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      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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Night Time The Worst
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Cmlgl    0

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.

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jlaw    3

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!

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squirmingitch    494

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.

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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.

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Cmlgl    0

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

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squirmingitch    494

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.

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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

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squirmingitch    494

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.

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jlaw    3

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'. ????

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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

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mushroom    1,205

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.

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Hopeful1950    16

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?

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jlaw    3

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.

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squirmingitch    494

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?

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Lynr    1

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.

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jlaw    3

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!

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sisterlynr    7

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

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mendylou    2

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.

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Lady Eowyn    14

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: .

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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.

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EM-MV    0

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?

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squirmingitch    494

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.

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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.

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sisterlynr    7

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!

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