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So Sick Of Not Feeling Well

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Just a general rant. I'm sick of this, every time I eat something that I -should- be able to have, it's like 'nope, can't have that'. Can't have coffee, can't have chocolate, can't have sulfites, the popsicles I'm eating I probably shouldn't be, that bouillon probably not safe, daiya might not be safe, my stash of spices might not be safe. I can't tell anymore. I'm completely lacking the self-control to write a food diary and introduce 1 'maybe' item at a time. Of course these are all things that are labelled gluten free, many of them certified, and yet here I am.

I've moved to a city of over a million people and I can't even find the goddamned el peto potato bread that I didn't react to. I can't find bacon or sausages that don't give me a rash here. I can't find organic meat nearby (this is huge ethical issue for me even though it's on the backburner of my food list), I can't just shop at 1 grocery store, I can't find food I can snack on without preparation, I feel like I'm always cooking.

And what's worse is that, in all likelihood, I'm feeling so fuccin crappy right now is because of something I ate. To have to purge my entire kitchen again to figure it out...I'm sick of doing that, sick of being weak and keeping eating foods that I know so many other celiacs eat without problems, so I figure 'I'll try it'. Because I have mood swings regardless, because the sun can make me feel sick, because some foods just give me gas without gluten, because so many symptoms of mine could be any number of things. The best thing I can go by is my peripheral neuropathy which takes like a month to go away, but even then it appears that my B multivitamin makes that worse too, stupid B6.

In 2 years gluten-free I feel like I've probably been completely symptom free a grand total of maybe a couple of weeks, a month perhaps.

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In instances like this, i strongly advise talking to your doctor. Food shouldn't cause the list of of problems you've outlined, especially if you have already eliminated gluten from your diet. I know it's not fun to go through the tests and doctor appointments, but you're not going to reach that point where you feel better until you pinpoint what is causing these problems. Good luck!

 

Just a general rant. I'm sick of this, every time I eat something that I -should- be able to have, it's like 'nope, can't have that'. Can't have coffee, can't have chocolate, can't have sulfites, the popsicles I'm eating I probably shouldn't be, that bouillon probably not safe, daiya might not be safe, my stash of spices might not be safe. I can't tell anymore. I'm completely lacking the self-control to write a food diary and introduce 1 'maybe' item at a time. Of course these are all things that are labelled gluten free, many of them certified, and yet here I am.

I've moved to a city of over a million people and I can't even find the goddamned el peto potato bread that I didn't react to. I can't find bacon or sausages that don't give me a rash here. I can't find organic meat nearby (this is huge ethical issue for me even though it's on the backburner of my food list), I can't just shop at 1 grocery store, I can't find food I can snack on without preparation, I feel like I'm always cooking.

And what's worse is that, in all likelihood, I'm feeling so fuccin crappy right now is because of something I ate. To have to purge my entire kitchen again to figure it out...I'm sick of doing that, sick of being weak and keeping eating foods that I know so many other celiacs eat without problems, so I figure 'I'll try it'. Because I have mood swings regardless, because the sun can make me feel sick, because some foods just give me gas without gluten, because so many symptoms of mine could be any number of things. The best thing I can go by is my peripheral neuropathy which takes like a month to go away, but even then it appears that my B multivitamin makes that worse too, stupid B6.

In 2 years gluten-free I feel like I've probably been completely symptom free a grand total of maybe a couple of weeks, a month perhaps.

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I feel your pain on this.  I also have to avoid quite a range of foods.  I don't do well with nightshades, soy, teff or diary.  This makes just about every pre-packaged gluten-free food off limits for me.  I still struggle with the amount of cooking that must take place, especially since I live with wheat eaters who are not willing to make accommodations.  I purchased a good cookbook that follows my dietary needs, and I do batch cooking.  This way I can get away with cooking just a few times a week, and have lots of things in the fridge and freezer to heat and eat at any time.  This also cuts down the amount of times each week that I have to decontaminate an area of my kitchen to work in.  It's definitely not ideal but this is the only way I have found to cut down the amount of times that simply skip meals because I don't feel well enough to clean up after everyone and then try to cook for myself.  Best wishes and lots of luck finding what's bothering you.

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I feel your pain.  It feels much like what I have gone through.  I've been at this 6 years.  In my case an additional sensitivity to oats causes a lot problems.  Gluten free does not mean oat free.  Some celiacs have problems with trace gluten: http://www.biomedcentral.com/1471-230X/13/40

I have also had problems with fat malabsorption which seems to be from exocrine pancreatic insufficiency: http://www.celiac.com/gluten-free/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bexocrine+%2Bpancreatic+%2Binsufficiency

 

I am working on a diet of mainly produce while watching fat content and taking digestive enzymes and it's been working pretty well so far.

 

It can be really difficult to keep the spirits up, especially when gluten can cause depression.  I wish you the best.

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I agree that this doesn't sound normal. I had similar issues, feeling like I was chasing my tail trying to pinpoint problem foods. I finally was diagnosed with microscopic colitis, which I'm told is fairly common in celiacs but not in the general population. The treatment is simple - a steroid called Entocort that only acts on the intestines. It's pretty cheap and effective. With the hyperactive guts settled down, I can really tell now when I've had something that doesn't agree with me. I had some cereal with regular milk and one hour later - bam! Before I was going so much I never knew what was a reaction and what was my guts just being nuts.

 

Go see a doctor, because the MC really can mess with your mood and fixing it has really helped mine immensely!

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That was an absolutely fantastic rant, one of the best I've ever seen. You had me right there with you, on edge and emotional, frustrated and angry. Great expression of what you were feeling.

The good news is that your brain is working just fine.

The bad news is that because your brain is working just fine, there probably isn't much we can do to help other than to offer some sympathy. Perhaps it isn't even food, but something else in your medicine cabinet, water, or environment.

I do wish you luck and hope that you can find some answers soon.

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