This disease is so depressing even without flaring

[tlras]

Hello all,

I've been doing pretty well. No meds since December pretty much and just a one-day flare so far which was one day last week after eating some Amy's GF/DF pizza. Loaded with soy (not sure if I react to soy) and fat, fat, fat! Had bad bloating that evening and the next day was nauseous....no D. That passed and am doing well. Just have to remember....moderation, moderation!

I have been so depressed the last few weeks. My doctor is weaning me off my anti-anxiety meds and I just told her today that this is not a good idea....feel like I'm going insane. So shocked I haven't flared as I've been crying on and off for the last week. I had her check all my hormone levels as I know I'm pre-menopause. Luckily she has decided to get me back on my original dose of anti-anxiety med (Librium) and I now need to see a therapist. I've always had chronic stress but with the addition of these nasty diseases (Celiac and LC) she thinks I would benefit from a therapist as this is too much for me to handle even though I'm doing well.....totally not getting that. So off to therapy I go. Luckily, they will not try to wean me off my Amtriptyline or they'd have a fight on their hands.

This last week I wanted to eat gluten so bad....this hasn't happened before. Of course, I didn't as I know I'd probably have a worse reaction now that I've been off it for 9 months. It's just that now all of a sudden my diet restrictions are really getting to me. So tired of the same ole foods but know it's for the best. So I'm hangin' in there but miss my old life!

Just wanted to vent a little. I don't know what I'd do without this forum.

Terri

[Zizzle]

I hear you. I almost devoured a Ritz cracker while preparing my daughter's lunch today...just becuase it was there and I had a sudden burst of mindlessness. It's unfair to have to live this carefully ALL THE TIME.
Keep in mind that Celiac is associated with depression, so over time, your depression should improve naturally as you heal from the diet. I know I had persistent low mood for years and the mood magically lifted when I went GF. It was even better when I started prednisone! Vent away.

[Julie]

Hi,

I know how you feel. I am stressed all the time. I feel great, physically. The thing is, this disease takes so much out of you and when you are finally healing... Your constant fear of these terrible flares just creep up on you.

It's not easy living with the restrictions, you're right. But try to see it this way: if you do eat whatever you feel like eating (gluten, dairy, ...), you will be punished. I can handle the restrictions by putting my mind on other things. My family, friends and boyfriend have already suffered enough with my disease. That's the main reason why I can deal with restrictions in my diet.

I know it's not easy, but remember that you are welcome here whenever you feel depressed or sad.

I have LC too by the way.

Keep it up. You can do this.

Grts

Julie

[carolm]

Terri, I also had 'food burnout' for awhile-- especially as I started getting better. The bland chicken and rice just weren't doing it any more.

One of the best things I did was search for recipes. I got the Paleo Comfort Foods cookbook. I have to be GF/DF/EF/SF and I can't have acid based foods more than once a week. Gotta keep the sugar low too. Anyway, they had a few recipes that were like manna from heaven to my bored palate. A sausage and gravy made with turkey. My family loved it too. Now when I make it I have to make enough for everyone. There was a fried chicken recipe with coating made from almond flour. I've used the same coating on cod and it was a hit. The seasonings in the recipes are really very good. Online I found a chocolate chip cookie recipe that was awesome and an oatmeal cookie recipe (I'll make these for my daughter but I don't do well with oats in general). If I fixed a roast one day then the next day I could fix some au jus and saute some onions, and have French Dip sandwiches using a GF roll. At Thanksgiving I decided to use rice bread for dressing. It's a dense bread and as a bread it's not so great but as dressing it was fabulous. I used my favorite old family recipe for the seasonings.
I'm almost embarrassed to admit what having these few recipes have done for my mood. When I fix a lunch to take to work and I can add in some of that stuffing-- it's a real treat to have that in the middle of my day. My latest creation is to take some of that same turkey sausage and a spoon full of Classico pizza sauce, put it on the slice of rice or tapioca bread and bake it at 400* until the bread is crispy. If i feel daring I put a little parmesan cheese on it. But it's taken away the pizza cravings and is something i can have twice a week. I also have scouted out 3 local restaurants that I can eat at so when we go out with friends it's no sweat anymore.

I know that this won't help all of your feelings of sadness but it sounds like the meds are helping you to address that. I think what new recipes did for me was get me to see that it won't always be about sacrifice but about substitution.

