Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
* * * * * 1 votes

What Is Your Reaction To Gluten?


  • Please log in to reply

48 replies to this topic

#31 beebs

 
beebs

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 691 posts
 

Posted 26 July 2011 - 04:48 PM

If I eat a tiny bit of gluten - I get stomach acid that bubbles up in my throat and I can't swallow, then this kind of mucus thing where it just comes up and won't stop for hours. Its foul - and I have had it in cafes and stuff - so embarrassing.

If I eat lots of gluten (which I will never ever do ever again) I get intersussception. They explain it like the bowel telescopes on itself like it kind of eats a part of itself. It is the most painful and scary thin I have ever been through-I have been in labour and its very similar in pain and it lasts for hours except this can kill you and usually labour doesn't :rolleyes:

But basically if I eat gluten I know it instantly. I don't think I react to anything else whatsoever.
  • 0
HLA DQ8, gluten-free since January 2011

Celiac.com Sponsor:

#32 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 27 July 2011 - 03:01 PM

If I eat lots of gluten (which I will never ever do ever again) I get intersussception. They explain it like the bowel telescopes on itself like it kind of eats a part of itself.



Wow, that's a scary one!

You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal reaction to high levels of gluten. And yet, you are not the first person I've heard have a reaction to gluten that could prove fatal. The level of ignorance about how varied and serious our disease can be is just so dangerous for us - makes me angry on all our behalves.

Okay, sorry - off the soapbox. Just on the brain lately and not a lot I can do about it. ^_^

So sorry you have such a serious reaction, but very glad you found out but lived to tell about it!
  • 2

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#33 beebs

 
beebs

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 691 posts
 

Posted 27 July 2011 - 09:23 PM

Wow, that's a scary one!

You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal reaction to high levels of gluten. And yet, you are not the first person I've heard have a reaction to gluten that could prove fatal. The level of ignorance about how varied and serious our disease can be is just so dangerous for us - makes me angry on all our behalves.

Okay, sorry - off the soapbox. Just on the brain lately and not a lot I can do about it. ^_^

So sorry you have such a serious reaction, but very glad you found out but lived to tell about it!



The worst part is - my GI even though he is the one who knows I get intersussception wants me to do a gluten challenge - he isn't a celiac specialist type person... I'm not going to do it though. I think he wants to do it as a kind of study or something???? My GP is like "Just don't do it - it isn't worth it!"

I haven't been officially diagnosed you see- and my GI believes its imperative, my mother is celiac, my son is borderline (marsh stage 2 changes- gut issues since he was born). I was supposed to have the biopsy and got pregnant so I gave up gluten with plans to do a gluten challenge after the baby came. I had had 3 episodes of intersusseption within a year by that stage. Then about 6 weeks after giving up gluten I went to a to a vietnamese with friends - I didn't want to be the "gluten free" one so I just ordered and shared with everyone. Within half an hour I was throwing up and in agonising pain- its so bad I can't speak through it, I can't stand up I sweaty clammy and pale. I ended up in emergency. So scary.

I ended up in emergency last time I ate gluten...and I am the biggest wheat lover ever - it has taken alot (ie intersussception) to stop eating gluten. I've had that first reaction I mentioned for 12 years and suspected it was gluten for a few years but still wouldn't give it up....
  • 0
HLA DQ8, gluten-free since January 2011

#34 shayre

 
shayre

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 03 August 2011 - 08:42 AM

I am still trying to figure this out too after almost 2 yrs of being gluten free. However, my symptoms are fatigue, brain fog, severe bloating, muscle and joint pain, nerve issues, facial flushing, maybe rashes, headaches, chronic severe constipation. Sometimes I only feel a portion of the list, and other times I get them all. I am guessing that it also depends on how much gluten I am exposed to. Sometimes my symptoms are just too vague and inconsistent, and I really have no idea how to decipher them. I have a hard time figuring out symptoms with cross contamination. However, I do get a build up of gluten symptoms over time. Each day I feel worse and worse, until I can't function. That happened with Rice Dream milk, oatmeal and gluten free granola mix. I also get confused with other food sensitivities. I have not been officially diagnosed either, but I have the more severe symtoms of celiac disease (thyroid disease, infertility, possible DH skin rashes and other autoimmune diseases that were/are trying to emerge)... so I will just have to live my life assuming that I've got it.
  • 0

