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notkuroda

Member Since 15 Dec 2009
Offline Last Active Jun 05 2013 11:46 AM
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#853925 Healing - Running Out Of Patience.

Posted by notkuroda on 14 February 2013 - 01:02 PM

Sorry to hear you're still having trouble MO. My wife is still having lots of problems as well. Today she saw a nurse practitioner that she really likes, and got a written perscription to work from home for the next four weeks. We're hoping this is the start of something good, attempts to work while healing have not been going well.
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#848405 Help Needed Please Re: Glutening

Posted by notkuroda on 14 January 2013 - 04:59 AM

I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.


the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:
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#847966 Theraflu Powder Has Gluten

Posted by notkuroda on 11 January 2013 - 07:44 AM

Some people are more sensitive than that. I live by the rule that no amount of gluten is ever safe. I will not knowingly ingest gluten, on purpose, no matter how small the amount. I have gotten extremely sick from "gluten free" products that are below 20 ppm in the past so clearly I am someone who can not live by that proposed standard. It isn't simply because I got sick though, it made me rethink the whole philosophy of it. Because of how potentially dangerous it is to us, no amount of gluten is ever okay, period. Why the hell should we knowingly risk a product with gluten when we are already sick when there are perfectly good products on the market that are gluten free?


this makes me furious. I believe the standard in Ireland, where Celiac is RAMPANT, is 2 ppm. What the FDA is proposing is really not acceptable
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#847816 Contamination=No Energy

Posted by notkuroda on 10 January 2013 - 11:01 AM

Hi everyone, writing on behalf of my wife again, who doesn't have time to visit this forum. Before I start, I've found a lot of very helpful info and support on this forum, thank you to everyone who contributes.

My wife was diagnosed a few years ago. She has DH from Celiac. She's also hypothyroid. ONce she starts getting the rash, it's a red flag, she's been contaminated. So we are keeping a diary, she is eating nothing but the bare basics(fruit, veggies, yogurt mostly). She's been flaring up for about 4 days now, we still haven't figured out what's getting her.

My specific question is this: Do you experience a complete absence of energy when contaminated? We figure she's not getting any nutrients from food, and possibly not absorbing her thyroid medication. She used to take adderall, but has recently found it's next to impossible to find adderall that she knows is gluten free. She's really having a tough time, can't keep her eyes open at work.

Has anyone else experienced this? Are we assuming the right reason that she's so tired? And is there ANYTHING that can be done? She cant even drink coffee because it makes her joints ache. Really at a loss here and would appreciate any thoughts you have.

For all of you with this disease, I feel for you. Experiencing this with her has been a nightmare.
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