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Kikikobe

Member Since 14 Feb 2013
Offline Last Active Feb 22 2013 08:50 AM
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Topics I've Started

Could Use Some Encouragement

14 February 2013 - 02:33 AM

Hello everyone,

I confess that I'm nearly at wit's end. I've been sick for near two years now and everytime I research my problems, it seems I come back to gluten issues. A while back, I was tested for gluten sensitivity and was told it came back fine. I ( at the time ) trusted my dr and decided it was something else. Boy do I feel dumb after reading about the tests here on this forum.

Anyway, I feel like I should lose the gluten and I have to be honest, it sounds really hard! It's not that I have to have bread and whatnot, it's that I'm so ill most evenings, it's often hard for me to cook. I also deal with a good deal of brain fog that hinders my menu making abilities and that's when I'm just doing whole foods. I know it sounds lazy/obtuse because that only way I might get better is to just handle it. It's just that I'm so drained from fighting this for so long and with the possibility that tests will not be accurate... it kinda makes me want to cry. Will this just be another dead end? I guess that's my fear. I'll expend energy on something that has nothing to do with my symptoms. Logically, I get that things must be ruled out and that's what I try to focus on. Still, I'd like a gentle nudge so that I feel like I'm not the only one who thinks I might have Celiac disease. I'd like to share my troubles below if you are willing to give me your two cents. And yes, I do understand that none of you are Drs but I also realize that many of you may know more about Celiac than my own Dr.

I am drop dead tired most of the time, especially late afternoon and evenings.
I have off and on insomnia
I have what seems like eczema
I also itch where there is no rash. Especially, and oddly, my pinky teo. Drives me up a wall. Seems to act up when my feet get warm ( bath, socks, bed ).
I have IBS like symptoms that change nearly every day.
I don't really feel nausea but I often just have "yucky tummy". I hope you understand what I mean there... lol
I feel like food sits in my stomach far longer than it should.
I have mind fog/ feel slightly drunkish.
I used to love wine, now hate it. It just makes the tired/brain fog worse.
Low libido. Scratch that. NO libido. Having had a very healthy one before. I think this is the symptom my hubby most hates.
Aching joints on occasion. This will be one joint at a time. It will be gone or moved to another a day or two later.
Dry tongue, no matter how much water I drink. It -feels- dry even with a mouth full of water.
I was anemis a few years ago and then I had very low ferritin ( iron stores ). This is much improved.
Low Vit D
Low end of the labs normal Vit B
Heart burn
Rapid pulse (over 100)
And worst of all and this one is really hard to explain without sounding crazy. On occasion, I feel so tired, weak and out of it, I feel like I'm leaving my body. It's scary and makes me feel panic, or used to until I kinda got used to it. When I told my Dr, she decided I was depressed. I told her, "Of course I am! I'm sick everyday and can't be the mom/wife/person I used to be! Wouldn't you be sad too?" Ugh!
I used to have swollen glands( armpit and weirdly under my chin ), low fevers and thinning hair but those seemed to have cleared up as ferritin got better.

I think that's about it. I should also add that sometimes I'm blessed with a day where I feel well enough to wonder if I had just imagined all these symptoms. I sit there and think, "Wow. I feel totally normal. maybe I'm fine." It's not often but it happens and until recently, I used to think I was magically cured.

I think this post is more than long enough and if you made it this far, I'm impressed! If you agree with me and think more testing for celiac is called for, or even a gluten free trial, please let me know. Also, if you have any other ideas, I am open to reading those, as well.

Thank you for taking time to read this. It is greatly appreciated. :)