#35 beebs

 
beebs

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 691 posts
 

Posted 03 August 2011 - 04:19 PM

and other autoimmune diseases that were/are trying to emerge)... so I will just have to live my life assuming that I've got it.


yeah same - just waiting on my connective tissue disease results to see if they actually show up anything this time :rolleyes: ...this autoimmune stuff is sooo horrid - I hate it
  • 0
HLA DQ8, gluten-free since January 2011

#36 beebs

 
beebs

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 691 posts
 

Posted 04 August 2011 - 11:26 PM

Wow, that's a scary one!

You know, it's things like this - the really bad reactions to gluten that are strange and unusual but potentially deadly - that make the idea of a gluten challenge to get diagnosed such a hot button for me. Potential celiacs are never told that one of the risks of a gluten challenge is that they could literally have a fatal reaction to high levels of gluten. And yet, you are not the first person I've heard have a reaction to gluten that could prove fatal. The level of ignorance about how varied and serious our disease can be is just so dangerous for us - makes me angry on all our behalves.

Okay, sorry - off the soapbox. Just on the brain lately and not a lot I can do about it. ^_^

So sorry you have such a serious reaction, but very glad you found out but lived to tell about it!


Have you heard of others? I haven't but I know they are out there because there have been studies done...It makes it scary to be honest. I am going out to dinner tonight and I am starting to feel nervous about it already....the whole accidental glutening thing..ugh!
  • 0
HLA DQ8, gluten-free since January 2011

#37 oceangirl

 
oceangirl

    oceangirl

  • Advanced Members
  • PipPipPipPipPipPip
  • 926 posts
 

Posted 05 August 2011 - 06:15 AM

Hello.
I'm late to this but thought I'd throw in my two cents. I react very similarly to MargoS.; I am afraid of gluten.

I've been gluten free since 2005, am extremely sensitive (found out the hard way) and NOTHING does what gluten does to me so... if I hear hoofbeats.....

Symptoms:
severe left side abdominal pain, gas and bloating, very distended abdomen-hard as a rock. Alternating D and C, then stools similar to Margo S for days, mouth sores, joint pain and cracking, feeling like it's hard to breathe because of stomach pushing up on diaphragm, I think. Pain often worse at night and always have "gluten nightmares". Followed by fear of eating anything! Whole thing often can last a week. Not fun.

Good health to all,
lisa
  • 0

#38 Austin Guy

 
Austin Guy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 128 posts
 

Posted 11 August 2011 - 01:56 PM

D within 30 minutes
Gut rumbles and more D throughout the day
Abdominal bloating
Urine is almost fluorescent from malabsorption of vitamins
Much more hungry
Sadness and anger
Depression
Avoid people altogether - social anxiety
Super tired and lack of strength
No motivation to do anything at all
Inability to concentrate
Dry hands and nose - flaky skin that lotion will not cure
Acne on chin and shoulders
Cold sores on tongue
Balance problems
Racing heart at times. When slower it skips beats.
Vision not as good as when feel well
  • 0

Self-diagnosed gluten intolerant May 10, 2011 after going gluten free May 8.
Allergic to cat dander, salmon, nuts, lots of airborne pollens and mold.
Soy intolerance August 2011
Dairy and egg intolerance November 2011
Peanuts 2013
Titanium dioxide June, 2014

Bisphenol-A August, 2014.


