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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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.

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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!

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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!! :) 

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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.

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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!! 

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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.

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Migraine, fatigue and a feeling of defeat.

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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!! 

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

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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.

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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 ??

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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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    • Can you tell me if my symptoms can be caused by gluten intolerance? burning sensation in mouth (gums, lips) quickly rising blood sugar after eating gluten, then high heart rate I only eat gluten once a day. Later in the day, blood sugar won’t rise as much, but also goes down too much, despite eating a good combination of protein, carbs, veggies. No matter if I eat less or more. burning esophagus burning stomach stool that passes so quickly that I have bad cramps for a while afterwards and feel nauseous often joint pain itching burning skin constipation ringing in my ears nightmares  stiff muscles, especially in my arms anxiety after eatng gluten temper tantrum after eating gluten (crying, anger, anxiety, ocd thoughts) hunger after eating gluten; sometims for hours, even at night shortness of breath/air hunger/not being able to breathe in deeply yawning I am feeling so desperate. I had blood tests and biopsy and it showed no celiac disease. I do have symptoms of itching, burning mouth, high heart beat, nausea shortly after eating gluten, so I know I am sensitive. I tried to stop gluten and then got such bad hypoglycemia, that I did not know how to continue. So I tapered slowly. But in the meantime, not really getting better. The hypoglycemia is now worse and seems to have to do with my hormonal cycle, which is also messed up. Tryng to stop gluten actually worsened pre-existing mild hypoglycemia. Also when teying to stop, I felt very dizzy, as if my blood sugar was too low all the time (couldn’t measure, no meter back then). I got very anxious, a lot of itching, my menstrual cycle got messed up, pain in my calves and cramps in my feet. When I cut out a small bit, I had it milder. Especially the dizzyness, brain fog and not being able to think clear got better. Can I expect the hypoglycemia to get better?  I am so fed up with feeling sick all the time. But I am afraid too, what will hapoen when I stop, as I know the last time I tried was bad.  Thanks in advance for taking the time to answer my questions. Kirsty
    • You can be safe with just a general multivitamin.  Look for one that is gluten free.  Read our Newie 101 thread located under the “Coping” section of the forum for tips.  Browse through Celiac.com for more ideas.   Food is till the best source for vitamins and minerals, but sometime supplementation is needed.  I do not take any (took iron when I was first diagnosed since my anemia was severe), however, I make sure I eat a varied gluten-free diet and I try to avoid processed junk food.   You might look into avoiding nightshades for a while (white potatoes, tomatoes) to see if that helps with joint pain.  Besides celiac disease being ruled out (please make sure you had more than the TTG IgA and IgA deficiency test because not all celiacs test positive to the TTG like me), did they check for R. Arthritis?   I am sure others will contribute more soon.   Welcome to the forum!  
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