Getting Tired, Depressed, And Frustrated

[Korwyn]

How did you all cope? The euphoria of feeling halfway decent for the first time in years is starting to wear off as lingering symptoms and new/hidden intolerances crop up. I'm currently getting ready to tackle the GAPS diet (similar to the SCD) but my diet right now is pretty limited. I was feeling a lot better for a few weeks, I keep getting soyed and glutenated (I have as bad a reaction to soy as I do gluten - possibly worse). It takes me about a week to recover.

I'm just so tired of feeling sick, so tired of feeling constrained in my diet and choices, tired of feeling tired (some days are good, many are not). The last few days I have barely been able to function and my job is highly mental and sometimes physical. I'm exhausted physically, emotionally, and mentally.

My wife is wonderful in trying to support me, and so understanding, so I'm incredibly blessed, but I can't keep dumping emotionally on her all the time. It isn't fair to her or us. Our local GiG groups meets once a month, but it is fairly small (our entire county only has 80k people and it is a big county).

I'm not an overly outgoing person by nature and so going out and interacting with people is tiring for me as I have to expend so much emotional energy on it under normal circumstances (when I was healthier) that even the thought of getting out of the house and dealing with people is more than I can handle. I don't have the mental energy to play on the computer, or even break out my guitar or drums and play. And even reading is tiring right now (which for me is saying something since I average two books a week).

I'm great at encouraging other because I know in my head that it takes time, but emotionally I'm not doing so well myself. :/

How do you cope? Please give me some ideas?

[The Fluffy Assassin]

How did you all cope? The euphoria of feeling halfway decent for the first time in years is starting to wear off as lingering symptoms and new/hidden intolerances crop up. I'm currently getting ready to tackle the GAPS diet (similar to the SCD) but my diet right now is pretty limited. I was feeling a lot better for a few weeks, I keep getting soyed and glutenated (I have as bad a reaction to soy as I do gluten - possibly worse). It takes me about a week to recover.

I'm just so tired of feeling sick, so tired of feeling constrained in my diet and choices, tired of feeling tired (some days are good, many are not). The last few days I have barely been able to function and my job is highly mental and sometimes physical. I'm exhausted physically, emotionally, and mentally.

My wife is wonderful in trying to support me, and so understanding, so I'm incredibly blessed, but I can't keep dumping emotionally on her all the time. It isn't fair to her or us. Our local GiG groups meets once a month, but it is fairly small (our entire county only has 80k people and it is a big county).

I'm not an overly outgoing person by nature and so going out and interacting with people is tiring for me as I have to expend so much emotional energy on it under normal circumstances (when I was healthier) that even the thought of getting out of the house and dealing with people is more than I can handle. I don't have the mental energy to play on the computer, or even break out my guitar or drums and play. And even reading is tiring right now (which for me is saying something since I average two books a week).

I'm great at encouraging other because I know in my head that it takes time, but emotionally I'm not doing so well myself. :/

How do you cope? Please give me some ideas?

I would strongly recommend focusing on one (or preferably two or three) dishes that you absolutely know will not make you sick and eat that/those at every meal for as long as you can stand the monotony. Because it's a lot better to be bored than to be sick. You might also want to supplement B12 at least, or preferably all the B vitamins. And you might want to talk to somebody about anxiety disorders, though hopefully when your B12 levels are up to snuff, you'll find your social anxieties have melted away. (I did.)

Good luck to you. I hope you find it easier than you anticipate eliminating soy, too, and that you're feeling better right away.

[Korwyn]

I would strongly recommend focusing on one (or preferably two or three) dishes that you absolutely know will not make you sick and eat that/those at every meal for as long as you can stand the monotony. Because it's a lot better to be bored than to be sick. You might also want to supplement B12 at least, or preferably all the B vitamins. And you might want to talk to somebody about anxiety disorders, though hopefully when your B12 levels are up to snuff, you'll find your social anxieties have melted away. (I did.)