#39 rchase

 
rchase

    New Community Member

  • Members
  • Pip
  • 3 posts
 

Posted 11 August 2011 - 06:10 PM

Scintilating Scotoma (Eye Blindness / Photophobia)
Phonophobia (Sound aversion / Irritation.)
Moodiness
Severe Allergies
Athsma
Memory Loss
Irrational Thinking(Poor Judgment)
Nerve pain / Neuralgia
Sinus Pressure
Toothpain
Weight Gain
Chronic Fatigue
Premature Ventricular Contraction
Tachycardia
High Blood PRessure
Strangely, I didn't notice the abdominal swelling or any IBS much, other symptoms were kind of distracting.
  • 0

#40 jumpingjuniper

 
jumpingjuniper

    New Community Member

  • Advanced Members
  • Pip
  • 19 posts
 

Posted 03 December 2011 - 02:10 PM

You know, we've got a symptom now that I never realized WAS a symptom, but now I'm finding more people who have this as well: hyper-sensitive senses. Anyone else get this?



I absolutely have this response. It's not an early response for me, at least not that I've noticed, but it's definitely one that arrives with chronic exposure. I was undiagnosed for many years and was always extremely sensitive to those things, especially textures and itchy or tight-fitting clothing. After ten years gluten-free, I'm dealing with a major re-occurrence (long story involving cross-contamination and moving overseas), and I'm definitely very sensitive to stimulation again. I'm only wearing about 2% of my wardrobe because the rest of it makes me so flustered.
  • 0

#41 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 21 December 2011 - 12:16 PM

I'm on gluten right now in preparation for testing and the super sensitivity to sound is a huge factor for me. Water running, vehicular traffic, voices over the telephone, floor boards creaking...all of them and more make me cringe.

In addition I have vertigo, balance problems and total exhaustion. If I am under flourescent lights, this seems to trigger seizure like episodes where my head starts bobbing uncontrollably.

I have gas and the rumblies but only seem to have the gut wrenching pains when I eat pizza. I do not know why it's just pizza that seems to bring on the pains.
  • 0

#42 sa1937

 
sa1937

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,657 posts
 

Posted 21 December 2011 - 03:40 PM

I have gas and the rumblies but only seem to have the gut wrenching pains when I eat pizza. I do not know why it's just pizza that seems to bring on the pains.

Are you intolerant of dairy, by any chance? A lot of us have to give it up at least temporarily. I craved cheese so badly and was happy when I was able to add it back...and my kind of pizza has lots of cheese. :P
  • 0
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#43 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 21 December 2011 - 04:39 PM

Are you intolerant of dairy, by any chance? A lot of us have to give it up at least temporarily. I craved cheese so badly and was happy when I was able to add it back...and my kind of pizza has lots of cheese. :P


That is a possibility that I never considered to tell you the truth. I love cheese too but had cut it out of my eating habits in the past year because whenever I would eat it, my ankles, hands and face would puff up from water retention the next day. I was assuming it was the salt though and have tried to eliminate most of salt/processed foods from my diet.

I'm glad you were able to re-introduce it back in your diet. Cheese is heaven. The funny thing is one of my most favourite meals in the past was a thick slice of hard cheese on homemade bread. Funny how life works out. :)
  • 0

#44 sa1937

 
sa1937

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,657 posts
 

Posted 21 December 2011 - 04:45 PM

I hope you are able to add it back in, too. Giving up cheese was much worse than giving up gluten. Last Jan. at 9-months gluten-free, I started to eat a tiny bit of hard cheeses (cheddar or parmesan) but I like lots of mozzarella on my pizza. :P

ETA: I did buy Lactaid milk right away although I really don't use much milk.

Edited by sa1937, 21 December 2011 - 04:47 PM.

  • 0
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#45 Kamma

 
Kamma

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 214 posts
 

Posted 21 December 2011 - 05:02 PM

That must have been a heaven sent moment, biting into the Cheddar. :)

I kind of stopped drinking milk when I had my kids (save the milk for the kids!) and totally fell out of the habit of drinking it even after they grew up and moved away. Cheese was my only dairy source.

I'm assuming the stomach can't handle the proteins in dairy because of the damage from gluten?
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: