Are We Never Going To Be 'normal' Again?

[CMCM]

Hey....what is "normal" anyway? From what I've read, gluten probably shouldn't be eaten by anyone. Humans are the only living beings that drink milk beyond infancy, and look at all the problems people have with dairy and digestion. The reason certain foods cause reactions in so many people is precisely because they actually shouldn't be in the human diet. There are probably people who could eat or drink truly horrible revolting things and not get sick....but most of us would. So which is normal?

I'm convinced that the modern health woes of our society (like diabetes which is showing up in very young kids now, overweight conditions even in kids, heart disease, high blood pressure, high cholesterol, asthma, all the increasing autoimmine diseases, and on and on and on) might very well be linked to our diets. And grain. And dairy. And who knows what else. It's the lucky few who don't appear to be affected by anything, but that's probably not true either. People are affected to varying degrees, and huge numbers of people just ignore their symptoms, they learn to live with them and say nothing affects them. People adapt and accept a lesser state of health as "normal." Many people who have different problems accept that as normal and don't realize how bad they actually felt until later when they have changed things.

Maybe WE'RE the normal ones! Our bodies revolted and said to us "Don't eat this stuff. You'll get sick, you might get cancer. You'll get all sorts of other physical ailments. So don't eat this stuff." Maybe the unlucky ones are those without strong enough symptoms to "hear" the message they need to hear.

As I read somewhere, some people with "silent celiac" disease find out about it when they are diagnosed with some sort of cancer.

[marciab]

I've gotten obnoxously happy since my stomach has calmed down. I'm trying to empathize with people I know and love when they are complaining to me about their stomach issues, but I can't stop chuckling inside. I'm sorry, but I'm horrible right now..... In my own defense though, I've told them all about my success with this diet so many times and they just blow me off. So I just can't help myself. I am working on getting this stupid grin off my face !!!!! But this is just so cool !!!!!!!

As for feeling normal, having been sick for 16 years with CFIDS, I've come to the conclusion that some illnesses are just taken more seriously than others. Especially if there are physical symptoms that others can see. Or if the illness leads to death. I tell myself that having an illness that people can't see or relate too, has made me more understanding towards others with similar illnesses. I'm a more compationate person now than I was before I got sick. I had to grieve the loss of my health before I could move on.

I may not get completely healthy from following this diet, but I am feeling better in a lot of ways already. I had no hope for feeling better before this diet, so at least now I have hope.

Thanks for posting this ... I started to post something like this but never made it past the title "AM I Screwed ? " ... marcia

[rml15]

Good! I'm glad you both understand what I'm talking about. So I take it that you, Monica, have just accepted the fact that you won't be 'normal' ever again. Because that's what I'm starting to think too. And you know, the scary part is, sometimes I wonder if I really am a freak because I am SOOOOOOOOOOOOOO OBSESSED with CC and wondering if I am getting all of the 'possible gluten' on my hands when I wash them, drinking out of cups in the coffee room that are in the middle of the stack and double checking to see if there is any residue from anywhere, etc.!! But it's like, how careful can we really be without literally turning into a person with OCD on top of Celiac!

I'm also turning into a really jealous person. Jealous of everyone around me who doesn't have to constatnly think about this and wonder why their knees are hurting again all of a sudden and stressing over possible CC, etc. Ugh.....

But regarding my cake, thanks!! I don't know how I'm going to do it yet! hahaha, but I do know how WONDERFUL all of the gluten free cake that I've had is, so I'm thinking, no one will know the difference!!!! hahaha.......I'm hoping!

I so understand when you say you are always washing your hands and making sure there is no residue in cups or glasses. I find myself doing that all the time! I like to bake non gluten free desserts and when I do I have to wash my hands like 50,000 times! I have been having a really hard time lately with feeling "normal". Sometimes it seems like no big deal but then other times it is really depressing. Do you have any other food allergies? I am also lactose intolerant. I found that out in August of 2005. I was diagnosed with Celiac disease in 2002. I was also diagnosed with having IBS at the same time. I think when I found out I was lactose intolerant it really changed by optimism on the whole food allergy thing. It is so hard to find food that is both gluten free and lactose/dairy free. But more and more products are being developed every day for us to eat, so the situation is improving.