Good luck to you. I hope you find it easier than you anticipate eliminating soy, too, and that you're feeling better right away.

Thanks Fluffy -- I love your display name and avatar pic BTW

Well I've been on Lexapro for 6 weeks for the anxiety, but my Dr. is tapering me off it as I think I'm having side-effects (hot flashes, sweating, stuff that didn't start until after I started the Lexapro).

I'm taking supplements (gluten-free/SF/CF) including sublingual B12 and probiotics. Right now my diet consists of "green drinks", fruit, meat, eggs, veggies.

The "green drinks" are blended (frapped) drinks of variously consisting of (depending on my mood) rice or almond milk, sometimes ice, lots of spinach, kale, dandelion greens, various other veggies, gluten-free peanut butter, fish oil (Omega 3 fatty acids), kelp powder (lots of trace minerals and nutrients, B, lithium, potassium, K, A, D), mixes of fruits (mango, banana, kiwi, apple, are our favorites), and sometimes sometimes raw honey.

It isn't the boredom with the food so much (I guess) as partly the lack of control I have over this. And the exhaustion.

How do (or did) you handle the emotional/psychological side ? Or did you have to deal with that as much?

[nikky]

*Hugs* Sorry to hear your having such a hard time.. but if it helps, a lot of us feel overwhelmed at first so your not alone.

A good thing some people find (including me at the start) is to treat your self every weekend with your favourite gluten free (and in your case soy free) food or by doing something you really enjoy, weather thats simply taking a short walk with your family or going to the sinema etc.. this gives you something to look forward to at the end of a tough week. The better or worse you feel you could make it longer or shorter until you next treat.. and dont foget to give yourself smaller treats inbetween to keep spirits up.

As Assasin said you might be better off sticking to about 3 'safe' meals for as long as you can stand it, this will help your body heal and allow you to discover some more alternatives... vitamin supplements will help replenish your body's deminished stores and hopefully help get your energy and confidence back. I dont know if you can get them but nutren build up milkshakes and soups are really good for energy boosts and helping to replenish vitamin and mineral stores.

Good luck, get well, and remember your never alone, we're always here if you need us and it will get better, awareness is rising and more options are becoming available for all of us

[LDJofDenver]

I have my days, too, though they are few now (mostly just when I get glutened). Looking back there were many spells that I don't know how I got through, don't know how I managed to go to work every day, etc. From roving pins and needles (peripheral neuropathy), migraines, exhaustion, shingles, brain fog, stomach and intestinal upset . . . the list goes on.

Now that I'm diagnosed and recovering, I just try to focus on what I CAN have, instead of what I can't have. And I remind myself that, while it may be trying at times, at least my malady is controlled by diet. I don't have to prick my finger 30 times a day and give myself insulin injections. I try to maintain the attitude that even if I'm having a struggle, I might as well be "out among the living" instead of just hanging out in the house doing nothing.

Here is a link for a grocery shopping guide for mainstream products that are both gluten free and soy free. You might think about investing in one. Something like this would simplify your day-to-day shopping, I have the gluten free one.

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You're on the road to recovery, just keep pushing through it - one day at a time, as they say.

I wish you well.

[The Fluffy Assassin]

Thanks Fluffy -- I love your display name and avatar pic BTW

How do (or did) you handle the emotional/psychological side ? Or did you have to deal with that as much?

I was lucky enough that going gluten free totally changed my emotional/psychological life for the better; my neuroses just evaporated. Admittedly, this made room for the Asperger's Syndrome that I'd no doubt had all along, but which had been shoved out of the way by all the anxieties and neuroses. But still.

Also I'm lucky or unlucky enough to be silent celiac, so there's little to notice in the way of short-term symptoms. Which is good in the sense that I don't have the panoply of annoying symptoms that others here suffer from, but bad in the sense that I can't necessarily tell if I've been glutened or not.

