Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Am I Doing Something Wrong? Can't Take This Anymore.


  • Please log in to reply

16 replies to this topic

#1 GFreeMO

 
GFreeMO

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,330 posts
 

Posted 02 January 2013 - 12:58 PM

Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.
If I am not eating gluten, why the DH, I don't get it.
  • 0

Celiac.com Sponsor:

#2 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 02 January 2013 - 01:09 PM

Have you tried iodine elimination? A lot of DH'ers find it makes it a zillion times worse. And DH hangs around for a long time, unfortunately. :( - longer than GI antibodies, that's for sure.
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 GFreeMO

 
GFreeMO

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,330 posts
 

Posted 02 January 2013 - 01:21 PM

I haven't tried low iodine yet....It sounds next to impossible. Isn't there salt in everything? I will if I have to though.
  • 0

#4 Darkfire Ann

 
Darkfire Ann

    Community Member

  • Advanced Members
  • PipPipPip
  • 40 posts
 

Posted 02 January 2013 - 01:33 PM

I am working on this myself. It is almost impossible but it can be done. Apparently most salt is NO iodine in stuff you buy. But sea salt isn't. I bleed so bad it scares me. I thought I was dying the first time my leg bled it was running into the toilet I was scared to death. The Derm was like....Oh it happens..>WHAT?
  • 0

#5 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,326 posts
 

Posted 02 January 2013 - 05:14 PM

I feel your pain Gluten-Free. I'm going through one of those myself which began in early Sept. & stillllllll going. I think ....... but won't finish the sentence for fear of jinxing myself. :lol: :lol: I did that once before & actually said it & BAM! the dh went nuts. So shhhhhhhhhhhhh......

Okay. DH can present at any time for up to 2 years ( & some references say :ph34r: 10 years :ph34r: :ph34r: :ph34r: ) after going gluten-free. The antibodies have to get out of the skin. So this can happen & no, you're not doing anything wrong. If my hubs & I didn't have a gluten-free household & we did not prepare ALL our own food, 99% of which is whole foods; then I would be totally freaking (okay, I am totally freaking but not b/c I think I've been cc'd) thinking that I was getting glutened from somewhere. But since I am 110% positive I'm not getting gluten from anywhere then I know this is just what it does.

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!
  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 02 January 2013 - 05:44 PM

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!


Leeches come to mind :rolleyes:
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,326 posts
 

Posted 02 January 2013 - 06:24 PM

Leeches it IS! I'll run right out tomorrow & get a couple thousand. :lol: :lol: :lol:
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 sisterlynr

 
sisterlynr

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 153 posts
 

Posted 03 January 2013 - 01:08 AM

Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.
If I am not eating gluten, why the DH, I don't get it.


I found I was eating what I thought was corn chips and found out later the restaurant had changed to flour/corn chips. Maybe you can review your food intake? I was a salt freak and stopped using any salt unless it was sea salt w/o iodine. I am on Dapsone and I really feel it has been a life saver for me. I suffered for 7 months the intense itch, sting, burn and yes the blood. It seems these lesions bleed more than anything I've ever experienced. Must have something to do with the properties of DH.

I'm having a bit of a new breakout (in the place of healed lesions) on my lower back. I've been applying Tolnaftate 1% to dry these places. It has petroleum to smooth it on. . . seems to dry but not flake.
  • 0

Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#9 GFreeMO

 
GFreeMO

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,330 posts
 

Posted 03 January 2013 - 01:56 PM

I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.
I appreciate all of the help.
Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.
  • 0

#10 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,326 posts
 

Posted 03 January 2013 - 03:55 PM

I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.
I appreciate all of the help.
Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.


Yes, I find that happens to me too. Also I have noticed that when a dh flare is really getting going I actually have a little bit of a temperature. The temp. goes back to normal in a day or two.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#11 GFreeMO

 
GFreeMO

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,330 posts
 

Posted 03 January 2013 - 04:00 PM

Same here with the low temp. Blows that we have to deal with this but it really is comforting to know that we are not alone in it all.
Do you ever get DH on your scalp? MIne is now coming down my forehead. I look and feel awful.
  • 0

#12 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,326 posts
 

Posted 03 January 2013 - 04:28 PM

Oh Gawd! The scalp!!!!!!!!!!!!!!! It's horrid just horrid! There are crusts & where there aren't crusts there is oozing. The hair gets stuck to your head. I will wake at night & the pillowcase is so wet with oozing I can't find a dry place for my face. In the morning the pillowcase is stuck to the pillow. It's disgusting & makes me feel disgusting. I've taken to washing my hair each & every night b/c the more dried ooze & crusts that build up seems to be the more it itches. I get ones just out of the hairline & they look awful. I have also had tiny, quick ones on my face & so far....... I live in fear of the day I get big old honkers on my face.
And my ears....it gets in my ears, on the edges of my ears, on my earlobes, INSIDE my pierce hole of the earlobe.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 ciamarie

 
ciamarie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 419 posts
 

Posted 04 January 2013 - 10:08 AM

I've actually been doing pretty good, thankfully! Even itching behind the knees is a rare thing for the last couple of weeks. I think I may be absorbing iodine better. For salt, I've been using the Morton canning & pickling salt. It has NO additives, not even for anti-caking. I quit sea salt for a while, went back to it for a bit and think I had some issues with it. Otherwise I do eat salted butter and eggs with yolks just fine. But I did have some issues with 1 brand of butter I tried, so there was something in there that bothered my system.

I did want to add that I'm still avoiding the sulfites, as well as MSG type ingredients. That helped a ton, also.
  • 0
Gluten-free since the end of October 2011

#14 Bubba's Mom

 
Bubba's Mom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,457 posts
 

Posted 05 January 2013 - 08:31 AM

Just one more thing to look at...some laundry soaps may contain gluten. I know Whisk is one of them.
Stress can also bring out DH. Maybe the stress of the holidays brought yours out? I hope it goes away for you. It's miserable!
  • 0

#15 L.J.

 
L.J.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 113 posts
 

Posted 05 January 2013 - 10:04 AM

I too have rashes--have for awhile. It definitely got better when I went gluten-free, peanut free, and although I don't do the "low iodine diet"--I do not add *any* salt (or spices) to food...I only use pepper. At first, I thought things tasted bland--now I like it. When I do eat something that hubby fixed with salt--my rash gets more inflammed.

Another thought--this may or may not apply to anyone but--we can have other allergies that give us crusty, itchy, scaley, bleeding and oozy rashes. I found out my cell phone cover (rubber) was affecting my ears/neck/. I changed shampoo, conditioner, hair dye, and laundry soap a long time ago--but still had the rash on my neck, ears, forehead. It appears that contact allergies "spread" and go "further" than just where the contact of it is.

Now, I am working on getting rid of the rubber in my house (easier said than done)--cell phone case is gone--and in almost two days my ears are better since getting rid of it :D Shhhhh ;)
But, I still have a rash on my forehead--Guess where I found rubber elastic??? Last night--on my shower cap that is right where the rash on my forehead and scalp is (I also lost hair there too) :rolleyes: Sooooooooooooo, I am skipping on the leeches :lol: and buying a new hairbrush (new one with no rubber on it) and looking for something to cover my hair at pm for when I wash my face... Today!!! :D
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: