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What Is Your Worst Symptom When Glutened?


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41 replies to this topic

#1 Googles

 
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Posted 21 December 2011 - 11:08 AM

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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#2 Poppi

 
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Posted 21 December 2011 - 11:13 AM

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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Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.


#3 lynnelise

 
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Posted 21 December 2011 - 11:30 AM

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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#4 Dana Ward

 
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Posted 21 December 2011 - 11:51 AM

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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Dana Ward

#5 Kansas

 
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Posted 21 December 2011 - 12:31 PM

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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#6 Jenny (AZ via TX)

 
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Posted 21 December 2011 - 01:28 PM

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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Jenny
(Texas girl in AZ)

Diag: 2/2008
Bloodwork - positive, 2/19/08
Biopsy - positive, 2/26/08
Colonoscopy - clean as a whistle!, 2/27/08

#7 Skylark

 
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Posted 21 December 2011 - 02:20 PM

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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#8 Celtic Queen

 
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Posted 21 December 2011 - 02:32 PM

[quote][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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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#9 navigator

 
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Posted 22 December 2011 - 02:23 AM

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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#10 beebs

 
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Posted 22 December 2011 - 03:27 AM

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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HLA DQ8, gluten-free since January 2011

#11 dilettantesteph

 
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Posted 22 December 2011 - 04:04 AM

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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#12 TeknoLen

 
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Posted 22 December 2011 - 05:45 AM

Someone described previously said it best, "twisting guts". That can be quite uncomfortable...
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  • self-dx gluten-sensitive 2007 but did not take it seriously
  • dx autoimmune Graves hyperthyroidism 9-7-11
  • second opinion doctor confirmed autoimmune hyperthyroid dx, suggested possible autoimmune thyroid-gluten sensitivity connection
  • medication-induced hyperthyroid remission 11-4-11
  • lab test dx gluten, casein, ovalbumin, and soy sensitive 12-15-11
  • taking diet seriously now, strict GFCFSF diet...

#13 bartfull

 
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Posted 22 December 2011 - 09:51 AM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 Kate79

 
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Posted 22 December 2011 - 11:38 AM

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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#15 Chad Sines

 
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Posted 22 December 2011 - 12:13 PM

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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