I was strange before so, this hasn't changed anything in that respect. Just I will be a gluten-free person forever. Let us not think of ourselves as abnormal but that we are more normal than those eating gluten. How many of them are having problems and not knowing why? I prefer to think we are special, the chosen ones of the gods.

I was diagnosed with Celiac disease and IBS in 2002. In August of 2005 I was diagnosed as being lactose intolerant. I see that you have many allergies and intolerances to foods. What types of foods can you eat and do you have any suggestions for gluten free and lactose free foods?

Thanks

[danikali]

hahahahaha, Marcia, that's so funny. "Am I screwed?" That would have been an interesting thread too!

Anyway, I know I know, there really is no 'normal' but what I meant was, will I ever be able to live my life, eating the things that I know I shouldn't and be able to move past this? Or will my diet constantly be changing? I know I have never really been normal (in the sense of digestion health, specifically) because from junior high on, I have always had stomach problems.....and then it lead to my immunity, etc. where everything hurts if I get 'glutened.' Buuut, with that said, I guess I'm just wondering, will I ever feel 100% positive, that if I stick to ONE diet, I will not have these issues anymore?

Patti, you said that you have a lot of other intolerances now.......and your diet is constantly changing........so there is my point. Will we ever be able to NOT concentrate on food soo much?

I could see, for those of you who only have a problem with gluten, and you get used to what you can and can't do, and before you know it, it is all second nature. But for those of us that are constantly getting sick and probably have new intolerances, a lot, then when are we able to relax again? When can we stop thinking about food and wondering if we'll get sick from it? Where does it end? This is exhausting already! (I know, I'm impatient, but what do you think?)

Oh, and thanks about all the comments on the cake. And I think you're right, I think the cake was Namaste! MMMMMMmmmmmmmmmmmm!

[jenvan]

I also think it really depends on the person, and no one can really say how your body will continue to heal/change etc in the next few years. I would say you should experience some sort of improvement. I'm not sure if I will ever be rid of every physical implication of my Celiac, but I continually do what I can to get there. In the meantime, I try to stay focused on being thankful for any improvement when it comes, and be grateful that my situation isn't worse, as it is for many.

[danikali]

I also think it really depends on the person, and no one can really say how your body will continue to heal/change etc in the next few years. I would say you should experience some sort of improvement. I'm not sure if I will ever be rid of every physical implication of my Celiac, but I continually do what I can to get there. In the meantime, I try to stay focused on being thankful for any improvement when it comes, and be grateful that my situation isn't worse, as it is for many.

You're right, that's true, it could always be worse. And I will admit that when I feel good, I REALLY FEEL GOOD THESE DAYS! I mean, better than ever and so many things really HAVE improved. But when I fall down, it's extra disapointing because I JUST FELT LIKE A MILLION BUCKS and it scares me that I am just being teased.

But again, it could be worse and I can still get through those bad days, on the bad days. I can still make it to work and school and keep trecking on with my life.

[jerseyangel]

Patti, you said that you have a lot of other intolerances now.......and your diet is constantly changing........so there is my point. Will we ever be able to NOT concentrate on food soo much?

[jenvan]

Dani--I understand. I was having my best few weeks ever since gluten-free, but have gotten hit again with some sort of winter cold/flu etc and have been feeling like a** for a few weeks. My goal and hope is that as time goes on those downs become fewer and farther between Glad you have been feeling good !

[cgilsing]

I know exactly what you mean! I have been gluten-free for a year and a half now and even so I have nagging little problems that don't ever seem to go away. I went to a GI one time to try and work out what I could do about them (nothing serious....sleep disturbances, dry eyes, skin and hair, never quite get rid of the bloating, dental issues..etc.) and he really didn't have anything to offer me. I have decided to live with it for the most part (I guess I don't have any other choice! ) I would like to be "normal" again though!

[Guest BERNESES]

You're right, that's true, it could always be worse. And I will admit that when I feel good, I REALLY FEEL GOOD THESE DAYS! I mean, better than ever and so many things really HAVE improved. But when I fall down, it's extra disapointing because I JUST FELT LIKE A MILLION BUCKS and it scares me that I am just being teased.

