Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

No Blood Screening Results Of Dh Test Results But Drugs Seems To Be Helping...


  • Please log in to reply
13 replies to this topic

#1 mamat78

mamat78

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 30 March 2013 - 08:36 AM

Hi there,

I am still anxiously waiting on the results of the blood screening I got 2 1/2 weeks ago now. I am really hoping they are back after the easter weekend. Anyways, I also realized that my doc took a DH test completely wrong so I will likely get a negative result back on that one. 

I was perscribed dapsone on Wednesday so I have taken 3 days worth (50 mg dose). Although I still have moments of itching (and then burning from itching), the need to sractch my legs off seems to have subsided. If Dapsone is working, can I assume that eventually, I will get a positive diagnosis for celiac? I am so tempted to just go off of gluten and self diagnose rather than wait for what seems like forever to get results back and then further testing. 

 

Yesterday was a big gluten day and by the end of it, I went to bed so bloated and uncomfortable feeling, I swore I would be going gluten free as of today. I keep reading though that I just need to hold on and wait for a diagnosis or at least the tests before I go for it. 

 

Also, people with DH, does cholorine aggrivate your skin? For years I have blamed chlorine for my outbreaks but what I found was that I could tolerate it a few times and then suddenly I would break out again (for a longggg period of time). I have always just blamed the hot tub for my skin but now I am thinking it has been coincidental although if I am ever broken out even just slightly, the hot water in the hot tub seems to aggrivate it quite a bit.

 

 


  • 0

Celiac.com Sponsor:

#2 mushroom

mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts

Posted 30 March 2013 - 12:03 PM

I'm glad the Dapsone is giving you some relief. but sorry that your biopsy was done incorrectly.  Is there any chance you can print out information from the webon how to do it and go back and have it redone?  I ask this, because this is your best shot at diagnosis.  It is unfortunate that those with DH frequently do not test positive on either blood tests or intestinal biopsy because all their antibodies are concentrated in their skin tissue. :(

 

Incidentally, it's probably not the chlorine.  Heat always seem to drive any skin condition insane


  • 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 mamat78

mamat78

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 30 March 2013 - 12:18 PM

I'm glad the Dapsone is giving you some relief. but sorry that your biopsy was done incorrectly.  Is there any chance you can print out information from the webon how to do it and go back and have it redone?  I ask this, because this is your best shot at diagnosis.  It is unfortunate that those with DH frequently do not test positive on either blood tests or intestinal biopsy because all their antibodies are concentrated in their skin tissue. :(

 

Incidentally, it's probably not the chlorine.  Heat always seem to drive any skin condition insane

Yes, I think I will call on tuesday to reschedule an appointment for this week and ask her to redo the biopsy. By then, the blood screening should  be back as well. I am so close to just going gluten free to see if it makes a difference on my skin. So far today, I havent had any as I was feeling so blah yesterday. 


  • 0

#4 learning2cope

learning2cope

    Community Member

  • Advanced Members
  • PipPipPip
  • 54 posts

Posted 30 March 2013 - 03:12 PM

I need to get a skin biopsy. I'm going to make an appointment with my dermatologist. I'll call on Monday for one. Hopefully I can get in this coming week. I am really anxious to get this ball rolling. I haven't been diagnosed with celiac yet but I'm starting the process. I have DH (or what *I* think is DH) but is diagnosed as palmoplantar pustular psoriasis. So we'll see how it goes with the biopsy. I think at the time of the biopsy I will ask for a prescription for dapsone just to try it out to see if it really does help. Good luck with this! Hopefully we can beat this DH problem and live happily ever after! ;)


  • 0

#5 mamat78

mamat78

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 30 March 2013 - 05:42 PM

I need to get a skin biopsy. I'm going to make an appointment with my dermatologist. I'll call on Monday for one. Hopefully I can get in this coming week. I am really anxious to get this ball rolling. I haven't been diagnosed with celiac yet but I'm starting the process. I have DH (or what *I* think is DH) but is diagnosed as palmoplantar pustular psoriasis. So we'll see how it goes with the biopsy. I think at the time of the biopsy I will ask for a prescription for dapsone just to try it out to see if it really does help. Good luck with this! Hopefully we can beat this DH problem and live happily ever after! ;)

good luck! I am already very sure that the dapsone is working. I am getting lots of relief so far. I know its not a great drug but it has been good while I sort out the rest of my diagnosis. 

I asked earlier but if dapsone works, is that not enough evidence that it is responding to DH? 


  • 0

#6 pricklypear1971

pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts

Posted 30 March 2013 - 10:40 PM

I noticed swimming in chlorine pools made my rash hurt and burn...and the bathing suit rubbed in it, too.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#7 squirmingitch

squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,295 posts

Posted 01 April 2013 - 03:11 PM

I've never read that Dapsone screws up the skin biopsy for dh but I do wonder. Anyone here who has had a positive skin biopsy for dh while on Dapsone & still eating gluten?


  • 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 01 April 2013 - 07:13 PM

Hi there,

I am still anxiously waiting on the results of the blood screening I got 2 1/2 weeks ago now. I am really hoping they are back after the easter weekend. Anyways, I also realized that my doc took a DH test completely wrong so I will likely get a negative result back on that one. 

