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JaneWhoLovesRain

Member Since 09 Mar 2012
Offline Last Active Oct 07 2014 03:52 PM
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#840134 So Is This Dh?

Posted by JaneWhoLovesRain on 30 November 2012 - 03:16 AM

Thanks for the replies. I currently have it also on my inner thighs on both legs midway down to my knee, and it's starting in my underarm area as well. I went to the Doc today and he's sending me to allergist. So we'll see what's going on hopefully. He did prescribe a steroid dose pack, but I'm not sure if that'll help.


Someone correct me if I am wrong, but I believe should it come to you having a biopsy the steroids will affect those resuls (false negative). Just something to keep in mind.
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#804736 DH Photo Bank

Posted by JaneWhoLovesRain on 19 June 2012 - 02:47 PM

Here are my pics. (And let me also add I haven't been officially diagnosed either so I wasn't sure if I should post or not but since the above two posters are in the same boat I decided to go ahead. I do hope someone with a positive biopsy will post.)

Some of these are rather gross, sorry!!

http://i1172.photobu...ne/IMG_2637.jpg
http://i1172.photobu...ne/IMG_2475.jpg
http://i1172.photobu...ne/IMG_2444.jpg
http://i1172.photobu...ne/IMG_2441.jpg
http://i1172.photobu.../IMG_2298-1.jpg
http://i1172.photobu...ne/IMG_2244.jpg
http://i1172.photobu...ne/IMG_2342.jpg
http://i1172.photobu...ne/IMG_2601.jpg
http://i1172.photobu...ne/IMG_2435.jpg

These were taken at various stages of my rash, I'm not sure what was taken when.

Features:

Started out with one small itch on the back of my neck, took two months for it to go elsewhere and when it did it really did!!

Jumped from neck to both elbows, both hips, back of both knees.

Severe uncontrollable itching, would come in bursts. I would have to scratch and scratch for 15 mintues, then it would get better until the next burst. Would wake in night and scratch.

Burning feeling 1-2 days before breakout.

Skin was very prickly and burned, did not like having anything touch it. Taking a shower was very uncomfortable, did not like water or the washcloth on my skin.

At times it would feel like hives. After scratching an area over and over it would become very inflamed

After a couple weeks of rash on elbows, hips and knees it spread to lower back, slowly going up spine and then spreading outwards. The elbow rash spread up and down my arms about 3 inches both ways. Then the front of thighs broke out, then the front and back of shoulders broke out, then the hip and back rash spread into my stomach. Hundreds of little dots.

Then the whole thing started going away. Total time - 6 months. It is now almost entirely gone, just a bit in one spot.

Edited to add - I've been gluten free for 2+ years and think I had some cc whch caused the rash. I stopped eating the one food I thought may be giving me this. Also started taking loratadine. Rash started to go away. I then reintroduced an oreo a week (as a test to see what would happen and also because I had an appt with dermo and didn't want it to disappear entirely before I met with him). Rash came back a bit and hung around but nowhere near as severe as before. Stopped the oreo after my appt and rash continued to disappear.
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#801827 Can Coeliac Mimic Meniere's Disease

Posted by JaneWhoLovesRain on 08 June 2012 - 05:07 PM

Hi Unhappy (I'm unhappy too if it's any consolation)

I started having severe vertigo attacks almost 5 years ago (hours long, can' move). Was diagnosed with meniere's, mav, virus, bppv, etc. Every doctor said something different, nothing conclusive. I went gluten free almost 2 and a half years ago after hearing people at menieres.com say it helped them. So in the first 2.5 years of this vertigo stuff I had I think 6-8 severe attacks. In the second 2.5 years, after going gluten free I've only had two attacks. One of them was after an extremely stressful day, possibly the most stressful of my whole life, and the other was when I was quite sick with influenza. I cannot say with 100% certainty the gluten-free diet helped but I'm not willing to risk going back on gluten to test it. I've also gone very low sodium which may be helping - that was about a year or little more before going gluten-free.

However, what I haven't noticed a big difference in is the way I feel between attacks, motion sick and kind of off balance. My hearing is not too bad, it's worse in the high end than low end, which is opposite of menieres. I do have a lot of tinnitus which hasn't changed much over the last 5 years. It comes and goes.

Two weeks isn't long enough to give your diet time to work, you have months and months worth of damage so it will take time to heal. Be patient. If you are confirmed to have celiac you must stay away from gluten, no exceptions.

Vertigo is an extremely difficult symptom to get a correct diagnosis for and often both the doctor and patient end up very frustrated. The doctor because he can't fix it or even figure out what is causing it and the patient becaue she/he wants to be well and live a normal life like everyone else.

You are young and I feel so bad for you that you have to go through this at your age. Eating a special diet may make you feel like you are missing out on a lot. It is so hard to eat out when you can't eat anything on the menu and things like a barbeque may seem out of the question. It will get better. Please don't give up, there is no certainty that your hearing will get any worse. If it is found that gluten is the source of your problem then it most likely will not get worse and will probably get better, as long as you give up the gluten. I admit it is hard to eat gluten-free, especially when I see all these yummy recipes I want to try, I used to love cooking but not so much any more. I'm eating an anti-migraine diet, anti-meniere's, anti-celiac and anti-cholesterol, rather boring at times, but if it will keep the vertigo away it will be worth it.
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#799417 Dermatologist Was Mean, Made Me Cry...

Posted by JaneWhoLovesRain on 30 May 2012 - 12:46 PM

Raven, I'm sorry to read all that you are going through. I'm in a similar boat, trying to get answers but getting nowhere. I had a visit with a very mean dermatologist today, but not quite as mean as yours. :angry:

Your symptoms and history are very suggestive of DH, I don't know why your doctor had to be such a jerk about it.

I can't add any advice to all that has already been given to you other than to say the only thing that gave me any relief was the generic brand of the anti-histamine loratidine (sp?). My rash is just about gone but when it was there it was the worst rash and itching an d prickling I have ever had in my life, unbearable. As some areas slowly cleared up, new spots would emerge, always bilateral.

Hugs to you, Jane
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#785525 Symmtery In Dh

Posted by JaneWhoLovesRain on 05 April 2012 - 02:28 PM

You would think the symmetry would tip off the docs, because scabies wouldn't show the same type of symmetry.

When you see the complete confidence that they have as they completely misdiagnose you, it gives one pause about what they might say in more life threatening situations.

Since I was "diagnosed" with scabies I've been reading up on it and surprisingly I found that it does present with a bilateral symetric rash, always, they say. And the reason is because the rash isn't coming from scabie bites as many people think it is but it is coming from fecal matter (yuk) that the scabies leave in their burrows. This is then absorbed into the blood system and a systemic allergic reaction is activated. Systemic rashes are usually bilaterally symmetric. The rash of scabies does not correlate with where the scabies are burrowing. I wish any of the 3 doctors or NP's that I have seen would have explained this to me.

I had a biopsy on Mondy but don't have results yet. She took a total of 3 samples, one for DH and two for whatever. The later two she took directly from the lesions, so if in fact it is scabies as they all think, it doesn't seem it will show from the lesion, she sould have found a burrow and taken it from that.
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#782839 Symmtery In Dh

Posted by JaneWhoLovesRain on 25 March 2012 - 03:48 PM

I have not been officialy diagnosed with DH and only first heard of it a couple of weeks ago. But even before I heard of it I thought how strange that my rash is symmetrical. Both elbows, both hips, both knees. Though when it first started it was on one side of my neck only. I'm continually breaking out in new spots and it seems almost all of them have a corresponding breakout in the opposite side.

HOWEVER, even though this may sound like a "typical textbook case" the dermatologist tells me it isn't DH, but scabies. He further told me it doesn't look like DH and that DH doesn't itch (that's the first and only time I heard it doesn't itch). If this really is scabies it certainly isn't a "typical textbook case" becuase my elbows are the only spot I have it that corresponds with scabies. I don't have it in any of the other typical scabies spots.

I think that just like the intestinal version of scabies, with DH we all have variations that are our own.
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