But again, it could be worse and I can still get through those bad days, on the bad days. I can still make it to work and school and keep trecking on with my life.

I saw my primary care doctor about 6 months into the diet and I asked her why I felt worse sometimes. She said that when you've been really sick, as many of us have, that you lose perspective about how bad the bad days were before because you were so "used" to them. I thought about what she said and I realized my bad days aren't nearly like what my bad days were a year ago. Then, I pretty much felt sick constantly. Now I have good days and bad days but I recover much quicker- knock on wood, my immune system definitely has quieted down (I used to get chronic, very severe ear infections and I have not had ONE since I went gluten-free- it's crazy!). I think it's putting it in perspective and realizing that the bad days will pass.

[cmom]

No, speaking for myself, I will never be normal. Better, yes, but not "normal". Normal, to me, is being able to pull into any restaurant on the spur of the moment and being able to order from the menu. Normal is not having to know where every bathroom is within 70 miles and not worrying about making it to your destination. The list goes on. Having said that, I am focusing on the "better" and I am thankful for that.

[Claire]

Hi Monica (others too)

Normal is relative and subjective. I do know what you are talking about though. People with any kind of a disorder are 'different' than other people without 'that' disorder. But each tends to have 'something' that differentiates from others. So who is normal?

If you mean 'feeling good' or 'feeling right' then there is no doubt that takes time. Also most people who have celiac develop other autoimmune diseases or food intolerance during their undiagnosed period. When you implement the gluten-free diet the gluten reactions quiet down and all the other symptoms that you didn't notice before suddenly stick out like the proverbial sore thumb. Most of these intolerances were likely there all the time but when you had all that pain and misery from gluten you didn't sort out where the misery was coming from. When the gut is healed you will feel better.

I had been on a low gluten diet for many years (I didn't eat much of anything with flour in it because wheat barley and rye had been identified as reactive foods) No mention of gluten. I went gluten-free last August and have been a mess ever since. I am reacting or overreacting to almost everything I eat.

I do believe that this will improve with time. I sure don't feel very normal right now - but then I don't know if I would recognize normal. Would you? Claire

[Guest BERNESES]

The other thing is really- like I said before- everyone has their challenges in one way or another. I thought my friend Kimberly, who I met in college, had it all- drop dead gorgeous, rich, beautiful clothes, great car, kindest woman you will ever meet. Then I found out that she had struggled with bulimia for years and now in her late thirties, is still struggling. That was my lesson that everyone has their challenges.

And you're right- I'll never be able to pull into a restaurant and order what I want and I miss that a lot. But then again, it could be worse, right? It just takes awhile to put it into perspective (I'm still putting it in perspective and I'm sure I always will be.

In the beginning, I used to talk about wanting the old Beverly back- the one with energy. I had an idealized vision of who I used to be. When I really think about it, the old Beverly was sick all the time with stomach problems, arthritis, colds, flus, ear infections, depression, anxiety. She wasn't "normal" either. I kind of like the new me. I'm different, this experience has challenged me, frustrated me but it has also opened my eyes and much good has come of it (and I'm saying this on the heels of getting sick right after my mom died of stomach cancer- I must be an idiotic optimist!). It just takes time.

[danikali]

You know Berness, and everyone, you made some good points. My bad days are NOT EVEN A TAD BIT CLOSE TO MY BAAAAAD DAYS before gluten-free. I literally could not get out of bed, and if I tried, I nearly fainted. Oh my gosh! Those days were so scary! I was at a different doctor almost once every two weeks and I kept telling them, I think something is seriously wrong with my IBS and I've got to have mono again or something. I can't move sometimes because it hurts so bad and I've got a flu or something every 5 weeks, that lasts for about 10 days! And it was getting worse and worse! I really have not taken a step back and realized that NONE OF THAT HAPPENS ANYMORE!!!! When I get glutened, or feel awkward these days, I compare it to my good days (days on which I feel perfect and have probably haven't felt like that since I was 14!) and that's why it seems so bad. But it's so far from what I've been going through for the past few years, especially last summer. Thanks for helping me realize this everyone.

