More Ranting About This Horrible Disease..

[SandyShoes]

I read in the previous post rant about how its not TOO terrible in the sense that we can feel basically fine by avoiding certain foods...but let me clarify...

When you scrutinize, study, fret about, worry about, are meticulous over...WATCH EVERYTHING that enters your mouth...and you STILL have bouts where you can memorize every single square inch of your bathroom...wow, its bad. When your favorite site on the internet used to be ROADFOOD.com...and now all you can do is look at the pictures, read the stories, and go..."hey yeah, I remember what that food used to taste like, smell like..."

I was recently diagnosed in May. I was one of those celiacs that did not feel horrible every day. I didnt have the brain fogs, all the strange other symptoms that come alone with this crappy disease. I just felt yucky sometimes. Not all the time, mind you...but enough. The only reason why I went to the doctor, was because my birthmother told me that gluten intolerance ran in the family.

So now that its official, I have been gluten free since May 9th. Since then, I did feel pretty good the first month. But now...omg. God forbid, I ingest one single micro-invisible OUNCE of gluten, I feel horrible for DAYS. If I ingest it, I dont know where it comes from. I eat fruit, veggies and plain meat. The only snacks I eat, I have verified, and verified some more...that its safe. I dont eat ANYTHING that I dont know of as safe. I use gluten free toothpaste, shampoo. My vitamins are organic. I have a dedicated place in my kitchen. I dont use the toaster, hell I dont eat anything that I would have to put IN a toaster. I wash my hands a billion times a day. I wash my handtowels daily. I have my own butter in the fridge that says KEEP OUT in big black marker.

Who knows? And this ISNT ...a HORRIBLE DISEASE? OMG...this is horrible. Truly horrible. Most people look at me, like I have 3 heads, when I tell them I have gluten intolerance. And the summer party season, was NO picnic. "So sorry, no, I cant eat that....err...why?...um......" I just tell people I have a lot of food allergies. Eating a banana for breakfast makes me gag, just gag. I used to eat HONEYCOMB cereal.

So here I am eating healthier than I ever, ever have....and I feel the lousiest I have ever, ever have. A nanospeck of gluten must have been in something I inhaled, mistakenly smudged on or near my mouth....hidden in an ingredient that was mislabeled on a food product that I have surely scrutinized countless times.

My eight year old daughter....(tested negative, thank the LORD above).....constantly tells me, "I am sorry, Mommy, that must be bad for you" in regards to everything in general.

My anxiety that I had previously.....has subsided with the absence of the gluten from my diet. That is the ONE plus, to all of this.

It has been replaced by anger, deprivation, frustration and the general overall feeling of this totally just stinks.

I felt better before, when I could comfort myself with a soda cracker or a waffle. Sure....my intestines are going to heal...most of you will mention that. But I am a smoker. I sit here and kill my lungs everyday....to sit here and go through all of this sometimes to heal my intestines....well, its just kind of ironic to me.

I needed this...I am sorry. I know this is more of a support group, where people band together....and I feel like the party-pooper who is just ready to disband from the group.

Very, very very frustrated...feeling lousy physically today..

Jane in Chicagland...who is approaching 40 on Saturday...and maybe thats what brought this out...

Any other people out there who didnt get diagnosed until midlife when they were truly set in their ways, and got thrown for a loop?

[aikiducky]

I think there needs to be some space here to rant and rave as well as be positive and optimistic! So rant away!

Did you have a lot of damage even if you didn't have a lot of obvious symptoms? If so, I could imagine that it's the healing process that is painful, and that you'll feel better eventually again.

I can imagine that if the diagnosis came out of the blue that it would really throw you. (sad attmpt at humor warning) Hey, why not quit smoking as well, then you could really enjoy some major withdrawal?

Hang in there...

Pauliina

[laurelfla]

I think there needs to be some space here to rant and rave as well as be positive and optimistic! So rant away!