Also also, there's something else, but I don't know what it is. Some intolerance or sensitivity that still makes me gassy and scared to get too far from a bathroom, but I can't nail it down. Might be animal fat, or grease in general. Anyway, I'm pretty sure that gluten's the only thing that could kill me prematurely, so I'm focused on avoiding that and will nail down the other thing as best I can through elimination. Better not be soy; don't want to give up my gluten-free tamari!

Amelia the cat thanks you kindly and licks you virtually on the nose.

[Mother of Jibril]

The "green drinks" are blended (frapped) drinks of variously consisting of (depending on my mood) rice or almond milk, sometimes ice, lots of spinach, kale, dandelion greens, various other veggies, gluten-free peanut butter, fish oil (Omega 3 fatty acids), kelp powder (lots of trace minerals and nutrients, B, lithium, potassium, K, A, D), mixes of fruits (mango, banana, kiwi, apple, are our favorites), and sometimes sometimes raw honey.

What brand of rice milk are you using? Some people have reactions to Rice Dream (they use barley enzymes in the manufacturing process).

I think it takes time to figure out some new favorites that you can eat without thinking. Do you like Indian food? I recently discovered the joy of ready-made Indian sauces They rarely have gluten or soy... so you can just open the packet, stick it in the microwave, and pour it over rice. If you've never used one before, a rice cooker makes it SUPER easy.

[Korwyn]

What brand of rice milk are you using? Some people have reactions to Rice Dream (they use barley enzymes in the manufacturing process).

I think it takes time to figure out some new favorites that you can eat without thinking. Do you like Indian food? I recently discovered the joy of ready-made Indian sauces They rarely have gluten or soy... so you can just open the packet, stick it in the microwave, and pour it over rice. If you've never used one before, a rice cooker makes it SUPER easy.

I use Pacific Brand, which is gluten free. The first week of so of being gluten-free I was using Rice Dream, but after reading and checking up on it more we dropped it. And I do have a rice cooker.

[GFinDC]

It can be tough sometimes, that's for sure. When I am in bed and don't feel well, my cat Muffin likes to sit on my chest and knead my stomach with her claws. She seems to think it helps, so what do I know? It's kind of like accupuncture for the tummie. I also try to catch naps whenever I can. I made the mistake of drinking coffee and tea to help keep going and that just made me feel worse. So no more of that. I read the Bible a lot and pray about it too.

Just another thought for you. Some of us have thyroid issues as well. If you haven't read about them, you might want to check into goitrogens. Goitrogens are foods that suppress the thyroid's ability to absorb iodine. Maybe it would be interesting for you to try avoiding them for while, to see if it affects your condition. Spinach and kale are in the goitrogen camp, and peanuts. Just a thot. Oh yeah, some rice milks and so on have soy in them also.

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[Samma]

It is very hard, or I should say was very hard in the beginning. One day at a time is good advice, and it also helps to remember how you felt or what symptoms you were having. This might not sound nice either but it helps me to see other people and how they look because of what they are eating, namely gluten. Whatever works. For me Gluten in poison and I know it, so even if someone told me I could eat it....I WOULDN'T. And depending on your symptoms, I believe one day you will get to feel this way too.

I wanted to tell you something that you probably won't appreciate hearing right now, since your diet is already limited, but it's the truth, and unless you eliminate all of the offending foods your symptoms will not improve completely. There are other foods that might be causing your continued symptoms, two of them are dairy and corn. Since you've already eliminated gluten and soy, those are two others that can cause similar symptoms. And if you've had a leaky gut which most of us with Celiac/gluten intolerance have had, antigens from those foods have had the chance to leak into your bloodstream causing a reaction, so when you eat them you have symptoms. I hope I explained that well. I am a lazy writer but that's the gist of it, I'm sure there are others who will get more technical about it.

I sympathize with you totally, and I hope things improve, remember what you are doing is good for you, and there will be a payoff....take care...

[linda7276]

The above post (samma) was actually mine, I had to create another account because I forgot my log on....sorry for the confusion...