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What Is Your Worst Symptom When Glutened?


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41 replies to this topic

#31 w8in4dave

 
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Posted 25 June 2013 - 04:52 PM

I have the GI symptoms, as soon as I start getting that familiar pain I better start heading towards the bathroom!! Yes someone said it was embarrassing and believe me it is!! Also fatigue, I cannot tell you how wonderful it is not to be so danged tired all the time!! It isn't all gone yet!! But it is slowly leaving!! Thank goodness!! :) 


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Recovering Gluten Eater 

DX'd June 17th 2013


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#32 Mr. GF in Indiana

 
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Posted 25 June 2013 - 05:47 PM

Pre-diagnosis: All of the worst of almost every physical and psychiatric symptom you can think of, worsening month to month for 60 years, but especially from age 50-60, bone pain from celiac-caused tumor of the parathyroid, and muscle wasting/neuropathy.

Post celiac diagnosis 2010: residual dementia, neurologic damage, which is both disabling and terribly painful. The dozens of other problems, are now almost entirely fixed, controlled, ignored, or surgically repaired, so there's that.


The moral: Where would we be without the invention of the internet? (especially pubmed.com) and all the wonderful posters everywhere who shared their agony, mistakes, and successes without which my journey to this point would have been almost impossible. So thank you.
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Best Wishes!    Gary

 

Misdiagnosed 62 years; finally medically confirmed Celiac/prolamin 2010

No corn, wheat, rye, barley, oatmeal, sorghum; rice is tolerated.  Salicylate sensitive.

Vitamin D and B deficiency, thyroid deficiency, bleeding disorder (all improving slowly).

Neurologically disabled, retired attorney.

 

Only you can take care of you; random advice from someone on the internet does not substitute for your own doctor!


#33 w8in4dave

 
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Posted 25 June 2013 - 07:00 PM

Pre-diagnosis: All of the worst of almost every physical and psychiatric symptom you can think of, worsening month to month for 60 years, but especially from age 50-60, bone pain from celiac-caused tumor of the parathyroid, and muscle wasting/neuropathy.

Post celiac diagnosis 2010: residual dementia, neurologic damage, which is both disabling and terribly painful. The dozens of other problems, are now almost entirely fixed, controlled, ignored, or surgically repaired, so there's that.


The moral: Where would we be without the invention of the internet? (especially pubmed.com) and all the wonderful posters everywhere who shared their agony, mistakes, and successes without which my journey to this point would have been almost impossible. So thank you.

Amen!!! TY I feel the same way!! 


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DX'd June 17th 2013


#34 VeggieGal

 
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Posted 25 June 2013 - 11:06 PM

Mine is brainfog, can't concentrate properly and forget what I'm supposed to be doing and feel unmotivated. My arms ache and feel heavy like the starting of flu and I suffer with fatigue. I'm pretty sure my eyesight is effected too and goes blurry.
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#35 Fire Fairy

 
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Posted 26 June 2013 - 09:16 AM

Migraine, fatigue and a feeling of defeat.


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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#36 w8in4dave

 
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Posted 28 June 2013 - 09:12 PM

I ate 2 cookies yesterday , after the fact (because I am new to this) I was like "Ohhhh Noooo!! I ate cookies!!" I totally forgot about Celiac!! So today!! I had a very embarrassing  moment!! Lucky for me I don't think anyone noticed! I did make it home to shower and do laundry! So NO MORE GLUTINIZED cookies for me!! That was horrid!! That familiar pain hurts!!!! Still feeling the after effects!! 


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Recovering Gluten Eater 

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#37 Fire Fairy

 
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Posted 29 June 2013 - 05:20 AM

I have re-occurring nightmares like that. :wacko: (((hugs))) Now, never do that again.


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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#38 quincy

 
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Posted 29 June 2013 - 02:49 PM

many are complaining of jaw pain and neck muscle aching.  TMJ and jaw pain are closely related to fibromyalgia which has a high incidence in the celiac population.  I have chronic muscle and tendon pain even after going gluten-free for 3 years, though I have to say I eat out alot and I now have to curb my eating out because inevitably I am being glutened alot.....