<{POST_SNAPBACK}>

i wholeheartedly agree! there are just times when it's too hard to be positive. i'm all for complaining. sometimes you just need to get it out!

i'm not exactly midlife -- but i did have mildish symptoms and not for that long, so i feel you on the shock of it all. and i seem to be more sensitive to gluten now than before, after a little over a month gluten-free.

it does suck!

[Guest gfinnebraska]

I can relate... you are NOT alone... rant away!!!

I am 42... I knew I couldn't eat wheat for years, but didn't discover the celiac until a few years ago. I was MAJORLY set in my ways, but had to change. a TINY, INVISIBLE spec of gluten throws me into a major episode. I often wonder how I got it... I, too, am very careful. BUT, it happens!! *sigh* All I can say is that it DOES get easier as time goes by. It is VERY awkward at parties, etc. to always say, "I can't eat that..." AND I hate people seeing me with hardly anything on my plate and thinking, "Ohhh... she must be dieting!!!" or "She is TOO GOOD to eat my food??!!??" There are SO many times what I have on my plate is misunderstood. I feel like making an announcement before each event and stating WHY I am not taking some of YOUR casserole! ha! BUT, like I said, it does get easier. People who KNOW me know why I don't eat certain things. That is what matters the most.

My daughter went through a phase of having to point out, at EVERY meal, what I could or could not eat. It was SO annoying!!! It was a constant reminder... one I could have done without!! Bless her heart... she was just totally obsessed with my diet!! Thankfully she has outgrown that. BUT, I bet she is the only 8 year old in her class that knows what gluten is!!

I hope you continue to read this board and learn. That is important. AND know that we are here for you and also your rants!!

[Wandering Hermit]

I hear ya. Dxd this last April and gluten-free since. I am 38 and I LOVE FOOD and I love to eat out and travel.

In fact the shock to my body that likely started my celiac was 2.5 years earlier when I was living in Singapore for 3 months and eating lots of incredible food - food that occasionally made me sick - some exotic bug or parasite likely kicked in my celiac disease.

And after being gluten-free for 5 months I still generally feel like crap, although the watery d and stabbing gut pain is gone. My head aches every day, I'm dizzy and lethargic, and my BMs are often very strange and troubling. I'm hoping that it will all go away soon.

I am religious about gluten avoidal, and 99.999% confident I do not ingest it, so I do not think my lingering problems come from gluten. If I can be this careful and still get it in me, well, then, I'm never going to be able to be 100% gluten-free and I will eventually go insane. If this level of diligence isn't enough, I give up.

I recently had to skip out on a wedding reception due to celiac disease. I was hoping it would be one of these deals where you just grab some food from the buffet and mingle... which would have been fine. No, it was a formal seated dinner. My wife and I just snuck out before we were noticed. It sucked, but not as much as sitting at a table of 12 people and explaining to them all why I wasn't eating would have sucked.

Luckily I love to cook, so I can make food at home that is gluten-free and tasty. And I make up for it my indulging in foods I love, or an extra glass of wine.

[mytummyhurts]

I like talking about myself so I don't mind telling basically everybody about my disease. And everyone I've told as been very supportive and when I can't eat something, they just accept it and move on. I do have people pitying me, but I don't mind being pitied because I feel that way about myself sometimes. My main problem is the traveling and eating out. At least I'm saving money! Oh wait, no I'm not because I pay 3 times as much for my groceries!

[ianm]

I can see where this lifestyle would be very difficult for the ones who don't have any symptoms or have only had them for a short period of time. For me it was the opposite. I had lots of symptoms for most of my life and almost lost everything because I just couldn't function. I was so desperate that I was willing to do whatever it took to make it go away. When I found out that all I had to do was just not eat certain foods I embraced it and have never looked back.

When people start whining and griping when I won't eat their food I tell them all about it. I just overwhelm them with every minute detail about celiac. They then shutup and don't bother me again. I wave my celiac flag high and proud. Ironically celiac was the best thing that ever happened to me. It forced me to change everything about my life. It wasn't easy but I am so glad I did.

