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Crazy Celiac Here!

sweetp

By sweetp
in Coping with Celiac Disease

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sweetp Rookie
sweetp
Posted

so, is it just me, or does anyone else feel like they are the ONLY person in the entire universe that has celiac disease!?? I mean...yah... you all have it (lol) but i mean like in "the real world" the people you meet in everyday life... (sigh)..... no one gets it... yesterday, this girl at my church ( trying so hard to be sweet!!)) said "i made some bread that you can have... it's called oat maple bread and it doesnt have WHOLE wheat flour..." i said.. wow, yah, thanks! :) um... i can't really have oats and i can't have any flour... she used bleached flour and thought it was okay.... :( anyways... so sometimes when i'm home alone, or even when i'm at a church potluck, but mostly when i'm home alone... i just want to tear into a loaf of great harvest honey whole wheat bread, ( i don't know why i buy it for my hubby-i torture myself!!!) anyways... i want to chuck the stupid "rice LOAF" that's so dense-and-hard-it-could-seriously-injure-someone-if-you-used-it-as-a-weapon, out the window and dump the soggy quinoa spiral noodles in the toilet where they belong and eat some good old top ramen! ai yai yai... i feel crazy sometimes, like this disease is not real and that if i believe that hard enough that i can go back to eating like a "normal person" i mean, i've been SOOOO stinkin good for SOOO long, it's been a while since i've had a bad reaction, and a few years since i've been constantly sick...i feel so healthy now!! :) i think i almost need to be glutened once in a while so i don't feel so deprived....anyhoo...so here i am home alone....barry left some cookies on the counter....RarrrRrr..

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VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Sweetp,

try Kinnikinnick bread (www.kinnikinnick.com) for online ordering and Tinkyada noodles (taste like regular noodles)

hez Enthusiast
hez
Posted

I think all of us feel at times as if no one else has this disease. That is why we come here, there is comfort in numbers :)

sweetp-You need do dump the quinoa noodles. IMHO they are just nasty. Try tinkyada (I know I mispelled that) it tastes like real pasta and does not fall apart. I can not stand the rice loaf bread. I enjoy the Whole Foods bread toasted, I like Anna's bread from gluten evolution, and I tried Pamela's in my bread maker and that was good.

Sorry Barry left the cookies on the counter :( Make sure you have goodies for yourself for times like these.

Hez

Rachel--24 Collaborator
Rachel--24
Posted

I'm with everyone else on the Tinkyada.....get rid of the quinoa stuff...Tinkyada tatses like real pasta. Your hubby would probably like it too.

sparkles Contributor
sparkles
Posted

Sorry to hear that you are going crazy...but glad to hear that I am not alone. It does get to be overwhelming sometimes...and depressing....and I must admit, I am tired of explaining for the zillionith time this darn diet and why I can't just cheat "a little". Right now the whole celiac thing is really getting to me... I am supposed to go to a banquet on Sunday night and am dreading it because it will be typical banquet food.... and then there will be all the questions from those around me as to why I can't eat this or that and why would just a little hurt....etc..... I need a constructive outlet for these frustrations.... I wish I could run away!

Soo B Newbie
Soo B
Posted

The first celiac conference I went to, the thing I was most excited about wasn't the educational value -- I was excited to physically see other people (outside immediate family) with celiac disease. There was something SO comforting about being in a room full of human beings who go through the same things as me every day. I just wanted to hug everybody.

Guest nini
Guest nini
Posted

is there a local support group in your area? I find that is one of the most helpful things for me is to get together with local Celiacs and enjoy each others company and good food!

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kabowman Explorer
kabowman
Posted

I know - I am the only one, oh wait, my dental hygentist and her daughter have food issues but I see her once every 6 months and my mouth is full of her hands so I can't really chat back, but other than that, people just don't get it and there is only me.

I love this MB and would have issues without it.

loraleena Contributor
loraleena
Posted

I hear you. You should buy and make Manna from Anna bread. It is on the web. It is crusty chewy and yummy like a real loaf!!

Green12 Enthusiast
Green12
Posted

I don't know about anybody else, but I feel now that I am aware of celiac and after a year and a half or so of eating a gluten-free diet it seems like more and more people I know are having digestive difficulties and exhibit signs and symptoms of celiac. Maybe it's just me though.

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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