Now I feel like I'm making progress and sacrificing very little. This takes time but it is a great confidence and morale builder.

I hope you find something that makes you feel that things will be okay eventually. It's not a quick process.

[Julie]

Hi,

Carol, the recipes are a great idea. I have tried a lot of things too thanks to a colleague who has celiac. We exchange recipes all the time!

I can't wait to invite some friends over and have a low-fat GF, dairy free party.

Terri, it's worth it. And Carol is right, things will eventually be better.


Grts

Julie

[tex]

she thinks I would benefit from a therapist as this is too much for me to handle even though I'm doing well.....totally not getting that.

I don't get it either. Weren't you doing OK before she tried to wean you off the antidepressant? Isn't that what started all the recent problems? Maybe she should have prescribed the therapist for herself.

Seriously, if you do that I hope that you can find one who is familiar with food sensitivities, so that she or he might be able to actually understand your issues.

Tex

[wmonique2]

TERRI!

WHERE HAVE YOU BEEN? You need to come back here when you get down. You know you can't do it alone! I haven't seen you lurking around and I thought maybe you went on vacation for spring and decided to have fun and take a break from us.

I was about to PM you when I saw your post.

Look girlfriend, I've had 5 miserable weeks of oats, grits, mashed potatoes, banana, apple sauce and bland chicken. And then I started feeling better, decided to have a massage and that sent me reeling because it was deep tissue and BROUGHT BACK all my nausea for a week now. So, last night I capitulated and took Elavil and today I got up feeling like Archangel Michael saved my French derriere once more.

I so am happy you're back!

Get in the kitchen and cook some of those recipes Carol talked about!


Love,

Monique

[wmonique2]

TERRI-------just want to add that it wasn't easy on me. Not eating and sick all the time. I had at least one meltdown everyday. Sometimes more...Thank God for Elavil.


Julie----glad to see that you are posting and sounding good. Your last post on another thread had us worried ...


Monique

[Leah]

Big hugs are coming your way Terri. So sorry to hear that you are feeling so down. Hope the meds kick in soon.

We all know what being on this restrictive diet does to our psych. It sucks. I go up and down with how I feel about it. I have also wanted to eat some gluten recently. But just thinking that it could throw me into a full on flare kept me away. I sometimes do take my chances with other things though ( because I know that the reaction will be temporary) ... I ate a piece of milk chocolate the other day. When My husband and i had some mexican food yesterday, i noticed there were peppers in my enchiladas AND a tomato based sauce. I plowed through it! Fortunately, I was ok.

You were feeling pretty good there for a while. I am sure you will get back to that place again.

Vent away!
Leah

[tlras]

Thank you all so much! I'm feeling better already knowing I can take my Librium every day again! Whew!! My MC is still well controlled.

@Tex....You are so right. Was doing fine till she decided to start weaning me off my Librium. I think I scared them a little today so they are now letting me take my usual daily dosage again. Maybe if I was a lot younger I would consider but right now all I can think about is my quality of life not quantity. I need these drugs or I just can't function right. My jaw pain was coming back badly and couldn't sleep well. Unfortunately the only thing to get rid of that pain is NSAIDS and I refuse to take those so only been taking Tylenol which doesn't help as well. So in getting off Librium has created another set of issues leading to even more meds. I think she now gets it though. I have other issues besides these nasty diseases....what brought them on in the first place...so need therapy for that. Will see how it goes.

@Carol....oh...thanks so much for the book idea and the recipes. Since the Amys GF/DF pizza didn't sit well with me, I need a pizza alternative....will have to try that!! Thanks so much for everything.

@Monique....My sister!! I have been on here but only reading. Read your latest post and got depressed...lol....sorry. But it's nice to hear what others are going through...definitely helps. ELAVIL is the bomb!! I wanted to tell you to get back on it but didn't want you to think I was bossy or something. It's definitely my miracle drug. So happy you are feeling better. Bummer about the deep tissue massage....wth!! Just take the smallest dosage of Elavil you can so you aren't too too hungry all the time. Eventually I had gotten over that but still crave the sweets somewhat. But we have awesome willpower, don't we?! Up for dancing again?

@Leah...thank you so much! And you did well with a little milk chocolate?....you brave lady....awesome!!

@Julie...I remember when you first came on board and now you are helping me out. And that's the way things go here. Sounds like you are doing better! thank you for your kind words.

@Zizzle...thank you! Boy, I would love a Ritz cracker right now!!

Love to you all,
Terri

[tlras]

By the way, there have been plenty of milk chocolate eggs in my house....hubby is not eating them quick enough....but have managed to stay away from them. But only because I'm not sure they are GF or not. Probably will dream about chocolate tonight! haha

Terri

[wmonique2]

Terri,

Yes, we belong to the Elavil sisterhood! I only take 10 mg but it makes me so darn hungry all the time. And that's why I stopped taking it and went on allegra which worked for a while. And then it stopped working and symptoms came back. And I resisted going back on it but I've been sick for too long now..It's amazing how in 24 hours I was almost normal and I went out today to meet my starbucks buddies. I even ate a normal dinner (as normal as it gets for us) instead of oats or grits. I may even consider going back to belly dancing after more than a month absence :-)

Anyway, I think I am going to do the MRT test so that I can find out what I should stay away from. I'll never heal otherwise....enterolab wasn't enough...I hate spending that kind of money on a darn test but it beats taking toxic meds and being sick all the time. You didn't take it, did you? I never heard about you taking enterolab either if I am correct.

I hope your spirit will lift up. Great that you stand up to your doc. They don't always know what's good for us or listen to us. If a doc doesn't listen to you, change them. There are others out there.

Love,

Monique

[tlras]

Monique,

I have tried to get off Elavil/Amitriptyline a few times and was only able to successfully get off it when I got pregnant. When I first tried to get off them I did have nausea for days and headaches as well....no fun. I'm glad you're back on it and feeling good. I sometimes wonder if I did quit taking it if my MC would go out of remission. Not taking the chance. Hope you get back to the belly dancing soon. I have a latin workout dvd I use though it totally raises my heart rate up too high but so fun to do. I just love to dance.

You are right, I haven't done Enterolabs or MRT. I've had too many other medical bills and so been putting it off. Trying to see if I can get by without those tests....so far so good. Wary on taking them as I'm afraid it'll tell my I have an intolerance to rice even though I have no physical issues from eating rice. That would send me into a deep depression...lol. Corn as well as I love my corn chips! But may have to break down and take the tests one day.

Good luck on the MRT....is that just as costly?

Terri

[wmonique2]

Terri,

To answer your question: MRT is even more costly than enterolab. It sucks. The test alone is 600 plus finding a lab or going through a dietitian for taking a blood test and shipping UPS, all of it on your penny. I am looking at 800-900. I hate spending that kind of dough so shortly after taking enterolab. (Medicine is a racket in this country).

I asked for them to send me the list of foods tested and I tell you had I known it then, I probably would have taken just MRT because they have fish and chicken and rice and corn and wheat, in other words almost the same stuff as enterolab except 150 items as opposed to the 11 antigens enterolab tested for. It would have been money better spent. If you ever decide to pony up the money, check both of them before you make a decision.

And you're right, I hate to think about taking out even more than I am already deprived of. If I take rice or corn out, don't know what the hell I'll eat. I'll be sucking on air. Already I eat no fiber to speak of because of this active inflammation. So only bananas (and some canned peaches), no vegies, just occasionally very well cooked green beans.

If they tell me to cut off rice, I'll be suicidal :-) and homicidal ... Food has become my enemy. It was always so with diabetes but now it is seriously worse. Taking care of my health has become my ONLY occupation. (Tell me who is the dude who's going to want to go out with somebody as seriously effed up as I am? :-)

I'm on day 2 back on elavil and what a difference a day makes! I actually ate this morning. I should have gone back to it when I was seeing that I wasn't getting out of this flare 4 weeks ago. My colon was hurting so much that I thought if I go on soft foods it would give it a chance to calm down. And it did. I hardly feel any more pain on my left side by the colon but I wasn't getting rid of the heaviness, nausea and lack of appetite.

I am staying on elavil even if I become 300 lbs!

Monique

[Jazi]

Hi Terry,

I'm fairly new here... going on week three of GF, DF, SF, no fresh fruits or veggies, will be on entocort for two weeks this Saturday. Because I live in NY State and it is so darn strict, I can't have MRT testing or Enterolab. So while I'm eating the best I can, I could still be doing harm by not knowing what I should or shouldn't have.

I am down to 20 mg of Prozac from 40 and was hoping to be off it someday but I may have to wait it out a bit longer. I really feel i need it.

So, I feel for you and everyone else here. This has been quite a challenge.