I was perscribed dapsone on Wednesday so I have taken 3 days worth (50 mg dose). Although I still have moments of itching (and then burning from itching), the need to sractch my legs off seems to have subsided. If Dapsone is working, can I assume that eventually, I will get a positive diagnosis for celiac? I am so tempted to just go off of gluten and self diagnose rather than wait for what seems like forever to get results back and then further testing. 

 

Yesterday was a big gluten day and by the end of it, I went to bed so bloated and uncomfortable feeling, I swore I would be going gluten free as of today. I keep reading though that I just need to hold on and wait for a diagnosis or at least the tests before I go for it. 

 

Also, people with DH, does cholorine aggrivate your skin? For years I have blamed chlorine for my outbreaks but what I found was that I could tolerate it a few times and then suddenly I would break out again (for a longggg period of time). I have always just blamed the hot tub for my skin but now I am thinking it has been coincidental although if I am ever broken out even just slightly, the hot water in the hot tub seems to aggIdrivate it quite a bit.

 

I don't think the pool chlorine affects my skin.  I know heat does cause me to itch more, even if I'm not in the sun.  

 

If Dapsone helps your rash, it probably is DH.  My doctor asked me to start eating gluten-free the day I started Dapsone, in Oct. 2012.  I was doing so much better and decided I'd try to wean off of the Dapsone . . . what a mistake!  I still had lesions but they were healing.  I am now wishing I had not stopped the Dapsone. . . . renewed breakout and going through all the itch, sting and burn again.  Whew . . .  I will stay on the Dapsone as long as I can and of course NO gluten.  

 

I'd say with eating gluten-free and your good result with Dapsone you will have a dx of DH.  


  • 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 mamat78

mamat78

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 01 April 2013 - 07:53 PM

I don't think the pool chlorine affects my skin.  I know heat does cause me to itch more, even if I'm not in the sun.  

 

If Dapsone helps your rash, it probably is DH.  My doctor asked me to start eating gluten-free the day I started Dapsone, in Oct. 2012.  I was doing so much better and decided I'd try to wean off of the Dapsone . . . what a mistake!  I still had lesions but they were healing.  I am now wishing I had not stopped the Dapsone. . . . renewed breakout and going through all the itch, sting and burn again.  Whew . . .  I will stay on the Dapsone as long as I can and of course NO gluten.  

 

I'd say with eating gluten-free and your good result with Dapsone you will have a dx of DH.  

I have to say that my rash is sooo much better already. It is not gone but it will be a while as I have had it since december so even when it settles down there will be dark red spots that will need to fade. The itching though is minimal (usually once or twice a day I get a small area that will be itchy but no bleeding for 2 days now which is huge improvement). I am staying gluten free until I get results from doc and if I have to go back on for further testing, I will. 


  • 0

#10 sisterlynr

sisterlynr

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 153 posts

Posted 01 April 2013 - 08:41 PM

I have to say that my rash is sooo much better already. It is not gone but it will be a while as I have had it since december so even when it settles down there will be dark red spots that will need to fade. The itching though is minimal (usually once or twice a day I get a small area that will be itchy but no bleeding for 2 days now which is huge improvement). I am staying gluten free until I get results from doc and if I have to go back on for further testing, I will. 

 

Good news!  


  • 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~


#11 mamat78

mamat78

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 06 April 2013 - 01:11 PM

FLared up again as soon as I ate bread...I did this incase I need a retest on tuesday when I go back to the dr. Within an hour, My entire body starts crawling but the breakouts are where I am already dealing with the rashes (both legs). I feel horrible and very little energy. REgardless of what the results are, I will be going gluten free as I feel like I alreay know my body is struggling with it. 


  • 0

#12 sisterlynr

sisterlynr

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 153 posts

Posted 23 April 2013 - 08:58 PM

I've never read that Dapsone screws up the skin biopsy for dh but I do wonder. Anyone here who has had a positive skin biopsy for dh while on Dapsone & still eating gluten?

 

I was gluten free for 4 months and taking Dapsone.  The Dermatologist told me DH would  not show up in the biopsies.  I talked with him just last week and they did not show DH.  He said that inflammation/infection was present and these biopsies were peri lesion with the light.  This Derm was tops!  He wanted to biopsy since I was there and to see if possibly there was something else causing the rash.  I need a new ANA test and then I will be scheduled for light therapy to help with the healing process.  

I would like to know if anyone has had a positive biopsy while on Dapsone and gluten-free.  


  • 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~


#13 mamat78

mamat78

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 25 April 2013 - 08:14 PM

So with Dapsone, it will not likely show a positive biopsy? I am actually only putting it on the worst areas and leaving it without anything on the other areas in fear of exactly that! I am not gluten free at this point. 

 

My appointment is still a week and a half a way...seems like forever! 


  • 0

#14 squirmingitch

squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,295 posts

Posted 26 April 2013 - 04:58 AM

I don't know mamat --- she said she was gluten-free for 4 months --- that alone is enough to make the biopsy negative so we don't know about the effect Dapsone may or may not have on dh biopsies.


  • 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.

 



0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: