Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Night Time The Worst


Cmlgl

Recommended Posts

Cmlgl Rookie

Am I the only one who suffers the most at night. I can feel skin layers peeling off under my nail. My skin is burning and stinging and itching all at the same time.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



jlaw Apprentice

so not the only one! Two nights ago I could feel myself clawing off skin and scabs - still wasn't enough! Unfortunately, this is also a strong characteristic of scabies. One of the first things my derm asked me - 'was it worse at night?' When I said yes, he immediately diagnosed scabies. So watch out for that question on the 16th!

Link to comment
Share on other sites
pricklypear1971 Community Regular

I'ce packs. I usd to fall asleep with them packed under my arms. Put more in the freezer in case you wake up.

Link to comment
Share on other sites
squirmingitch Veteran

Night is THE worst! Sleep deprivation night after night after night. It may be a feature of scabies but it's also a feature of dh. A few shots of vodka helps.laugh.gif

Besides what Prickly suggests with the ice packs keep the A/C low & very cool & sleep only with the thinnest coverings you can get away with. When heat builds up the itch goes crazy. I have it on the back of my scalp & find it's much better if i sleep on my sides so the heat of my head pressed into the pillow doesn't build up on the back of my scalp.

You might try wearing gloves to bed to help you keep from scratching it raw. If you don't have gloves --- put socks over your hands.

Link to comment
Share on other sites
intolerant baker Newbie

I am glad you started this thread! I get really bad at night and was treated THREE times this year for scabies (nobody did a skin scrape to diagnose)before my primary made the gluten connection. I really thought I was the only one, esp. since they assume scabies when you get itchier at night.

Link to comment
Share on other sites
Cmlgl Rookie

It's my third trip to this derm in a year. She ties to say scabies I'll laugh. I co sleep with my husband and 3 kids.... Someone would have caught it in a year! Lol

Link to comment
Share on other sites
squirmingitch Veteran

If derms want to say scabies then make them PROVE it by doing a skin scrape. They always want proof of everything --- let's make THEM prove something. They work for US not the other way around.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



intolerant baker Newbie

If derms want to say scabies then make them PROVE it by doing a skin scrape. They always want proof of everything --- let's make THEM prove something. They work for US not the other way around.

I am learning so much these past couple of months. All the medication did was irritate my skin further (shocking!) I feel lucky to have a PCP that really listened to me and took me seriously

Link to comment
Share on other sites
squirmingitch Veteran

I am learning so much these past couple of months. All the medication did was irritate my skin further (shocking!) I feel lucky to have a PCP that really listened to me and took me seriously

You are very fortunate with that PCP ---- certainly not the norm as the numbers bear out. It's always good to hear there are a few good docs out there.

Link to comment
Share on other sites
jlaw Apprentice

It's my third trip to this derm in a year. She ties to say scabies I'll laugh. I co sleep with my husband and 3 kids.... Someone would have caught it in a year! Lol

This is exactly why I was happy to keep pursuing the DH thing! There is absolutely no way that it was scabies because not one person I know had it after a year. We don't co-sleep but we do sleep in the same room and the kids are always in and out of our bed. And at *least* my husband should've caught them! ...but the derm told me 'scabies is not always contagious'. When I questioned him, he said something like 'well it is in children but not in adults'. ????

Link to comment
Share on other sites
JaneWhoLovesRain Enthusiast

Some doctors are useless when it comes to diagnosing dh. Converstion I had with the first doctor I saw went something like this -

Dr: You have eczema.

Me: No I don't.

Dr: Yes, you do. Do you have family that has allergies?

Me: Yes.

Dr: Well it's eczema, it goes hand in hand with allergies.

Me: But it itches terribly, It's waking me up in the night.

Dr: Oh, you have "mites." (polite way of saying scabies)

Me: I DON'T have scabies.

Dr: Yes, you do, as soon as you said it itches in the night,I knew that's what you have.

Me: But I haven't had any contact with anyone.

Dr: Have you shaken anyone's hand?

Me: You can't get it by shaking hands.

Dr: Oh yes you can, that's all it takes, you'd be surprised how easy it is to catch.

Me: I don't have it any of the scabies spots (webs of fingers, wrists, breasts, groin, underarms).

Dr: You have an atypical case.

Me: Do you think I could have the celiac rash?

Dr: Oh no, that doesn't itch.

No skin scraping was done nor did he look for burrows and I had virtually no skin to skin contact with anyone in the days/weeks preceeding my big break out.

At this point I totally tuned him out and "fired" him. Why doctors are so quick to diagnose someone with scabies when it would be extremely unlikely and not look for the real cause is beyond me and borders on negligence.

cmigl - to answer your orignal question - yes, mine itched terribly at night. I would wake up and have to scratch and scratch and scratch, it felt like I was digging into my bones. Nothing seemed to help, I would wake in the morning and see blood on my pj's. I wish I had thought of putting socks on my hands, that sounds helpful, even though i probably would have thrown them off at the first itch.

Jane

Link to comment
Share on other sites
mushroom Proficient

Me: But it itches terribly, It's waking me up in the night.

Dr: Oh, you have "mites." (polite way of saying scabies)

Me: I DON'T have scabies.

Dr: Yes, you do, as soon as you said it itches in the night,I knew that's what you have.

Good heavens, everything itches worse at night, whether it be mosquito bites, psoriasis, DH.... You get under the covers warm in bed and the heat makes it itch. What an idiot. My psoriasis used to drive me nuts at night.

Link to comment
Share on other sites
Hopeful1950 Apprentice

My rash is always the worst early evening and at night.

The psychiatrist I consulted after 3 dermatologists told me I was crazy explained why (and it's not because little bugs are coming out at night). Although scabies will be more active at night, most rashes will also itch more during the evening hours.

Here's why: When we wake up in the morning our body's natural steroid levels are at their highest and they decrease as the day progresses. This is why fevers are higher at night, flu symptoms are worse, DH ITCHES MORE, etc. etc.

Why does a psych know this when regular docs don't?

Link to comment
Share on other sites
jlaw Apprentice

Wow Hopeful....that is amazing and I guess makes sense. I heard about being under the covers and heating up, but my night time itchiness would always start even before I went to bed...around evening.

Link to comment
Share on other sites
squirmingitch Veteran

My rash is always the worst early evening and at night.

The psychiatrist I consulted after 3 dermatologists told me I was crazy explained why (and it's not because little bugs are coming out at night). Although scabies will be more active at night, most rashes will also itch more during the evening hours.

Here's why: When we wake up in the morning our body's natural steroid levels are at their highest and they decrease as the day progresses. This is why fevers are higher at night, flu symptoms are worse, DH ITCHES MORE, etc. etc.

Why does a psych know this when regular docs don't?

Good info. Thanks Hopeful! Yes, why does a psych know that when regular docs don't?

Link to comment
Share on other sites
Lynr Newbie

I have the worst time at night or if I sit on my leather sofa. The head seems to intensify the itch. My doctor asked me if I would do the treatment for scabies and I replied, "Is that due to not enough vegetables"? LOL I agreed to the treatment but no one in my family has 'caught' this rash either.

I agree with the ice treatment. It does seem to calm it somewhat.

Link to comment
Share on other sites
jlaw Apprentice

I have the worst time at night or if I sit on my leather sofa. The head seems to intensify the itch. My doctor asked me if I would do the treatment for scabies and I replied, "Is that due to not enough vegetables"? LOL I agreed to the treatment but no one in my family has 'caught' this rash either.

I agree with the ice treatment. It does seem to calm it somewhat.

lol!! Lyn, that's scurvy!

Link to comment
Share on other sites
  • 4 weeks later...
sisterlynr Explorer

lol!! Lyn, that's scurvy!

LOL Just saw your reply. . . yes that is scurvy. My cousin had to tell me that scabies in "regular" folks talk was body lice. :unsure:

I took the treatment, I was desperate. LOL

Link to comment
Share on other sites
mendylou Rookie

Mine is sooo! much worse at nite. I keep my bedroom temp cool, sleep with only a sheet for cover, and always have my feet uncovered. I try not to scratch but sometimes I can't stop from scratching & then it gets worse.

Link to comment
Share on other sites
Lady Eowyn Apprentice

Mine is worse evening and night.

Sitting watching telly in an evening - not good.

In the past, before knowing what it was, I tried wearing gloves and putting bits of elastoplast on end of each finger :ph34r: .

Link to comment
Share on other sites
  • 3 weeks later...
Darkfire Ann Newbie

Mine is worse at night and when I wake up. Waking up may not be morning, it may be night, noon or even 8pm. I do not sleep on a regular schedule. Right now it's keeping me up. I tried to sleep. I am three hours after my first upped dose of Dapsone to 100MG. The itch seems to get worse about 3-4 hrs after a dose.

Link to comment
Share on other sites
  • 2 weeks later...
EM-MV Newbie

It is not just the itching that makes me lose sleep. When I have active DH, I wake up around 3 a.m. even if I'm not itchy. Once I'm awake, I get itchy. I'm wondering if there is a possible hormone/menopause connection with DH emerging in women who have never had gluten-intolerance symptoms before. After more than several years of hot flashes, night sweats and insomnia, now I have slightly different insomnia with DH...but perhaps hormones are a trigger, like stress?