[frenchiemama]

You're not alone.

I was dx in April, and before the day they drew blood for the tests I had never even heard of celiac and was not aware that such a thing existed.

I feel better, my severe itching and rash is gone. That is more than enough to keep me faithful to my diet (I'm getting more and more sensitive as time goes on, too).

But some days I just want to scream at everyone! Today my husband went out for pizza with his mom. The leftovers are in the fridge and they smell SO good that I want to cry. I love food. Love it. And now if feels like everything I really loved is gone from my life forever. It sucks.

I feel better though. *sigh*

[Felidae]

Jane I know how you feel. I have been gluten-free since June 9th and any morsel of gluten makes me very sick. I think it is more difficult to train our tastebuds when we are over 30!

[nadinec]

You couldn't be more right on!!!

I was diagnosed in July, and was never really that bad. But now I constantly have issues with bloating and really bad gas - daily. But I don't know if I am still having gluten becuase I don't know if I have a Gluten reaction. I think that I am free of it - but I don't get bouts of cramps or D, so how do I really know?

Apart form that, the food thing is OK - it is the emotional part that I am not dealing with. It is so bad that I wrote an article on it and am trying to get it published. You are forced to become obsessed with food, and that isn't good for anyone, let alone myself who has a few food issues. Plus, I have been fighting acceptance of this - so angry, hurt, upset beucase I don't want to deal wtih this. I feel like a leper and hate having to explain food things to everyone.

I am going on a week long conference next week and can't stand the idea of worrying about food and taking food for the trip.

All I can do is try to get to the acceptance part, beucase this really is like a greiving process.

It does suck - relaly sucks and I compeltely understand what you are saying.

Nadine

[Rachel--24]

I can see where this lifestyle would be very difficult for the ones who don't have any symptoms or have only had them for a short period of time. For me it was the opposite. I had lots of symptoms for most of my life and almost lost everything because I just couldn't function. I was so desperate that I was willing to do whatever it took to make it go away. When I found out that all I had to do was just not eat certain foods I embraced it and have never looked back.

<{POST_SNAPBACK}>

Thats *exactly* how I feel as well. I could've written that myself.

Only difference is I wasnt sick all my life...just the last 3 years. All I have to do is not eat gluten and I'll get better? It's no problem for me at all. I'm happy with the diet...I'm happy I've gained 14 lbs...and I'm just happy to have an answer after all this time.

[drewsant]

I have basically had "D" all my life. I just had accepted that it was part of my disability, and was diagnosed with IBS. It was finally suggested in June that maybe I have Celiac, so I tried the diet, and lo and behold, a month later, I was diarrhea free. I never had the other symptoms, just the stomach cramps, severe diarrhea which would cause me to miss a lot of work. I was upset for about a week, while I was trying to find foods I could eat, instead of concentrating on what i can't eat. I do still get frustrated sometimes, and I didn't go to our family's cabin this Labor Day partly because I didn't want to have to supply my own food for 3 days, and take it with me, and didn't want to be tempted by their food. I basically accept it at this point, and really don't think about it anymore. I did enough hours of research in the beginning to know what to look for, that it really isn't stressful for me to go grocery shopping anymore. And going 3 weeks at a stretch without diarrhea and missing work is worth what headache it does cause.

Sometimes it is easy to just think "I'll just eat these fish sticks, all that will happen is I'll get diarrhea" but the last time I did that I ended up missing 2 days of work. I'm finding that not having diarrhea is great, and so when I do get it now, it REALLY sucks, even though I've lived with it all my life. If I know how to prevent it for the most part, I will.

[bmorrow]

I agree with you too! There are days that I don't think that I can stand this any longer. I started having problems about three years ago , and at my age it has been hard for me to adjust.

I try to stay completely gluten-free, but I still seem to have problems when eating away from home. I can't sit in business meetings anymore without worrying about stomach problems. I can't eat lunch with business associates without worrying about getting gluten, and most of the people that I work with are completely clueless how upsetting this is to me.

