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Light Sensitivity


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9 replies to this topic

#1 jennifer.maffei

 
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Posted 13 March 2013 - 01:37 PM

I've done a lot of research for my husband who has undiagnosed DH. He's had it for the past 20 years but has been misdiagnosed and seems like the photos in the DH photo bank match perfectly. Anywho, I wanted to ask a question on his behalf as I have not seen this topic (although I have read many posts but not all).

 

Does exposure to sunlight, wearing sleeveless shirts, worsen the blisters or itchiness?

My husband says whenever he is in direct sunlight for too long he starts itching more, blisters appear or become more raised, etc.

 

Your input is greatly appreciated. Thanks!

-Jennifer


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#2 GFreeMO

 
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Posted 13 March 2013 - 02:26 PM

For me not at all.  Sometimes getting sweaty makes my dh itch more.  What you are talking about sounds like the rash that people get from Lupus.  That is very light sensitive.


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#3 squirmingitch

 
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Posted 13 March 2013 - 04:02 PM

Some have said the sun makes their dh go crazy. Some have not. Personally, I have not found that to be the case however, I have limited my sun exposure to very short periods of time. I WILL say though that HEAT makes my dh go crazy. What do you get in your skin when you're in the sun? HEAT. It heats up your skin. So which came first the chicken or the egg? The sun or the heat?   ???????


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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.

 


#4 sisterlynr

 
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Posted 13 March 2013 - 11:04 PM

If the pool water is cool I don't seem to have a problem with being in the sun.  I have had horrible break outs on my scalp after a day at the beach and not being in the water.  Maybe it is the heat . . . I have to agree with Squirmy, sun or the heat ? ? ?

 

I was majorly broken out this past summer and had to keep the car and house cool or the itch was unreal.  I am on Dapsone now and have a script for Traimcinolone Acetonide Cream, USP which helps.  Not had the horrendous itch since the end of October.  


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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~


#5 jlaw

 
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Posted 14 March 2013 - 12:04 AM

heat, humidity and sweat...absolutely make the itch worse. I mean if you're sweating, the salt goes into any open lesions, you're automatically itching and stinging! Here in India, the heat and humidity are huge factors, over 100 for most of the year, and not much less than that at night. In fact, we're planning on going back home to Aus for the hot season, partly because that's how bad it makes my skin. But more than the sun, I would say it's humidity.


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DH dx by skin biopsy July 2012

#6 squirmingitch

 
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Posted 14 March 2013 - 02:55 AM

I agree with the humidity factor too. My hubs & I have both noticed that dampness in the air makes us itch more. Even when it's not that hot but say on a day when it's raining & the humidity is on upwards of 80 & 90% --- makes me itch like gonzo! But in the summer --- OY! I live in Fl. where humidity is king & it really makes a difference when it's both hot AND humid.


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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.

 


#7 jennifer.maffei

 
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Posted 19 March 2013 - 04:49 PM

Thank you so much for everyones views on this. Whether it is heat or sunlight like you all are mentioning does have us wondering but alas, does it matter?

Heat or sun is pretty much the effector of his bumps becoming raised more in the summer. It's nice to see, although unfortunate for everyone to experience, the same sort of situation though. It has driven him nuts the past couple summers and he always asks the same question...is this caused by summer sun/heat? Now I can give him an answer. :-)


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#8 GottaSki

 
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Posted 19 March 2013 - 05:40 PM

Just saw this thread.

 

While I have never had blisters....I get severe itchy-red patches when I get glutened..I also have had severe heat/exercise intolerance "allergy" my entire life which has gotten worse each decade (red rash - severe blushing - breathing issues).  Removing gluten did not resolve this.  Removing high histamine and histamine inducing foods has finally improved my reaction to heat, exercise and direct sunlight (photo-sensitivity).

 

Thought you might like to read this simple explanation of histamine intolerance:

 

http://www.allergyuk...Intolerance.pdf

 

 

PS...welcome to the forum :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 kmag

 
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Posted 21 March 2013 - 05:39 AM

Yes, I definitely get a pronounced reaction to sun exposure.  Before I ever even had DH, I would get a rash from the sun that was nearly identical to my DH rash.  I always thought it was some sort of allergy, and I'm still not sure if it even ties into DH in any way.  It's just interesting.  I've been tested for Lupus and I don't have it.


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#10 learning2cope

 
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Posted 30 March 2013 - 03:42 PM

I grew up with (and still am affected by) polymorphous light eruption (aka sun poisoning) which is a mass of hives on the sunlight exposed (or UV exposed skin). Mine starts showing up about 5 minutes in the sun if I don't have sunscreen on. The sting is super intense (similar to DH) and it itches like heck!! BUT when you even gently scratch it it hurts so badly!! I know my sun poisoning rash does not look like most others rash from waht I've seen online, I have seen little blistery pimple-like rash that is supposely sun poisoning. Mine are huge melted together hives (if it's bad enough). I am 28 years old (almost 29) and I've had it my entire life. My mom had it and her mom had it. It's apparently hereditary. Though apparently it goes away with advancing age. Mine hasn't gotten better over the years so I'm not sure if I'll ever be rid of it.

 

I'd google polymorphous light eruption and see if it matches what you are seeing. I don't know yet if it's in any way related to celiac, though I wouldn't be surprised if it were.


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