Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Accidentally Glutened

coco676

By coco676
in Coping with Celiac Disease

Recommended Posts

coco676 Newbie
coco676
Posted

Hi everyone,

I've been on a gluten free for over a year now and for the most part am doing fine...except on the rare occasion when I accidentally gluten myself.

Does anyone else get a severly itchy scalp after ingesting gluten? It is so hard for me to sleep during one of these episodes because all I want to do is brush/scratch my hair. I also feel like my sleep when I'm glutened is similar to how one sleeps when really, really drunk (passed out, weird dreams, don't feel rested, really thirsty when woken up).

Does anyone have advice for how to deal with this better? I just try to drink tons of water and pop a Zyrtec.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sisterlynr Explorer
sisterlynr
Posted

I am one that has the scalp covered with lesions from DH. I have found that using Scalpicin will relieve the itch, pronto.

1desperateladysaved Proficient
1desperateladysaved
Posted

Is that why my head really itches sometimes?

IrishHeart Veteran
IrishHeart
Posted

Oh yes, I get the itchies if I get glutened, too.

I just wait for it to subside. I have never found that anything like Benadryl helps me.

Most people take Benadryl and pass out sleeping, but I am wide awake and feel like I am jumping

out of my skin.

Gluten agitates me, so I am more likely to have insomnia and a banging, erratic heart from it, rather than the sleepies.

If I do finally fall asleep, I am restless and have wicked nightmares. (poor hubs has been awakened by my yelling)

If I get hit with CC, I get small red blisters on my scalp, and they clear up in a few days.

coco676 Newbie
coco676
Posted
  • Author

Well thanks for confirming that this happens to other people! I don't know anyone else on a gluten-free diet so I really appreciate the community this forum provides!

mushroom Proficient
mushroom
Posted

Most people take Benadryl and pass out sleeping, but I am wide awake and feel like I am jumping

out of my skin.

You and me both. If I really need to stay awake, Nyquil does the trick :P

IrishHeart Veteran
IrishHeart
Posted

You and me both. If I really need to stay awake, Nyquil does the trick :P

so, what IS IT with all that stuff? do we live in opposite world?

Things that make people all dopey and calm turn me into a nervous nelly 2 year old on candy and steroids! :lol:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

so, what IS IT with all that stuff? do we live in opposite world?

Things that make people all dopey and calm turn me into a nervous nelly 2 year old on candy and steroids! :lol:

What it is with that stuff is that it really does jazz up the system, so they put all these dopey-making things in it to counteract the jazz. But you and I already got so much jazz that if they jazz us up further nothing will dope us down.

IrishHeart Veteran
IrishHeart
Posted

What it is with that stuff is that it really does jazz up the system, so they put all these dopey-making things in it to counteract the jazz. But you and I already got so much jazz that if they jazz us up further nothing will dope us down.

I actually followed that. (my doc explained it when I asked him--central nervous system yada yada yada--but your way is better).

We're JAZZY!!!!!! :lol:

frieze Community Regular
frieze
Posted

known phenomenon, that some women lose the ability to take benadryl as they approach 60. Gives them restless leg/agitation instead of the sedation.

IrishHeart Veteran
IrishHeart
Posted

known phenomenon, that some women lose the ability to take benadryl as they approach 60. Gives them restless leg/agitation instead of the sedation.

Oh, this is not new for me. I started doing this in my 20's and have ALWAYS had a problem with meds that are supposed to sedate me.

I cannot take codeine or narcotic pain meds either. (which is infuriating because it would help with the pain I am in)

Especially makes recovery from surgeries "tricky" <_<

mushroom Proficient
mushroom
Posted

I cannot take codeine or narcotic pain meds either. (which is infuriating because it would help with the pain I am in)

Dang! I can't either :blink: Were we separated at birth?

IrishHeart Veteran
IrishHeart
Posted

Dang! I can't either :blink: Were we separated at birth?

.....starting to think so after 2 years of comparing notes.... :)

My mother and sister--are the same way.

mushroom Proficient
mushroom
Posted

.....starting to think so after 2 years of comparing notes.... :)

My mother and sister--are the same way.

Not mine - my sister was hooked on codeine (you can get it OTC here, as in Panadeine, but I think they are making you sign for it now)

LauraB0927 Apprentice
LauraB0927
Posted

Gluten agitates me, so I am more likely to have insomnia and a banging, erratic heart from it, rather than the sleepies.

I was having a banging erratic heart beat for a little while and had no idea what that was!!! It didnt hurt or anything but it scared me as I was laying down to go to sleep and would feel this bounding heart beat about every minute or so!! I spoke to my doc and he didnt seem too concerned but it ironically stopped after I cut out all processed foods again last week and became real strict. (Hurricane Sandy here in NJ royally messed up my Primal diet when the lack of electricity for over a week wiped out all of my whole foods) Hmmm never put two and two together before on this one!! Thanks for mentioning it!!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,085
    • Most Online (within 30 mins)
      7,748
    M A Humphries
    Newest Member
    M A Humphries
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.