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      Frequently Asked Questions About Celiac Disease   09/30/2015

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What Is Your Worst Symptom When Glutened?
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42 posts in this topic

I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?

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For me it's the burning pain in my back.

The emotional stuff passes pretty quickly for me and even the fatigue and nausea is gone in a week but the horrible burning pain in my back and neck can last for months. And nothing helps.

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For me it's GI symptoms that bother me most. Once they hit I have a very small window of time to find a bathroom. It's miserable and embarrassing. Also I have chronic mono and it seems to cause a major flare up of that if I'm glutened. I never feel good but I do have some good days...a glutening leads to about a week or two of bad days!

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For me it's GI symptoms that bother me most. Once they hit I have a very small window of time to find a bathroom. It's miserable and embarrassing. Also I have chronic mono and it seems to cause a major flare up of that if I'm glutened. I never feel good but I do have some good days...a glutening leads to about a week or two of bad days!

Same for me. I know for sure when my stomach starts to twist.

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The neuro symptoms I experience are the worst with the GI running a close second, Then knowing it will take a month to 6 weeks before I feel super again really hits hard, because every time I have been glutened is when I decide I can try something labeled gluten free. I have now decided that the only things I eat will be certified gluten free and whole foods. I also have dairy and soy issues, so the whole foods works for me and I feel really good.

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I would have to say it is a migraine with "D". It usually hits me about 8 hours after. However, I can only assume it's gluten. I'm just never sure if that's what it really is. However, it usually is when I eat out (even though they have told me it's gluten-free - I suspect cc).

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I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?

Me too, me too! I can handle the GI stuff no problem but the depression/anxiety is truly awful.

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[Googles, on 21 December 2011 - 01:08 PM, said:

I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?

Me too, me too! I can handle the GI stuff no problem but the depression/anxiety is truly awful.

/quote]

Me too on the depression. I get so apathetic and I hate feeling that way. The brain fog is a bad one for me too.

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The overwhelming fatigue and joint aches. I glutened myself with spices on Thursday night. I started to feel an improvement yesterday and thought that I was getting over it but today I'm worse than ever. :(

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Intussusception is by far the worst for me. Last time I started with violently projectile vomiting everything and then bile where I can't get a breath in and then the agonising pain started (very much up there with labour), I ended up in emergency and felt as if I was going to die it lasted about 3 hours from start to finish. Then of course all the other symptoms like GERD and C last for weeks and weeks after :blink:

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The depression is terrible, but so is not making it to the toilet in time. I don't know which is worst.

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Someone described previously said it best, "twisting guts". That can be quite uncomfortable...

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I'm still not sure if this undiagnosed jaw pain is strictly gluten/corn related or not, so even though that is my worst health problem, I don't think I can name that.

So I'd have to say the insomnia and all of the fatigue, low energy, and emotional fragility it brings.

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Migraines with nausea are by far the worst, with emotional symptoms and fatigue second. I do get some GI symptoms, but those have been manageable so far.

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GI. I am always fatigued, but nausea is one of those things that really impairs a person. That low-grade come and go is a killer.

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Definitely the Neuro symptoms :rolleyes: ---what I call "Gluten Head" --you know, the 7 dwarves: spacey, dopey, racy, anxious, depressed, agitated, and clumsy.

The increased joint and nerve pain comes in second--ooh, that's just great. <_<

The GI stuff --nausea, burning, churning, and the rest?---is just the joyful icing on the cake. :blink:

Lasts about 2 weeks.

Gluten is a bugger.

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I'm still not sure if this undiagnosed jaw pain is strictly gluten/corn related or not, so even though that is my worst health problem, I don't think I can name that.

So I'd have to say the insomnia and all of the fatigue, low energy, and emotional fragility it brings.

I get jaw pain when the GERD is really bad, So for me Jaw pain is very much related to eating gluten:)

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I get jaw pain when the GERD is really bad, So for me Jaw pain is very much related to eating gluten:)

Me too!

My jaw and face and neck muscles--all ache from gluten. Anxiety is provoked by gluten and we clench our jaw muscles. Inflammation from gluten will hit any joint or muscle group.

I am working on an article on this very topic for the TMJD specialist and the MT who works on his patients.

Guess what's the one factor we all share? Gluten intolerance.

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Within 6 hrs of Gluten ingestion I get

projectile vomiting

followed by at least 24hrs of diarrhoea and chronic fatigue (depending on how bad the glutening was).

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Someone described previously said it best, "twisting guts". That can be quite uncomfortable...

This is what I have as well. It's so painful, I'm in a fetal position for hours. I don't run to the bathroom, just have the twisting terrible pain!!

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I'm still not sure if this undiagnosed jaw pain is strictly gluten/corn related or not, so even though that is my worst health problem, I don't think I can name that.

So I'd have to say the insomnia and all of the fatigue, low energy, and emotional fragility it brings.

For decades my jaw pain was diagnosed as a result of my heart murmur- i now believe it's coeiac disease. I was first aware as of it as a teenager. I'm 54 and diagnosed this year.

Huge improvement in heart palpitatiions.

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Me too!

My jaw and face and neck muscles--all ache from gluten. Anxiety is provoked by gluten and we clench our jaw muscles. Inflammation from gluten will hit any joint or muscle group.

I am working on an article on this very topic for the TMJ specialist and the MT who works on his patients.

Guess what's the one factor we all share? Gluten intolerance.

What is a TMJ and MT?? Sorry - still catching up on the jargon!

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The twisting gut IS very accurate! My first symptom though is a feeling of being completely stuffed full of food. It usually happens after just a few bites and within 15 minutes of consumption, followed by rapidly repeating burping for several minutes. Does anyone else experience this? I will tell you that that initial discomfort (at least for me and my 3 daughters who all have celiac as well) is eased by a little bit of wine. Not sure what the wine actually does but suspect that it might just 'relax' things a little. The wine does nothing for the symptoms that follow that initial response and usually go on for a few days but it at least helps a little.

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projectile vomiting

My son gets that. I'd have to agree that's the worst. With not making it to the toilet, at least you could wear diapers and do what you have to do. It's hard to attach a sac to your face.

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