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Keep Punching, Joe.

rdunbar

By rdunbar
in Coping with Celiac Disease

Recommended Posts

rdunbar Explorer
rdunbar
Posted

Hi, everyone.

I haven't been around here at all lately, and i will explain why.

even though everyone on the Forums here have helped me so immensely, i can't even express my gratitude enough,

I really needed a break.

It was like it was becoming literally a matter of survival for me over the last 6 months, learning how to cope with what i learned is full blown celiac/ dermatitas herpitiformis, with heaps of symptoms.

I felt like I had absorbed enough here, with everyones help, to try to bear down, and settle into this new lifestyle for the time being.

the thing was, that while coming here everyday was great, and rewarding,

I was constantly viewing everything from a sick persons perspective, and feeling increasingly loomed over by my condition.

every interaction i had, had to revolve around celiac, and it was getting overwhelming.

I've always been a negative person (starting to figure out why), and i was starting to worry that i could'nt afford to slip into feeling negatively about

myself, and always seeing myself as this sick person, and wearing it as an identity.

I'm not blaming anyone but myself, but my obsessiveness about learning about celiac, and dealing with it, i was starting to view as an actual threat to my survival.

sounds crazy?

I was doing catering over a year ago, when i learned that it was suicide for me to even be around gluten,

and quit.

As I went totally gluten-free, as in no eating out/ risk of CC, no dairy, no grains, I started to feel even sicker for quite a while,

and went through @ a 6 week period of being borderline bed ridden from exhaustion.

I would'nt have been able to work, even if i had a job.

I've been starting out in a new career now, because i have to, so just wanted to have a new phase, and keep my chin up as much as i can.

hope this makes sense.

have any of you experienced ppl gone through this kind of thing??

One thing I've noticed, is that i have been becoming more able to tell if i get slightly glutened, theres an ache in my hip, and my dermatitas herpetiformis flares up; i get testy, and snappy.

or if i get glutened, it's much more extreme.

I was going to post this in the DH forum, but one huge thing, that i've been struggling with is the DH on my scalp.

about 3 months ago, it was nearly gone, and i was so psyched. I have photos i take w/ my phone, and it was about 10% of what it had been, and it wasn't the stinging pain from hell.

I really thought i was in the home stretch this time, for real, after giving up hope so many times.

and then, somehow, it comes back with a vengence,

and i'm not doing anything that i was'nt before?

I order my soap/ bodycare products from gluten-free savonnerie,

I don't use anything w/ iodine, supplements, seafood, non-kosher salt,

I don't eat any processed or packaged foods at all.

only meat, and vegetables, preferably ones with skins (sweet potatoes, acorn squash, carrots) so i can feel safe no gluten has snuck inside. LOL.

I've even limited fruit to a pear, or apple in a salad, so the fructose impact is'nt too much.

I used to be a super fruit junky.

I'm really doing everything i can think of, besides wearing gloves when i go out in public, or handle cash.

and now, i'm starting to think i should do that , because i just can't think of anything else.

Dr. Peter Green pointed out in his book that DH will just flare up unpredictably, and that it can take years to finally go away.

I hope that this is why i'm still struggling,

but honestly, i feel like Joe Frasier sometimes,

like i'm fighting a fight that i can't win.

I feel so much better, and am doing better in so many ways, thanks to being gluten-free, so i know I should'nt complain.

But the nightmare of the DH makes me forget about all the other problems that i had, that are 90% + better now sometimes.

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mommida Enthusiast
mommida
Posted

We all to take it "one day at a time".

At least Joe Frasier (assuming he would get frustrated too) got to punch people. I tell you, having to watch your kids go through this Celiac and other health issues too and how unfairly they are treated, I just want to punch people.

So my advice, treat yourself well! Don't rely on anyone else to bring you joy, go out and find it yourself. It can be as simple as playing your favorite song on your ipod.

Takala Enthusiast
Takala
Posted

Hang in there.

I know it's frustrating.

If you have short hair, maybe you can try just rinsing it everyday, or rinsing it with a bit of baking soda in water, then rinsing it again with a bit of pure apple cider vinegar in water (1 part vin to 7 parts water) for the final rinse.

But I bet you've just picked up a secondary intolerance from something in your environment you haven't figured out yet. Or maybe you don't need to figure anything out, and this is going to go away, anyway.

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