Feeling Defeated

[TinkerbellSwt]

I feel so defeated and alone with this disease right now. Just the simple things are no longer simple in my life. I feel like everything revolves around food. I cant go anywhere without first taking into consideration whether or not I can eat while there. I ran out of pancake mix this morning and to buy more I need like 5.00. Its so darn expensive. I know I dont have to have pancakes, but its nice on the weekends.

I just found my shampoo and conditioner have wheat in them. (I posted this on another thread too) So, I tried and ordered Purology online. Well dippy me, didnt find the ingredients list on the computer so I just ordered it and there is wheat in that too! I cant use the stuff bought in supermarkets, as I have naturally curly hair and it makes my curls look awful. I dont know what else to do.

anyone have any suggestions?

I feel so alone.

Tinkerbell

[nettiebeads]

I feel so defeated and alone with this disease right now. Just the simple things are no longer simple in my life. I feel like everything revolves around food. I cant go anywhere without first taking into consideration whether or not I can eat while there. I ran out of pancake mix this morning and to buy more I need like 5.00. Its so darn expensive. I know I dont have to have pancakes, but its nice on the weekends.

I just found my shampoo and conditioner have wheat in them. (I posted this on another thread too) So, I tried and ordered Purology online. Well dippy me, didnt find the ingredients list on the computer so I just ordered it and there is wheat in that too! I cant use the stuff bought in supermarkets, as I have naturally curly hair and it makes my curls look awful. I dont know what else to do.

anyone have any suggestions?

I feel so alone.

Tinkerbell

You are not alone. Sorry I can't help you with the shampoo issue - My hair is fine and limp. My daughter can sympathize with the curly hair, but she doesn't have celiac so she can use whatever. Yep, this disease is an aggravation. Sometimes you do want to be able to take a pill and make it all better. But it does force you to be creative. I make a pancake out of my various flours that I have on hand. It's just flours, baking soda, salt and sugar and then mix milk egg and oil in another bowl and add that to the flours until it's just barely thick enough to pour.

Hang in there. I thoroughly understand, but I prefer to look at it as taking a proactive stance on my health and life.

Annette

[CMCM]

I sympathize completely, and I felt the same way at first. But you lose your feeling of helplessness by being very proactive....get all the information you can to begin with. I went into a flurry of reading like crazy to just find out everything I could. I read about 5 books which really really gave me the information which in turn gave me the resolve to do this without fighting it. I posted this list of books elsewhere...if you can't find it, let me know and I'll post them again. Remember that KNOWLEDGE IS POWER, especially with celiac disease.

Second, convince yourself that your discouragement really is entirely of your own making and in your own head, you create it by choice, and you can just as well choose to take a different attitude. What I did was say to myself, "OK, I can no longer eat this or that, but I'm going to find some OTHER things I like instead....not exact subsitutes it most cases, but other things that I actually like quite well." For example, I found and tried the Kinnikinnick K-Too cookies, which are a fabulous replacement for Oreos and they taste so similar that they really do pass! I gave one to my husband just to test (I didn't tell him it wasn't a real Oreo) and he thought it was the real thing. OK...so now if I have an Oreo attack, (which is actually fairly RARE because they are full of sugar and I avoid stuff like that because I want to lose some pounds,) so with or without wheat, I wouldn't want to eat them very often. I'm not about to start eating them a lot just because they are gluten free...they certainly aren't SUGAR free!! But they are out there as an occasional treat.

I was a donut freak....that's a real deprivation for me because I always used to think the ONE sweet I could never do without was an occasional donut (notice I say "occasional"). Again, I tried and actually LIKED A LOT the Kinnikinnick donuts (both the maple and chocolate frosting ones). So I bought them (they are frozen), and on an occasion where I would like a donut they are there to thaw out and enjoy, and they really do satisfy my donut urges quite completely.

I have also limited my bread eating for a long time, but occasionally I want toast with breakfast. I've thus far tried and very much liked 2 different breads, also English muffins and hamburger buns (all Kinnikinnick, again!), and I liked them just fine. So these items are also in my freezer for when I want to indulge. But because I'm careful with sweets and starches, these items aren't a major part of my diet and wouldn't be anyway even if I were eating gluten things.

