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DH Photo Bank


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#46 sisterlynr

 
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Posted 23 November 2012 - 11:06 AM

Oh you poor, poor thing!!!!! You've got it BAD don't you? Well, I don't know really anything about the dosing of Dapsone but I would say maybe you need to talk to your doc about upping the dosage. Now, upping the dosage will not make the places heal any faster. This stuff takes it's own sweet time healing & it is vexing in the extreme. So Dapsone will not help with that. But the Dapsone is supposed to stop any new outbreaks as well as stop the itch, sting, burn. After a whole month on Dapsone; still having the itch etc.... I would say it's time to talk to the doc.
And I've said this before but it bears repeating ---- when you're on Dapsone it masks dh reactions so you have no gauge as to getting glutened or cross contaminated so you need to be ​ extremely careful that you are not getting the slightest trace of gluten. Just a reminder. :)



Yes, I have it bad. I see a new dermatologist from University S Florida on Dec 6th. I see my PCP this coming Tues. I really am healing. :) The ones from my wrist to elbow have healed and just have dark spots, no itch. From my elbow to shoulder is trying to heal but I keep taking off the scabs. Not really itching there but feel the dryness. The lesions on both knees have healed just leaving discoloration. The sole of my right foot has healed completely. I guess just the stomach, back, buttocks, chest and scalp still have sensations. Like sitting here, I am aware that my skin feels tight and I could scratch my belly BUT I can control the urge. Dapsone has not taken that away completely with 2 a day = 50. It is so hard not to pick at my scalp :( the skin is really rough with scabs. I see such great improvement. Thankful for that!

My family keeps reminding me how much better I am. They have been so patient with me during the past 10 months, helping me apply the ointments to my back.

I've decided to eat at home unless there is a special occasion so I can know for sure, what I am eating. Thank you so much for your advice and response. :)
  • 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~


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#47 squirmingitch

 
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Posted 23 November 2012 - 05:03 PM

FWIW I have only eaten out once since going gluten-free & that was before my hubs found out he had it TOO. We went to Chinese & I brought my own food, a sandwich, I ordered wine & an iced tea to drink with my sandwich. They had no problem with it & I told them in advance what I was going to do. To me, it's just not worth taking the risk. It is so easy to get cross contamination in a restaurant situation.

It is wonderful that you have such a supportive family!!!!
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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.

 


#48 ampmomof3

 
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Posted 07 December 2012 - 08:55 AM

This rash only went away when I put my son on a gluten free diet.....could it be DH? He is 10 years old. His twin brother had no rashes until we reintroduced gluten in July....his rash started also behind his ear and went away when we went back on the gluten-free diet. After a vacation in Oct.2012 we again ate gluten and there were no signs of the rashes....so we continued to eat gluten until the week after Thanksgiving because the rashes were slowly reappearing and also #2 twin was starting to blink his eyes constantley....these are hard blinks and he does this all day. It also occurred last year before starting gluten free and I had not thought about or noticed it again untill a few weeks ago during out gluten feast... Now all three of my kids have small red bumps on their hands and arms....there are only 3 or so in each area on each child?? I'm so confused.....
I posted a full story on another topic....

http://s1322.beta.ph...616105665253381


Thanks and any opinions are welcome!
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#49 squirmingitch

 
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Posted 07 December 2012 - 10:09 AM

This rash only went away when I put my son on a gluten free diet.....could it be DH? He is 10 years old. His twin brother had no rashes until we reintroduced gluten in July....his rash started also behind his ear and went away when we went back on the gluten-free diet. After a vacation in Oct.2012 we again ate gluten and there were no signs of the rashes....so we continued to eat gluten until the week after Thanksgiving because the rashes were slowly reappearing and also #2 twin was starting to blink his eyes constantley....these are hard blinks and he does this all day. It also occurred last year before starting gluten free and I had not thought about or noticed it again untill a few weeks ago during out gluten feast... Now all three of my kids have small red bumps on their hands and arms....there are only 3 or so in each area on each child?? I'm so confused.....
I posted a full story on another topic....

http://s1322.beta.ph...616105665253381


Thanks and any opinions are welcome!


This is the thread ampmomof3 spoke about. I will reply there since the bulk of the information is there.
http://www.celiac.co...ac/#entry841483
  • 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.

 


#50 tealiemonster

 
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Posted 28 December 2012 - 07:01 PM

Initial skin biopsy (punch): eczema negative, puritic vesicle observed
Immunoflorescence IgA skin biopsy (punch): Weak Postive
Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive
Small Intestine biopsy (EGD): negative

(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)

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Skin Scraping for microscopic analysis - negative for scabies 9/24/2012
Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012
Prednisone 10mg 2x daily - no improvement 11/09/2012
Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012
Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012
Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012
Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)
Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012
Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012
Gluten Free 12/28/2012

#51 moneek

 
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Posted 29 December 2012 - 02:54 PM

I am dx'd since October 2012 with DH via skin biopsy, and gluten free since mid-October {don't even ask about Sandy's impact on my crazy life} .... {we lost our home}

I am uncertain if I can post any photos, since I'm new to this forum.

I was initially treated in September with prednisone for 3 weeks, which mostly cleared the rash; it quickly rebounded, though, when the prednisone was stopped. I have a very painful, sometimes itchy, mostly very painful rash on both elbows, both hips, upper thighs [front and rear], and buttocks, plus some minor spots along my arms and my hairline. The rash is always symmetrical and, like I stated, very painful. I believe the underlying antibodies attack nerve cells, thus the pain, and for others the severe itch.

I am finally in good hands, medically speaking, at a university clinic where the latest cutting edge science is being studied; I am actually a part of the study there, as the MDs don't see too many cases of DH.

Dapsone may be in my near future if the rash persists.

