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What Is Your Worst Symptom When Glutened?

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Interesting about the TMJ. It was one of the first things they ruled out though in my case. I have an egg sized, hard as a rock lump on my jawbone, about halfway between my chin and the hinge of my jaw. It never goes away, but from time to time that whole side of my face swells like a chipmunk, I can't open my mouth wide enough to even get the baby toothbrush I bought inside, and I have a constant throbbing pain, like a bad toothache, interspersed with severe stabbing pain in my jaw and my ear.

It has been acting up again lately. I finally got a prescription for Tylenol,made without gluten, corn, or salicylates. That makes things so much easier. For a while there I was relying on warm compresses for the pain, and frankly they didn't help at all. At least the Tylenol knocks it back a little.


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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Interesting about the TMJ. It was one of the first things they ruled out though in my case. I have an egg sized, hard as a rock lump on my jawbone, about halfway between my chin and the hinge of my jaw. It never goes away, but from time to time that whole side of my face swells like a chipmunk, I can't open my mouth wide enough to even get the baby toothbrush I bought inside, and I have a constant throbbing pain, like a bad toothache, interspersed with severe stabbing pain in my jaw and my ear.

It has been acting up again lately. I finally got a prescription for Tylenol,made without gluten, corn, or salicylates. That makes things so much easier. For a while there I was relying on warm compresses for the pain, and frankly they didn't help at all. At least the Tylenol knocks it back a little.

OMG! you sound like me--right down to the referred pain in my ear! It hurts like heck.

I have those hard knots and swelling--and yes, they can be the size of an egg. These are called trigger points. (not to be confused with tender points of fibromyalgia) They are hyper-irritable knots in taut muscle bands and they can cause pain locally or refer to other places, in this case, the ear or the temple. They can prevent you from opening your mouth and cause tooth pain, when there is no tooth problem.

Oh hon, I have this pain. If you have been Xrayed and there is nothing showing like arthritis in the jaw, it could be muscular. It MIMICS TMJ dysfunction. I can tell you more if you want as I have had a significant reduction in pain from massage and exercises. I was in agony from this for 2 years and no doctor could help me.

I read about trigger points and how they are perpetuated by things like vitamin deficiencies and food intolerances and that's how I knew why I had so much darn pain in my body.

You may wish to read about trigger points, myofascial pain and TMJ pain. See if you can find a massage therapist to help you out. I wish you well. I really do know how much this hurts!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I just recently found out that I have celiac disease.. my symptoms are broad I tend to eat more at night and this causes insomnia and projectile vomiting along with extream anxiety and depression.. I'm imbarrassed.. I know its nothing I can help but I hate being a pain for others to deal with.. after the initial explosion I get the gluten head as I have heard others talk about and stomach cramps that make me in pain and ill for hours.. I have a job that requires me to be on the ball and I have been noticing that I will randomly hit a wall and everything becomes much more difficult. Which is hard for me.. I don't seem to get a break and I often hear that this really is not that bad and I should not make it more than it is. I honestly don't feel like I am... does anyone have

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I haven't been diagnosed with Celiac disease but I have been avoiding gluten for 2.5 months now. My worst symptom when glutened is extreme exhaustion about 10 minutes after I eat the offending food. 

 

It is so interesting that you mention that TMJ is associated with Celiac Disease. I have TMJ and have to wear a splint at night. I have been bad for the past 6 months and haven't been wearing my splint and I know that I have been clenching my jaw at night because I have had some dreams where I was biting into something and I got lock-jaw and couldn't open my mouth in my dreams. Now the past two months I have not only jaw pain but pain into my ear canals and the rest of my head feels like it has a blood pressure sleeve around it 24/7 squeezing my brain. Do any of you also have these same symptoms? I think I need to make a point of wearing my splint again so I can make these headaches go away. 

 

It's great to talk to others with similar symptoms. I feel that I am not alone in this. :)

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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!! :) 


Recovering Gluten Eater 

DX'd June 17th 2013

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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.


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!

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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!! 


Recovering Gluten Eater 

DX'd June 17th 2013

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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.


Celiac.com - Celiac Disease Board Moderator

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Migraine, fatigue and a feeling of defeat.


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

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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!! 


Recovering Gluten Eater 

DX'd June 17th 2013

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


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

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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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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.


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!

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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 ??


Recovering Gluten Eater 

DX'd June 17th 2013

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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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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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