I've been making my usual recipes (spaghetti, for example) with the Tinkyada rice pastas....and GUESS WHAT....my family (who all can eat gluten at this point) didn't even realize they were something different, and they LIKED it. So there are a bunch of pasta recipes I can still make....although again, for weight loss issues I am going easy on pasta. But there is a happy substitute out there for the old wheat pasta if you get the right brands.

I guess what I'm trying to say is choose the positive path....after years (or a lifetime) of eating automatically and mindlessly whatever is out there, now you can choose to look at this as a somewhat adventurous search for new things that you have never tried before. I have been trying everything I can get my hands on....and with just a few exceptions I am totally pleased with these things I've tried. And my family goes right along with me as I cook all these gluten free things instead of wheat based things (I am NOT going to make 2 different meals!!!) and they LIKE them, and in some cases like them better. Nobody is feeling deprived in the least.

Ultimately....and this is how I choose to look at all this....overall the gluten free (and in my case, also casein free) diet is going to be much much better for my weight and my overall health. That's a good thing. Maybe all of us wouldn't have eaten quite as healthfully without celiac disease...but in the end, IT WILL REALLY BE BENEFICIAL FOR US, ESPECIALLY IN OLDER YEARS!!! We have been nudged into being better eaters as a result. That's very positive!

So point your brain into a positive direction and stay there. Eventually this will all become habit and it will be second nature and you won't be thinking about it much. That's really what happens, and it will be quicker and much more painless if you have the right attitude about things. Remember that attitude is one thing you have total, 100% control over at all time!

[TinkerbellSwt]

Thank you for your responses. I do already feel a bit better about things. I will try new things. I might find something good for me in the process. I just got so frustrated. I think it just came to a head the other day. Thank you for the words of encouragement. I truly appreciate them.

[pixiegirl]

I never really felt defeated or depressed when I first found out I had Celiac but it seemed like wheat was everywhere.... almost impossible to avoid. However I think when one is diagnosed with Celiac you should expect its going to take months, up to a year to really get it and get it all cleaned out of your house, etc.

I cut out the obvious forms of gluten right away (bead, pasta, cookies) but yes I found it was in shampoo and make up... I just looked at it (and still do) as a learning experience, when I find out that I'm using a product that has gluten in it, I just take it out of the mix and move on. If you plan in your head that its going to take a while and accept that, then when you do find a product you "thought" was ok and find it isn't, well I just move on. After a year and 7 months of Celiac I'm still learning.

Just don't beat yourself up, if you were trying something else new... golf, horseback riding, a new job, you'd never expect yourself to be perfect the first time out (or the first year out!) so give yourself the same leeway with Celiac. It really does get easier as you adjust.

Susan

[sspitzer5]

Tinkerbell, you're definitely not alone. I have had those same feelings many times over the past year. I've been gluten free for a year. I didn't see too much improvement until I changed soap, my stupid shower soap had wheat in it. So all that time I tried so hard to watch what I ate and never thought about soap that was probably all over my hands, etc. It's really frustrating, but I agree with the others that it tends to get easier over time. I definitely have days where I don't even think about gluten and feel like a normal person again because I've got my eating options figured out. I went to a wedding shower yesterday and couldn't eat or drink anything there, but I wasn't very bummed about it. The cake held no appeal at all.

Anyway, hang in there, it'll get easier (maybe never easy, but certainly easier).

S

[loraleena]

Try Giovanni it is gluten free, natural, and seems to work well with my naturally curly hair. Shakai works good also. You can buy them at Whole Foods.

[Lollie]

I so sorry that you are feeling so bad! I went through that recently, but have somehow come out of it on top. I feel greatful to have a disease that is corrected with food, although I still have tinges when I see the Krispi Kreme or convinience foods I love, but know that I can't have. I just try to remember that I was beyond sick just 3 months ago. I try to remember that I am healthier now, and not just for my self, but for my family! I think it's completely normal to go through some kind of a mourning process with any major change in life, but know that it gets better, it won't last, and that at the end you will come out ahead!!!!

And by the way, I made pancakes for my family this weekend and made them from scratch- not a big deal, easy recipe, they all liked them and I did too! I'll pass on the recipe if you want it, it's better then having to depend on some mix.....

Lollie

[TinkerbellSwt]

yes Laura.. I would soo appreciate your pancake receipe. I still havent had them as I have to go to the health food store to get the mix. I would love a receipe to make out of just the flours. Thanks

Tinkerbell