Yesterday, the President of the company brought pie and ice cream for everyone. I went to my office and closed the door, and felt very sorry for myself, as well as guilty for being so selfish, when there are other people much worse off than me.

I am thankfull that I have improved, but some days I will still feel that this disease is too much to deal with!

[Guest nini]

my story is more like Ian's. I was so very sick and almost lost everything, including my life, that I just have embraced this and haven't looked back. I've found that most people are a lot more compassionate and understanding than we normally give them credit for. I never hesitate to tell someone all about Celiac and why I am not eating THEIR food... I just come prepared and bring my own food. I'd rather not miss out on socializing just because our culture is obsessed with food.

[skoki-mom]

I hear you!!! I am almost 36, and going been gluten-free for 2 weeks tomorrow! There is a HUGE part of me that wishes I had never been screened for this. I did it as the "responsible" thing to do, but at the time, never thought it would be positive. In my head, as an intelligent person/nurse/mother I know that in the long run, it's much better for me to know. But there is the other side of me that was FEELING JUST FINE and hates that I've had to make these changes. If I had just kept eating gluten, I probably would have gone on just like I was, but now I'm thinking that being gluten-free I will probably get sensitive to it and NOW I will probably get ill if I ingest any, seems strange and somewhat unfair in my opinion! It's like a no win situation for me.......keep eating "normally", feel fine, maybe get symptomatic one day or else wind up with osteo or God forbid cancer, or go gluten-free now and risk getting ill frequently for the rest of my life...hmmmmmmmmmm.

I am well aware there are far worse things out there that people have, someone is always worse off than you, but I think that until you are on a "special diet", you don't fully appreciate the cultural/social place food has in our life and how being different can be so hard. I've never had food allergies myself, though I've always tried to be aware of people's needs and stuff, but I really didn't know how hard it is.

Now this is *really* whiny of me..... when my sis got her Dx back in March, my parents (mother in particular) was DEVASTATED! They cancelled their vacation and stayed home and cooked every meal for my sister for like 3 weeks! OK, she is single and 39 and she did break her hip back in January, but really! So, I call them to pick me up at the hospital after my scope, I get in the van and say "well, I have it too", and it's like, "oh, well, that's too bad Lori". I've been on my own ever since, and I am a single parent with 2 kids!!! This is the story of my life, if my sis has something, the world is coming to an end, if I have something, I get the "well you're a nurse" spiel and am expected to suck it up and carry on. OK, so because I'm a nurse I'm not allowed to suffer or feel grief for myself because every day I see people in worse shape than me???? I don't get it!

OK, turned into a total rant but I feel better now! If you read this far you deserve a medal............

[skbird]

OK Lori, where's my medal?

I try to focus on the positive most of the time but I have had some bad moments where I just am tired of the whole thing. I have been gluten free for 11 months now and this last week I have wanted to pick up my husband's beer more times than I have in the rest of the past 11 months. I can feel it in my mouth, and taste it. I keep thinking, how much harm could that really cause? And then I want to kick myself.

I went to a couple of Labor Day Weekend parties and didn't eat much. One I had a bag of Mrs. May's treats stashed in my purse so I pulled them out and snacked, and shared as well. But I felt really conspicuous - it was a pretty big party, I'd guess 50-75 people there and I still felt weird. Then the next day was a smaller party and we'd brought a salad which I could eat and some of those crispy pea snacks (can't think of the name, sorry) and still got asked if I had enough to eat... was also drinking this special water I found - has peppermint in it (not a tea) and was repeatedly asked if it was alcoholic or something. Sometimes I feel like such a freak, because I'm not totally comfortable talking about food stuff when I don't know people well because they seem to get uncomfortable as well and mutter something like, "oh, bummer..." and wander away.

