DH and Itching!!

[blackbird]

I'm having a gastroscopy next week. I was diagnosed with malabsorption last year (after SeHCat test - not sure if this is correct spelling!) but as the blood test for coeliac was normal the docs said the malabsorption/diarrhoea was due to previous gastric surgery). Absolutely nothing helped and the diarrhoea has all but ruined my life.

About 2 months ago I developed a rash, which my GP (family doc) said was psoriasis. It got steadily worse - and I mentioned it in passing at a routine appt with the gastroenterologist. He immediately said CD rash. He was puzzled by my blood test which was absolutely normal but has booked a biopsy.

In the meantime I've been eating gluten as normal - one thing I've learned from this forum! I don't know whether this rash is dermatitis herpetiformis - it doesn't look like the pictures I've seen on the internet. It's not a collection of separate spots, it's one big purple weal that covers my entire upper torso.

My problem is the unbearable itching. I haven't slept for more than a couple of hours at a time for weeks. My sheets are spotted with blood where I scratch till I bleed. To make it worse, whenever I put any cream on - even the bland aqueous cream - it feels like putting salt in an open wound.

I've only got 5 more days to the biopsy. Hopefully, whatever the outcome, the docs will offer some relief. But I'm now desperate, not knowing how to survive these 5 days. Up till now I've sort of coped, but I think things have reached a head now. Does anyone have any suggestions as to ways to relieving the itching while still eating gluten? I'll try anything.

Thank you.

[aklap]

ACK! Sorry to hear that Bird. You might call the Gastro or the Dermatologist that is doing the biopsy to see if there is something they can prescribe for you or something you can get at your local pharmacy/drug store. In the US we have cremes with hydrocortisone that helps relieve itching. Best check with your doc - you'd hate to apply something that might alter the test results.

Good luck with your appointments! Please let us know how they go.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[celiacmaine-iac]

I'm sorry you are so miserable. As someone who has been there with the itching, I know exactly what you mean. I was so exhausted by the end of my gluten challenge because the itching kept me up all night. I too was only sleeping about 2 hours a night, and only because I fell asleep from sheer exhaustion. I found that the minute my body got a little warm from the blankets that the itching would start full force. Do check with your doc about what you can use. I didn't find any non-prescription remedies that helped signifigantly. Try not to scratch if you can help it. I'd hate to see you get an infection on top of everything else. I found I was even scratching during my sleep, so I know how difficult it is not to do it. I would also scratch deliberately, even knowing the risk of infection, and also knowing that when I did it that it would burn for an hour afterward.

Also, after your biopsy, if you go gluten-free, don't expect the itching to subside immediately. For me it was about a week to two weeks before I noticed the itching was calming down, and it took about 6 months for most of the itching to stop. I've also found the times that I've been "glutened" that the itching will generally start up about a week after the fact, but doesn't last as long now, and generally just affects my left leg and sometimes my forearms.

Good luck! I hope you are on the path to recovery soon.
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Steph

[blackbird]

[aklap]

Does applying an ice pack to the area help it at all?

You're allowed to vent
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[celiacmaine-iac]

[celiacmaine-iac]

Blackbird- I'm not sure how easy it is to access mental health resources where you are. Is there any chance you could see a counselor to talk about some of the issues you are facing right now? It might be helpful to talk to someone in person.

Hopefully you will have answers soon. I can't remember if you are planning to go GF as soon as the biopsy is finished? If you do, and that helps the itching, things will look a lot better soon. Within a week of going GF I was finally getting some sleep. And please don't be afraid of the endoscopy. Like many have said here, it's not that bad.
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Steph

[adminhelper]

Scooted this over. Hopefully you find more answers in here.

[blackbird]

By 2am last night I was going mad with the itching again. So far I've tried prescription hydrocortisone, fungal ointments, nappy-rash (diaper?) cream, a whole range of bland aqueous creams, aloe vera, and a herbal ointment. All of them sting and burn, and increase the itching.

Well, I'd put an icepack on my shopping list after your recommendations and was wishing I had one last night, when I had an idea. I raided my freezer, and gathered all the packs of frozen vegetables I had in there - peas, sprouts, beans, anything I could find. I put a plastic sheet over the bedding and lay on it with all these frozen vegetables arranged over my body. BLISS!!!

For anyone reading this feeling as desperate as I was, it really does work. I kept them on till they started to defrost, by which time the itching had subsided enough for me to sleep for a couple of hours. When it woke me again at 5am the vegetables had re-frozen, so I went through the whole procedure again. OK, it's not a cure, but it's the only relief I've had for weeks, and I want to say thank you to those who suggested/recommended it.

Today I bought some proper ice packs, which I've got ready in the freezer.

It sounds stupid to say I want the gastroscopy to confirm CD. No-one in their right mind would want such a disease, but to be honest it's the only hope I have. If this isn't CD or DH I don't think I can cope any more - my GP has already said she has no idea what the rash is, and waiting months for a hospital appointment would be a nightmare. At least as celiacmaine-iac says, there is a treatment for DH.

My gastroscopy is on Tuesday (I'd even got the day wrong - does CD affect your mind too?). Think of me please. I'll let you know how it goes.

And thanks for all your support.

[rpf1007]

I'm glad you found some relief! We'll be thinking about you on Tuesday.
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Rachel

[Kirsty27]

Have you tried Chinese medicine? My husband has found the Chinese herbalists more useful than the doctors, who sometimes don't think outside the box. (We're in the UK too). He had to drink a tea that looked and smelt like forest sweepings... but the relief he experienced after just a few days was indescribable.

There is a 'Doctor & Herbs' in most main UK cities.

The doctors said it was "quacky". But he got better.
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Kirsty

http://www.MyGlutenFreeChild.com