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Accidentally Glutened
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15 posts in this topic

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.

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

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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.

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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!

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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

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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:

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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.

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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:

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

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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" <_<

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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?

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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.

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.....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)

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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!!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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