[jerseyangel]

Dani and B, you both make great points--I think I wanted my diagnosis to be "it"--the answer, do it right and everything will be great. I wasn't prepared for what came next, the ups and downs of this thing. Like I said, for me, it's a new normal. Not like before, but like you say, before was not so great. I had no 'restrictions' but I also never really felt good for any length of time. Now, at least I feel like I have some control--I know what the problem is, and if I do get a reaction, I know what it is and that it will pass. What I need to do now is really accept this thing as it really is, and get on with life. But I really, really hope that with time I'll find a 'groove' and that these 'down' times will be the exception and not the rule

[Guest BERNESES]

I think I wanted my diagnosis to be "it"--the answer, do it right and everything will be great. I wasn't prepared for what came next, the ups and downs of this thing. Like I said, for me, it's a new normal. Not like before, but like you say, before was not so great. I had no 'restrictions' but I also never really felt good for any length of time. Now, at least I feel like I have some control--I know what the problem is, and if I do get a reaction, I know what it is and that it will pass. What I need to do now is really accept this thing as it really is, and get on with life. But I really, really hope that with time I'll find a 'groove' and that these 'down' times will be the exception and not the rule

Oh my gosh- that's EXACTLY how I feel. I thought, "OK, I'll go gluten-free and all my problems will be solved, but they're not and that frustrates me and makes me sad. You want that "groove" right away. But it takes time. I'm in a PhD program and honestly, the research and "learning curve" on Celiac's was much more challenging than my multiple regression class. Ay!

[ianm]

The gluten free diet is only one very small piece of the puzzle. You have to change your attitude, habits and engage in self discipline. This disease forced me to change everything about my life. If you knew me two years ago you would not recognize me at all. I am not the man I used to be in any way shape or form. Well I kept the warped sense of humor.

[Guest BERNESES]

I am not the man I used to be in any way shape or form. Well I kept the warped sense of humor.

Thank goodness- one thing that will get you through all this is a warped sense of humor- and Ian, your's is great! Adolescent- right up my alley.

[tiredofdoctors]

Beverly, you are SOOOOOO right I did the same thing -- I wanted the "Old Lynne" back. The one who could walk, who could work, who could see better, who could eat those fabulous rolls in the restaurants, or could eat wherever she wanted -- but the "New Lynne" may be better. She's more optimistic than the Old Lynne ever was, I think. She sees the flowers, and thinks that weeds are flowers, too -- just mistaken as bad by some people. And understands now that sometimes those same people see other people as "weeds", when really, they're "flowers", as well. She sees that strong resilience is a gift that God gave her. She sees that, although she is inconvenienced, she is certainly not handicapped.

The last time I was in the neurologist's office, I was bawling. I begged him, "Please just make this go away. Give me back my old life." He dropped his head and said that he couldn't. It was at that point, that I knew that the "New Lynne" is here to stay -- and decided to inventory her.

So, here's to "Out with the Old, in with the New" -- changes are NEVER easy, and adjusting to a new lifestyle, particularly this one, isn't easy. It's had to feel like "odd man out" when it comes to gluten, because at some point, you feel it's EVERYWHERE and you need to live with a little bubble around you. But then again, you're taking a gigantic leap at valuing yourself -- making sure that you take care of yourself, letting you know that you're important. And that feels pretty good! And the bonus is, in the case of Celiacs, you're going to get better, and your body is going to heal. Hallelujah! My bonus is that none of my symptoms are going to get worse -- what a feeling of RELIEF! And, in an odd way, we're much "healthier" than most people now! Long rant . . . but resignation to this lifestyle, at some point, feels pretty good.

[Claire]

Earlier today I posted a clip from an article. It seems to be lost in space.

I reposted in tonight and it is 'Time to Heal'. Those in the healing stages may find it interesting. Claire

So, here's to "Out with the Old, in with the New" -- changes are NEVER easy, and adjusting to a new lifestyle, particularly this one, isn't easy. It's had to feel like "odd man out" when it comes to gluten, because at some point, you feel it's EVERYWHERE and you need to live with a little bubble around you. But then again, you're taking a gigantic leap at valuing yourself -- making sure that you take care of yourself, letting you know that you're important. And that feels pretty good! And the bonus is, in the case of Celiacs, you're going to get better, and your body is going to heal. Hallelujah! My bonus is that none of my symptoms are going to get worse -- what a feeling of RELIEF! And, in an odd way, we're much "healthier" than most people now! Long rant . . . but resignation to this lifestyle, at some point, feels pretty good.

You've come a long way, Baby!!!!! Claire

[Guest BERNESES]

but the "New Lynne" may be better. She's more optimistic than the Old Lynne ever was, I think. She sees the flowers, and thinks that weeds are flowers, too -- just mistaken as bad by some people. And understands now that sometimes those same people see other people as "weeds", when really, they're "flowers", as well. She sees that strong resilience is a gift that God gave her. She sees that, although she is inconvenienced, she is certainly not handicapped.

You said that so beautifully! I didn't know the 'old" Lynne, but the Lynne I know is strong and beautiful. I think with many diseases, I'm sure that anyone whose life is drastically altered by a physical condition, feels this way. It's got to be a normal part of the grieving process. But then, you start to notice the things that really are important. Like the fact that you are ALIVE! And that in itself is something huge to be grateful for.

[tiredofdoctors]

Ain't it the truth???? I had my "independent night" (the night that my husband drops me off at the local shopping center, and I just shop and browse around the stores for a couple of hours by myself) a few weeks ago. While I was there, it began snowing -- the most beautiful, huge snowflakes, coming down fast and in the wind. I was waiting in my chair (wheelchair) in the front "entrance part" of Wal-Mart, waiting for my husband to pick me up. People were coming out, and of course, saw the snow in the parking lights. One little boy came out and said "WOW!" in the most excited way -- you could tell that he was just elated. Then a lady who wasn't much older than me -- I'm 43, she was about 50 -- came out. She looked at the snow and said, "Oh Jesus." I said, "Isn't it the truth? God has let me live another day just to see this beautiful snowfall -- what a gift." She didn't know what to say. She avoided eye contact with me then, and opened her umbrella and left. It's all in how you look at it.

[danikali]

Wow! What an inspirational thread this has turned into! I'm so glad I have found this site because all of you are really helping me deal with my own 'grieving process' and making me come back to reality that this is real, this is forever, and it's a HUGE change, but that doesn't have to mean it's a bad change. I have the power to make myself feel better, and that's the best part about this whole thing. I need to stop feeling bad for myself and being so careless out of rebellion. That is why I make myself sick again, and then I get mad at this disease when I really have the power myself. It's too easy to see this disease as a 'weed' and blame it and hate it and try to change it. I just have to make my mind up that it's a 'flower' and I actually DO have the power to heal myself, and I'm lucky because not many people are given that chance when it comes to other diseases. For me, it's not too late, and that is what I need to keep focussed on.

Starting today, I will no longer wallow in the past and be angry that it's gone. Today, I am different, and I am accepting it. And it really is a good thing. No more feeling bad for myself. Thanks for helping me everyone.

[floridanative]

I agree this is inspriational stuff and I'm glad I took time to read it. I don't mind my new diet so far but who knows, I may be on the floor crying for a 'real' pizza next week.

But speaking to 'what is normal anyway' I must share the following info. My parents live in a state with high fuel prices. So to save money they drive 20 minutes to get gas in the next state which does have lower prices. This has gone on for a few years now. So finally my sister did the math and figured out that they are saving aprpox. $.20 per tank of gas. This calculation of course doesn't take into consideration on how much time this drive takes them them (almost an hour round trip) and they do it every week or so. My parents are very intelligent people lest you get the idea that they have a learning disibility. So all I'm saying is that I think eating gluten free to get and stay healthy is a little more 'normal' than driving to another state for gas. Anyone agree?

[jerseyangel]

I really don't lament the change in diet or even the loss of spontinaiety in eating out. I just wasn't prepared for the long, uneven healing process involved. I still have digestive and other issues, sometimes from an obvious gluten exposure, and other times the source is a mystery. No doubt, other foods have become a problem, but after 8 months, I guess I thought I'd be farther along. I have heard here over and over that recovery time depends on several factors--one of which is how long a person was sick. I keep telling myself that it took 20 years to find out what was wrong, and it's not going to clear up overnight. It helps so much to know I'm not alone in this--and there are others who are struggling through the healing process with me. This thread has been inspirational--thanks everyone