbreaking to think of it for my son for the rest of his life. But as I tell my son and myself, he's a perfectly healthy little boy, can still do his sports, and this is just a little hurdle in life we have to jump.

So, with my son not having any symptoms and no complications from eating wheat...it is hard to change your lifestyle. But I've been going out on the board a lot lately and reading and trying to consume my life with it's ok, we can do this thinking instead of the poor me.

I do have to say, that I have noticed in the last several days, that my son is much more happier. He's always been a short tempered type of a little guy which I always blamed on his father's side of the family (haha), but I am beginning to think it was the gluten causing the emotional turmoil in his life. I'm really anxious to see if his grades improve in school also.

I have to say tho, it's nice to see that other people get angry, and frustrated at times...cuz it makes me feel like it's ok to be angry once in awhile.

[shai76]

It is hard - my 11 year old has recently (within 2 months) been diagnosed with Celiac....and he has absolutely NO symptoms of the disease. From his biopsy, they said his villae (forgive me if I don't spell these words correctly), but anyway, these were just not standing straight up as they should be in his small intestine but more just kinda drooping. Of course this was from the dietician who shared the report with me...the dr, who is a pediatric dr. just said you have Celiacs, go 100% gluten free, and see a dietician. WOW what a shocker. My son also has juvenile diabetes. I'm still somewhat in the angry and frustrated and in the BS stage, but I'm coming out of it. We are working to try different breads, because that's the hard one for us. He likes the good ol' white bread for his lunches at school. I think I've made 4 loaves of bread in the past few days that end up in the garbage.....Plus eating out...the driving through McDonalds cuz we are out and about and need to eat. I wish it was me...I could easily live without McDonalds, Pizza Hut, etc. Just heartbreaking to think of it for my son for the rest of his life. But as I tell my son and myself, he's a perfectly healthy little boy, can still do his sports, and this is just a little hurdle in life we have to jump.

So, with my son not having any symptoms and no complications from eating wheat...it is hard to change your lifestyle. But I've been going out on the board a lot lately and reading and trying to consume my life with it's ok, we can do this thinking instead of the poor me.

I do have to say, that I have noticed in the last several days, that my son is much more happier. He's always been a short tempered type of a little guy which I always blamed on his father's side of the family (haha), but I am beginning to think it was the gluten causing the emotional turmoil in his life. I'm really anxious to see if his grades improve in school also.

I have to say tho, it's nice to see that other people get angry, and frustrated at times...cuz it makes me feel like it's ok to be angry once in awhile.

Wow, I'm sorry. It would be especially hard for a teenager. I was in my late 20's when I was diagnosed and already had a bunch of food allergies from the disease. On the bright side, at least he was diagnosed early enough that he might avoid having the other complications from the condition.

[AndreaB]

I have to say tho, it's nice to see that other people get angry, and frustrated at times...cuz it makes me feel like it's ok to be angry once in awhile.

Welcome to the board!

This is a good place to learn, pour your heart out, rant......whatever you need. There are a lot of caring, concerned people, and more than likely some have gone/or are going through what you are.

You've come to the right place.