Going crazy!

[celiacmaine-iac]

The steroids (creams and prednisone taper) did nothing for me.

Steph

[Lyonspam]

Hi Ostrich

I've just had blood tests done and tested positive for celiac disease. I have an intense itching on the skin of my forearms and lower legs, this has recently spread to my abdomen and lower back. I scratch for hours at a time and can't get relief. I also have 'restless' legs, the only thing that alleviates that is a strong massage of the calves and feet. The doc tells me that I have to have an endoscopy for a stomach biopsy to 'really' confirm celiacs and then a gluten free diet should alleviate the skin rash and the celiac problem. Have you had these done yet? Do not let them try anything on you like injecting your rash (if you have one) with steroid injections or spray them with liquid nitrogen - it doesn't work. Neither does taking thalidomide or steroid tablets. I've also had Icthopaste bandages and some liquid to add to my bath, they don't work. Sun light treatment doesn't work either. I have read that Dapsone cream along with the gluten free diet does bring relief but I've yet to try it.
Good luck with it all.
Pam

[celiacmaine-iac]

Pam,
Just adding that if your endoscopy is negative, ask for a skin biopsy. Not everyone with DH will have a positive endo, but if you have DH you are considered to have CD. It sounds like you have the intestinal symptoms too though, if I remember right. I think you mentioned in another post that you are having trouble with lactose? Hopefully you'll have an answer soon. Good luck.

BTW Os, how's the rash doing? My left leg is finally starting to heal after almost 6 months GF. It's itching less every day, and the rash is starting to subside, getting patchier every day. Hope you can say the same. If a person hasn't had this, they can't even imagine what it's like.

Steph

[ostrich]

Pam - Thanks for the help! I'm sorry you've got these issues too. Really sucks. No, I'm not going to try steroids again. They actually made the rash worse....much worse. Does the massage really help with the rash? Or is that just for the twitchy legs?

Step - SSDD. Rash is still going strong. I'm on round 2 right now: it starts on one side of my leg, ripples outward towards the other side, then reappears at the same beginning spot. I've been trying to avoid meds (see above), so I've been using cortisone cream and extra strength lotion. But I'm really happy yours is healing!
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[Lyonspam]

Steph - Hi and thanks for the info. The hospital have mentioned skin biopsies but want to do the endoscopy first, just wish they would do it sooner rather than later - they don't rush these things do they.

Os - Hi and thanks to you too for your reply. Can't tell you how good it is to talk to people who understand. How often do people tell me to stop scratching, that don't understand the intensity of the itching! The strong massage works for the restless legs but unfortunately not for the rash. Do you get the restless legs bit?
I want to start on GF but I'm told not to as it will jeopardise any endoscopy results. I feel like I'm going crazy with it sometimes. On the bright side I'm told that GF will make a big difference.

Hope you are feelin better.
Pam

[Topher28]

hey Lyonspam, is your last name Lyons? I only ask because my last name is Lyon (no s) and I think that's quite a coincidence! I'm of Scottish and English heritage, so I'd almost like to think we're related! haha. They say this is genetic, right?
_________________
Somebody told me that this is the place
where everything's better, everything's safe

[Lyonspam]

Topher28,
My name is Lyons - with the 's', suppose we could still be distantly related, it could explain the hereditary thing. Someone once told me that the name generated from France, so if all our relatives originated from there then it would be a big yes.How is your French?
Are you suffering from celiac or are you DH?