• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Night Time The Worst
0

Rate this topic

25 posts in this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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'. ????

Share this post


Link to post
Share on other sites


Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites

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?

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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: .

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,132
    • Total Posts
      939,837
  • Member Statistics

    • Total Members
      66,112
    • Most Online
      3,093

    Newest Member
    OliviaFW
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff. Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's. Hope you'll be able to eat meat again soon, even if in small amounts. So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient. Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips. I'll tweak a few things here and there and keep trying.
    • I see banana pudding in your future! ENJOY! I'm glad you came back to report what happened with the cookies.
    • Hey Josh! Corn is hard to digest even when one has a perfect gut. Imagine a damaged gut trying to cope with corn. Ditch the corn for a while. As far as soy goes, many of us, especially in the first 6 months to a year, have problems with soy. Some have problems with soy for years & years & others are able to have soy after their guts heal up. Some never have problems with soy at all. We are all individuals & react differently to different things.  I've never heard anyone having problems with sunflower or safflower oil in the 6 years I've been on this site. As far as lactose goes, again, I'm going to say we are all individuals...... I never had a problem with lactose, some do, some cut it out for a period of time & then later find it presents no problem for them and some can not tolerate it at all and some don't have any problem. A food log is a great tool for you to use to figure out what might be a problem.
    • Ok just to set the record straight, I tried one more cookie and then another and now half the package is gone so clearly these cookies are not to blame for the reaction I had that day. Still don't know what got me but it wasn't these!
    • Welcome, Josh! You have two choices: 1) go back on gluten and get tested.  This will help confirm if you have celiac disease or not.  Some 10% of celiacs are seronegative.  You should confirm if you had the complete celiac panel.  I personally am only positive on the DGP IgA, even on follow-up Testing.  Okay, if you have NCGI, the treatment is the same.  But with a celiac disease diagnosis, that puts you at risk for other autoimmune disorders or cancer (though rare).    You could have both IBD (Crohn’s or Ulcerative Colitis) and celiac disease or maybe Hashimoto’s Thyroiditis.  Knowing this, your doctors can be on the alert for future problems.  It can also help you adhere to a LIFELONG gluten free diet because you will have NO DOUBT.  The endoscopy also provides an initial baseline.  2) stay gluten free for life.  Learn all that you can about cross contamination, avoid eating out (it is like Russian Roulette).  Eat fewer processed foods.  Learn to read labels.  Keep a food and symptom diary to identify other food intolerances.  Read our Newbie 101 advice pinned at the top of the “Coping”section of the forum.  Healing can take months to YEARS.   I have a formal diagnosis (four years ago) and my only known symptom was anemia.  No GI issues.   My hubby went gluten-free 16 years ago per the poor advice of two medical doctors.  We both know odds are that he has celiac disease, but we can not afford for him to be sick for a three month gluten challenge.    He will tell you that I get way more support from medical, family and friends.  We were easily able to get our daughter tested because of my diagnosis.  Easy for me to get a bone scan confirming osteoporosis, etc.   Only you can decide what is best in your case.  I wish you well.  
  • Upcoming Events