Link to comment
Share on other sites
squirmingitch Veteran

Someone posted a medical explanation about why dh itches so much worse at night or when we sleep & it does have to do with hormones but not necessarily menopausal hormones.

Link to comment
Share on other sites
Darkfire Ann Newbie

I am also menopausal/post menopausal dec 28th marks my 3yr surgery date of my hyster/rso. What I thought were Menopausal symptoms may be low Iron. Some of the temperature issues and flashes can be my low Iron. So I cannot honestly make any sense out of it only to say when the sun goes down the monster wakes up.

Link to comment
Share on other sites
sisterlynr Explorer

Mine is worse at night and when I wake up. Waking up may not be morning, it may be night, noon or even 8pm. I do not sleep on a regular schedule. Right now it's keeping me up. I tried to sleep. I am three hours after my first upped dose of Dapsone to 100MG. The itch seems to get worse about 3-4 hrs after a dose.

I have been taking Dapsone 50 2x a day. I started eating gluten free and taking Dapsone the same day. I thought I was itching more after the Dapsone was taken but I just kept taking it. It has been 2 full months now and I am so much better! I have an area on my lower back that is itchy right now but nothing like what I was before. My doctor didn't suggest a higher dosage for me.

I did have to take 2 Benedryl every night. I also kept the a/c cool and used ice packs. I now only take 1 anti-histamine and not every day. Good luck!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,036
    • Most Online (within 30 mins)
      7,748

    Davidt4667801z
    Newest Member
    Davidt4667801z
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Katiec123
      @RMJ it makes sense as it’s something I’ve experienced more than once. Currently 24 weeks and baby is doing well! Will be seeking more medical advice today 
    • Manaan2
      Thank you! This is great information and perfect timing because we have our first appointment for a second opinion tomorrow.  
    • trents
      Bright blood in the stool would indicate bleeding down at the lower end in the colorectal area as opposed to the small bowel below the stomach where celiac manifests damage to the villous lining. Are these blood stools persistent? It's not unusual for this to happen once in a while to most anyone when a small surface vessel breaks, kind of like a nose bleed. As Scott Adams said, you must continue to consume regular amounts of gluten if the specialist will be doing additional testing for celiac disease, which could include an endoscopy with biopsy of the small bowel lining.
    • Bev in Milw
      Checkouts gluten-free recipes at twww.redstaryeast.com We tried a bread machine years ago and weren’t happy with results. Bread machines have pre-set rise & bake times.  Unfortunately, the program doesn’t adjust to slight differences when measuring, relative humidity or temperature of ingredients & in kitchens.  Lots of efforts for ONE odd- sized loaf that hard to cut into useable slices.  College-aged son found best use for bread machine was as heavy duty mixer that ‘kept dust in the box.’  He would pre-measure ingredients for 2-3 loaves & use machine mix up individual batches.      Since gluten-free bread needs  to rise only once, each recipe of dough went into a loaf pan. Pans sat counter to rise—time dependent of temp in kitchen. Then, baked in oven until he, not machine, decided it was done.     Took ~10 min extra up front to measure & mix additions but adds nothing to rise & bake times.     Loaves are great for slicing (Slice extra before freezing!). One mess to clean up, saves time & energy since you need to bake  as is half as often (If  you plan to bake lots more than bread, opt for KitchenAid/ heavy duty mixer instead.  Cover with dish towel to capture dust!)     Personally, I’m sure I had as a kid since I’ve never been a fan  of bread. .  Have been wrapping corn tortillas around things for 40+ years.  Can still get a dozen 12-pks of tortillas for same or less than price as 1 load of gluten-free bread. PLUS. the tortillas have more nutrients!         
    • CelestialScribe
      Welcome to the forum. You are lucky because in Korean food, many classic meals such as bibimbap without sauce, barbecue meats and some kinds of soups generally do not have gluten. But it is a good idea to confirm with the restaurant workers for safety reasons. Regarding certain locations, I enjoy going to places such as Plant in Seoul and Sprout in Busan. Moreover, using applications like HappyCow or TripAdvisor can assist you to discover additional choices in the regions you plan to visit. One big tip: it is good to know some important Korean sentences, for example 'I cannot eat gluten' (geulluteuneul meogeul su eopseoyo)  or 'Does this have gluten?' (igeoe neun geulluteuni deureo innayo?) because they can be very helpful. If you are considering getting a local guide, I'd suggest this one https://gowithguide.com/korea They were very helpful when I needed to find places with gluten-free food options because they provide tours tailored to your preferences. Good luck with your travels! 🍻
×
×
  • Create New...