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#39 Greebo115

 
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Posted 29 June 2013 - 03:21 PM

Brain fog/neurological symptoms are the hardest to cope with.

 

A few hours after glutening I can barely speak. My mind is halted, I can't think, remember ANYTHING or make basic decisions....my coordination goes completely (I walk into door frames, burn/cut myself when prepping food - smacked myself in the face with a door REALLY hard a while ago, resulting in bruised nose and 2 black eyes) and it takes 3 weeks to become clear-minded again.

People try to complete my sentences (incorrectly) when I can't think of a word and I get FURIOUS trying to get my meaning across, or when people (poor hubby) ask me the most basic of questions (E.g. tea or coffee?).

Work comes to a halt (I left my job as a teacher before I knew I needed to be gluten-free) and I'm now self employed so if I don't work, then I don't get paid.

I started to wonder if I was depressed (as the doctors kept suggesting), because I didn't want to go out in case someone talked to me...now I realise it was because I had times when it was it was just so hard to speak!

 

The "C", the "smells", then later "D", I can cope with because my "office" is the bedroom next to the toilet, lol,

 

Edited to add: The severe insomnia also turns my life upside down as I don't sleep at all at first...then sleep 16 plus hours as I begin to recover.


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Obvious symptoms started as a baby with gastroenteritis....
Self - diagnosed celiac at age 41 - Gluten-free since December 2012, shortly after realised in needed to avoid:
Dairy, soy, all grains, all pseudo-grains, nightshades, legumes, MSG, xantham gum, all sugar alcohols.
Low sugar/refined carbs since Aug '08 due to reactive hypoglycemia.

22/03/13 Mung beans and blackeyebeans reintroduced successfully!

26/06/13 Some symptoms mysteriously returned - found loads of CC in my nuts and dried beans!! (verified by food/symptom journal and emails to companies)

26/11/13 After 2 weeks on crutches (again) realised that legumes cause my joints to inflame - it's undeniable....legumes gone!


#40 w8in4dave

 
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Posted 29 June 2013 - 09:51 PM

I was having hallucinations , usually in the wee hrs. of the morning, one morning hubbs came over to give me a kiss before he left for work (I make him) lol anyhoo I said OMG look at the size of that spider!! He looks up and say's "I don't see a spider!" I mean this thing was the size of a crab!! So I said pointing my finger : "OMG you cannot see that? It's huge!! It is right there!!" he looks and say's "nope! I don't see it" I got up grabbed a shoe and at this point the spider was right over my head so I smacked it and as my shoe was about ready to hit the ceiling I noticed it vanish.. Like it disappeared ... SO I said "That was weird" He kinda raised his brows and said "Well I hafta go to work now" I said " how am I supposed to go back to sleep now?" The spider thing happens alot! I know it is hallucinations so I don't let it bother me, i just turn over and go back to sleep. What in the heck would make someone hallucinate like that? Is it Celiac? Or some kind of vitamin deficiency ??


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Recovering Gluten Eater 

DX'd June 17th 2013


#41 klisja

 
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Posted 30 June 2013 - 05:07 AM

I am not sure I am celiac or gluten intolerant but I don't tolerate gluten (but I can eat rolled oats, not quick). I think my problem is that my colon is so damaged from intolerance that there are few things I can tolerate for now. 

 

But eating rye and barley make my colon shake and squeeze (don't now how to describe properly) but fine wheat and spelt make me extreamly tired, I kinda just fall allt the way to the bedroom and my bed grabs me.

 

I don't know how not to have brainfog, lethargy or hyperactivity (getting better) so that's in second place.


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#42 BelleVie

 
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Posted 30 June 2013 - 06:22 AM

I have re-occurring nightmares like that. :wacko: (((hugs))) Now, never do that again.

 Fire Fairy, I just started a gluten challenge a week ago, and have had troubling dreams and nightmares EVERY night since. I haven't had nightmares in years! It's really interesting, because my mother has always struggled with "night terrors." I'm convinced she's celiac and am begging her to get tested! Maybe going gluten free will solve her nightmare problem too! 


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