And yeah, I think, well, that's their problem. But I guess part of me is still hurt because my supposedly "best" friend last spring sat down to talk with me about this and told me right to my face that she thinks I have an eating disorder and I need to get over it. Told me it's unhealthy and that I'm beautiful, talented, etc, and that I ought to realize this and stop obsessing about food all the time. Fortunately not everyone reacts this way, and I still believe in how much improvement I've seen to stick with it but it definitely gets to be tough.

I started seeing my former psychologist again this past summer (after 4 years off) and he has been helping me with this a lot. I spend a lot of time telling him how "normal" I am and feel when I follow the diet but then how frustrated I get by not being normal, and he has been helping me to understand that just because I feel normal I need to remember that I do have special needs and considerations and to try not to be so frustrated with myself for having to deal with it.

We all need to rant sometimes. This seems like a good place to do that!

Take care -

Stephanie

[SandyShoes]

Thank you all for understanding, wow...its great to have a place to come and just rant it all out of me. I have one person who I know, who has auto-immune allergies/diseases, and she and I get together once in a while to swap horror stories. Besides that, no one understands. Like some have mentioned...they may have compassion, but they dont GET it. My husband has yet to get it through his head that I just cant say screw it and eat a cookie. "Awww...go on, its just one..."....

My daughter gets it more than he does.

I agree.....that this makes you totally, totally obsess over food. Not one day goes by where I am not thinking...can I eat that? Whats in it? Do I want that? God, corn again? What else can I eat? How will I feel after I eat it? Does it taste gross?

Thank you all for being here, this is a great place.

[laurelfla]

I started seeing my former psychologist again this past summer (after 4 years off) and he has been helping me with this a lot. I spend a lot of time telling him how "normal" I am and feel when I follow the diet but then how frustrated I get by not being normal, and he has been helping me to understand that just because I feel normal I need to remember that I do have special needs and considerations and to try not to be so frustrated with myself for having to deal with it.

<{POST_SNAPBACK}>

i have my second appointment with my therapist this afternoon and i wasn't sure exactly what to talk about, although i had some ideas... until a friend called just now and told me that people are going out to dinner tonight for another friend's birthday...

now, these 2 girls are probably my closest friends here. i think i've made it abundantly clear that (since i've been diagnosed pretty recently and i'm still trying to figure out what's ok and what's not to eat) i'm not eating out. and yet i continue to get invitations from people WHO KNOW THAT to "grab lunch", "get together over dinner", etc. What the crap?!! i realize that it is her birthday and my needs are not that important here. i didn't say anything either. i've said it enough already. so now i have to go now and salivate over other people's food and just have a drink and field the questions and feel sorry for myself, because after all it is her birthday and i don't want to be so selfish that i don't celebrate with her. this is exactly the situation i've been trying to avoid, but it looks like tonight i will just have to suck it up.

i'm kind of ashamed of myself for this post. but there you have it, folks. celiac so far is bringing out the worst in me. i have a picture in my head of what acceptance of it will look like, but i am just not there yet. i'm sure it will come.

[skoki-mom]

Hey Stephanie, here's your medal <pins medal on Stephanie> lol

Yes, it's nice to have a forum where people understand! I'm a regular poster on a message board for mom's (all our kids are the same age, we've been together over 5 years), and I hate to whine there because one of my friend's DD is fighting leukemia and another who's DS has chronic gut issues with GERD (reflux). I feel like what they have is soooo much worse and I feel like a pill for complaining. But, they also have no idea how hard this is! I posted that my celiac disease tests came back +, and they were all sympathetic like "oh that sucks" and "I could never do that, I love pasta", stuff like that. I challenge anyone to do it even for one day and see how hard it is! Not just hard in terms of willpower, but logistically hard too! I never used to obsess over food, now I've turned into "one of those types" <sigh>. I just ate a lunch of raw cauliflower because I tried peanut butter on styrofoam and it just wasn't cutting it. All the while cooking Kraft Dinner for my DD.............

