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Yenni

Fear I'll Never Get Well

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I know I am only in the beginning of things. I just got my Enterolab results; Gluten & Casein were both positive. Possibly Soy too. Soy was 9 and I seem to feel icky from it.

I started my Gluten free diet in May, stopped with Casein a while after. Ate Soy up until now. more or less

I have had many changes already but I still feel so tired, my stomach isn't normal. I dunno. I feel I have a very long way to go before I can feel like 5 years ago. Before all of this started.

I feel like a completely different person now. I so long for the day I will have normal energy. Not feel old like I do now.

I guess I fear I will never get well. :(

Did anyone else feel this way? Was it hard for others to get well? I know I have gotten glutened many times. Things I didn't realize I had to watch out with. Didn't realize I had to be so careful.

Will I get well? Will I get back to normal? Anyone else ever feel this way?


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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akJenny, I felt very much the same way you felt at the beginning. My first thoughts were dark and I was thinking, oh well this is the beginning of the end. Told you they were dark. I doubted I would come right. That was 9 months ago.

I think we go through a grieving process, as we are grieving for how things were, and eventually you will go through disbelief, and anger and alot of other emotions until you come to acceptance. I think it took me a while to get to the acceptance stage, maybe 6 months.

I have nearly got the diet sussed, and just cook everything from scratch so that there is not too much stress from getting glutened. I still occassionally get glutened, but the times are getting fewer and farther apart.

I am smiling again, it could be because I am on holiday and have had a good week food wise.

But hang on in there, it will get better and easier to manage, just be gentle on yourself and don't expect too much too soon.

Catherine

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akJenny, I felt very much the same way you felt at the beginning. My first thoughts were dark and I was thinking, oh well this is the beginning of the end. Told you they were dark. I doubted I would come right. That was 9 months ago.

I think we go through a grieving process, as we are grieving for how things were, and eventually you will go through disbelief, and anger and alot of other emotions until you come to acceptance. I think it took me a while to get to the acceptance stage, maybe 6 months.

I have nearly got the diet sussed, and just cook everything from scratch so that there is not too much stress from getting glutened. I still occassionally get glutened, but the times are getting fewer and farther apart.

I am smiling again, it could be because I am on holiday and have had a good week food wise.

But hang on in there, it will get better and easier to manage, just be gentle on yourself and don't expect too much too soon.

Catherine

akJenny

I often felt (and occassionally still do) like you do. I am working on 8 months gluten-free. It is daunting, especially before I got paranoid and decides to only eat things I made myself, and, even so, I still don't feel %100. But it WILL get better. It DOES take vigilance, though. Do you have a support system- friends, family? I hope so. If not, there are lots of very knowledgable people on this board who have felt very much like you. Come here for support in this. Just keep hanging in there and READING EVERY LABEL!!!

Take care and feel better,

lisa

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I can relate! I'm at 8 months gluten free. Since going gluten free, I didn't see any results for a long time, or even sometimes seemed WORSE than before, and felt extremely hopeless...like, yeah it is all over and I'm so messed up now I can't ever get to good health again.

Finally I did have some really good days, although I think they were still not really normal, but better than I've had for a long, long time. It still goes up and down, but that string of really good days gave me some hope. When the hopelessness sets in, sometimes I read other people's experiences here, and I realize that I am doing better than I sometimes think...and that my experience isn't that unique. There are lots of people going through it, and it DOES get better!

I have often wondered whether there is some kind of depression that normally sets in (some chemical-in-the-brain disturbance or something????) during the first several months of "gluten withdrawal," if there is such a thing. I've been depressed before, but some of the hopeless feelings I've had on and off are unusual for me, so I'm just wondering. I think it's normal to worry because you do have to wait so long to see anything improve. It does eventually improve, though. There is a light at the end of that tunnel.

Reading posts all over this message board, many times in tears, has been a real life saver for me in the bad times, or just the worrisome times.

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Thank you for giving me hope. :)

There is a sadness about this. I know it will go away.

It is just the feeling of never being well that is so hard. Being so tired.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Jenny - it has been really up and down for me also, I am 8 months gluten-free. Initially felt fantastic, then crashed, up again for the longest period of well-being in my life, then a crash again....I have heard that it can take up to two years to completely recover, but can be less time when you're younger.

Are you eating lots of processed/packaged gluten-free foods? I don't think those are that good for us, really (not to mention ridiculously expensive!). I make sure to eat lots of fruit/veggies adn lean meats/fish, limit my sugar, and just try to eat as much fresh food as possible. I gained 15 pounds removing gluten, and have to watch my weight for the first time in my life....certainly don't get to eat the junk I used to - but that's actually a blessing.

When my energy is up I take the dogs for very long, very brisk walks at least 4 times a week...that seems to help, too.

Hang in there, and keep coming back to this board - you will learn so much and not feel so alone.

blessings - :)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Jenny - it has been really up and down for me also, I am 8 months gluten-free. Initially felt fantastic, then crashed, up again for the longest period of well-being in my life, then a crash again....I have heard that it can take up to two years to completely recover, but can be less time when you're younger.

Are you eating lots of processed/packaged gluten-free foods? I don't think those are that good for us, really (not to mention ridiculously expensive!). I make sure to eat lots of fruit/veggies adn lean meats/fish, limit my sugar, and just try to eat as much fresh food as possible. I gained 15 pounds removing gluten, and have to watch my weight for the first time in my life....certainly don't get to eat the junk I used to - but that's actually a blessing.

When my energy is up I take the dogs for very long, very brisk walks at least 4 times a week...that seems to help, too.

Hang in there, and keep coming back to this board - you will learn so much and not feel so alone.

blessings - :)

I am trying to eat as much unprocessed food as possible. In fact I don't eat much procesed food at all. Mostly rice, pork shops, ham, potatoes, sallad, hot gluten free cereal, chicken..

My big problem is that my husband and I do not live in our own place (long story short we live with his folks because of money and a move across the world) and it is VERY hard for me to make anything in their kitchen. It is full of crums all the time and I can't use the Kitchen Aid and stuff. And I can't buy my own because there wouldn't be room, probably wouldn't be allowed by my mother in law to have it in the kitchen and it would get cross-sontaminated anyways so...I have problems with getting a varied food intake. :(

We are hopefully going to be able to build our own little house this spring and then I will be able to start baking and stuff. Eat more different stuff. Made from scratch.

I dunno. It makes me mad sometimes. It is very hard to do this in this house. For example I got gluten, soy and corn free dog food for my dog so I wouldn't get sick being around her. I love my dog so much and spend all of my time with her. Well, and then I told the family not to give her gluten snacks, but they do daily anyways. :angry:

Well, I got a bit side tracked there. Sorry.

So I am trying with the food. Feel I eat the same stuff all the time. Bummer thing is I am allergic to almost all fruit. Can only eat Bananas and Melon. Citrus is okay too but it is too strong for my stomach now.

Thanks for the suggestions though. :)


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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I don't have much to add, but yes, things will get better. And you will be well again. It's hard not knowing how long it will take. Patience is hard to have when you're sick. For me, was gradually getting better, but one day I woke up and knew I wasn't sick anymore. Hang in there, and the day you're not sick anymore either will come.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I've been gluten free two years now and I can tell you it does get better! :) At one year I still was very much up and down from day to day.

Just an idea... a "mood food" that I like is some dark green veg (broccoli, darker green sorts of lettuce) with salmon... that seems to have a combination of vitamins and nutrients that really picks my mood up.

Pauliina

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