[skoki-mom]

i'm kind of ashamed of myself for this post. but there you have it, folks. celiac so far is bringing out the worst in me. i have a picture in my head of what acceptance of it will look like, but i am just not there yet. i'm sure it will come.

I feel a lot of shame too, for feeling sorry for myself. You're dx was only a couple of weeks ahead of mine, I am so right there with you! I feel like a jerk for complaining, but the fact is, celiac disease has been forefront in my brain almost every minute of the day since my results came in. On the outside, everyone would probably say "oh, she's handling it really well", being very "matter of fact" about it, but on the inside, I'm still grieving deeply for what I percieve I have lost and the fact that it will never ever change.

[Wandering Hermit]

I have always been a bit of an introvert, but have, as I got older, tried to come out of my shell a bit. celiac disease has turned me right back into a hermit. Oh well. At least I have a family now.

[tarnalberry]

I agree.....that this makes you totally, totally obsess over food.  Not one day goes by where I am not thinking...can I eat that?  Whats in it?  Do I want that?  God, corn again?  What else can I eat?  How will I feel after I eat it?  Does it taste gross? 

<{POST_SNAPBACK}>

You'll find that obsession fade (though not totally go away) over time as the diet becomes second nature. You'll fill your kitchen with safe foods, you'll know what you can and can't have the way you already know what you like and don't like, and you'll find all kinds of alternatives (instead of corn as a side dish for carbohydrates, there's rice, beans, millet, quinoa, lentils, root vegetables, amaranth, etc...) It won't entirely go away, but it won't be as overwhelming and you'll have safe spaces where you won't have to obsess.

[fisharefriendsnotfood]

To the person who said they feel that everything they loved in life is gone now that they're gluten-free, I think that's terrible. How can FOOD be the one thing you love in life? I think that being gluten-free will give you the time to take up something you really love, like a hobby or sport, like photography or writing or something. I know you'll begin to see the light soon, so good luck!

[debmidge]

It understandable for someone to say that food has been very important to them and now it's taken away. Food can be the one thing someone loves in life. Everybody is different and shouldn't be made to feel bad that they have/had a healthy interest in food: whether eating or cooking different foods. A hobby or sport isn't quite the same thing as creative cooking and eating different foods. I can't see the sport/hobby equivalent of making Christmas cookies. For me, I'd prefer cooking.

In the early days of eating gluten-free the newly diagnosed is still processing all of this new information and could be heartsick over losing certain foods or realizing that they have to drop their favorite restaurant as they refuse to accomodate them, or their favorite foods do not have a gluten-free equivalent -- and until the person learns what foods can still be eaten but with different ingredients, they are at a loss.

Food is a necessary to survive and some people have a stronger tie to it than others. With all due respect, to label this desire to survive as "terrible" is hurtful and sitting in judgment of others based upon your own style of living. As the person said, it's the "One" thing in life they loved - they didn't say "only thing."

[Nantzie]

I agree debmidge. Food is so connected with family, memories, celebrations, as well as just enjoying dinner and talking with your family every night. Sometimes you love food because it brings you comfort when you're hurting. Sometimes you love food because it brings back happy memories. Sometimes you love food because you love the process and the art of cooking. Sometimes all three.

This Christmas is going to be really hard for me if I have celiac disease because while I was growing up, my mom, dad and I would make seven kinds of Christmas cookies every year. It was really special and so much fun. They were mostly old Scandinavian and German recipes and we ONLY made them for Christmas. Well, my mom died of breast cancer the December I was 23, but my dad and I kept up the tradition together. Then, last Christmas my Dad died of stomach cancer. So making Christmas cookies is one of the most important ways I have to stay connected to my parents. If I have celiac disease, knowing that I might lose that just kills me. So I know what she means about loving food. Sometimes, for whatever reason, good or bad, it's all you've got.

I'm hoping that with all the good gluten-free ingredients I've been hearing about on this board I'll be able to duplicate the recipes pretty closely and I'll be able to share them with my kids and keep the tradition up as they grow up too.

Nancy