Edited by moneek, 29 December 2012 - 06:02 PM.

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- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#52 squirmingitch

 
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Posted 29 December 2012 - 05:21 PM

Welcome to the board moneek! And to the club none of us ever wanted to be members of. :o Tealiemonster is new here too. If you read the threads she has posted on then it will help you to learn.

I am so sorry to hear you lost your home to Sandy. I come from hurricane territory myself having lived most of my life in southeastern coastal Fl. so i know full well what you are going through. It's rougher than rough. :unsure:

Keep us posted on the research please. I believe you are right on the underlying antibodies attacking nerve cells. My hubs & I have discussed this often.

You are allowed to post photos. If you can figure out how to! :lol: :lol: :lol:

The best thing any newbie can do here is to read as much as you can of the forums & threads --- not just this dh forum --- you will learn fast that way.
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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.

 


#53 moneek

 
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Posted 29 December 2012 - 06:00 PM

I was able to post my photos to photobucket .... unfortunately, they are in reverse order, the first ones, the majority of the pix, are from December 2012; the last ones are of the initial manifestation of the rash back in July 2012, plus a few in between from November, when I actually thought I was getting a bit better. take a look:

http://s1272.beta.ph...lamb/library/DH

My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.

I use no cosmetics at all, with the exception of gluten-free lipstick (Gabriel's), I lubricate the rash with a combination of pure coconut oil and borage oil lotion (shikai children's lotion, gluten-free, per the manufacturer: http://pics1.ds-stat...g/75483/300.jpg )

I'm also avoiding the majority of gluten-free food products out there - they are loaded with corn and tapioca and lots of ingredients that I have never heard of. I am eating mostly whole foods, fruits, veggies, meats, chicken, etc.

Best of luck to everyone.
M
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- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#54 sisterlynr

 
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Posted 01 January 2013 - 12:56 AM

I only eat at home as well after getting cross-contaminated twice (I think so, anyway); it's difficult socially as most folks just don't really understand. They think, just a little bread, just one cookie, or whatever. I find it's easier to just be a bit isolated at the moment until I feel stronger.

.... m


When we go out to have dinner, I ask for their allergy menu. Red Lobster cleaned a grill for me, wore gloves and prepared salmon along with a salad. I had to wait a little longer than usual but it was worth it to know I wouldn't be cc'd. I don't even try to eat at the fast food place anymore. :rolleyes:
  • 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~


#55 squirmingitch

 
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Posted 01 January 2013 - 05:23 AM

can you please clarify?
we posted photos and are comparing notes; why is there an issue with that?


Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.
Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:
http://www.celiac.co...-skin-shedding/
  • 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.

 


#56 moneek

 
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Posted 04 January 2013 - 04:02 AM

Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.
Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:
http://www.celiac.co...-skin-shedding/


thanks for squashing the conversation and alienating other memebers. (not)
I am leaving this forum, for just this reason.
I have ideas to contribute, things to discuss, photos to share, but with the obnoxious attitude that prevails here, I am not able to bear more stress.
  • 0
- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#57 squirmingitch

 
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Posted 04 January 2013 - 10:53 AM

I'm really sorry you feel that way. The conversation didn't get squashed; it got moved ---- to here:
http://www.celiac.co...one-and-others/

and it takes a moderator to move it. I am not a moderator.

You DO have ideas to contribute, things to discuss, photos to share & I hope you will reconsider your decision. No one said you could not do all those things. They just need to have some kind of order & not be willy nilly or no one will ever benefit from your ideas, discussions & photos.

I KNOW you are under a lot of stress; not only from dh & celiac but also from losing your home to Sandy. I REALLY DO KNOW THAT KIND OF STRESS --- been there, done that. I also suspect you are going through gluten withdrawals which can make us further stressed, angry, disoriented, confused & tend to take things personally & become irrational. Again, been there, done that. I feel so much for you hon. Honestly & from the bottom of my heart I mean that. ALL that you have been through has given you major overload.

I hope you will re-consider & stay with us. As I said before; I was enjoying the discussion & I meant that.

At any rate I send you monster hugs ((((Moneek)))) & though you may not believe it those hugs are sincere. I think you need some hugs & maybe a shoulder to cry on. We are here for you whenever.
  • 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.

 


#58 SPJ&E

 
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Posted 10 January 2013 - 11:37 AM

My son is not "officially" diagnosed, as we've decided to hold off on testing until he's older. My son had silent reflux and cried constantly (and I would bet part of that was itching and not being able to scratch). He had weight loss/failure to gain issues for months. He finally made it back onto the chart at 9 months and stayed in the 3rd percentile until 15 months, where he made it all the way to the 7th percentile. He's still smallish, but he's growing consistently finally.

He had a rash almost from birth. Steroid cream made it go away, but it would come back worse. We figured out very early on (2 weeks) that he had problems with dairy...couldn't even do hypo-allergenic formula (Nutramigen, which is still milk based, though very broken down). The rash got a bit better when we switched to Neocate (dairy free) and then he started getting oatmeal and it was worse again. Once we made him 100% dairy and gluten free, the rash went away. The only time it comes back now is if he gets glutened or "dairied". Even then, it hasn't been nearly as bad as it was for months. It still itches him really bad though and he digs at it constantly (it's the worst on his legs). He does gets some random spots here and there, which I believe is because we've brought small amounts of gluten into the house again lately (bread, for brothers' sandwiches, and crackers for their snacks). So the house is going gluten free again and if that doesn't do the trick, we're going to change salt and try to start limiting iodine. Anyway, if you made it through all that (I suck at narrowing things down and wanted to make sure I gave all the necessary info), here are some pictures from when he was almost 5 months old and it was pretty much at it's worst...

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Getting Better (fading)
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#59 anonymous_123

 
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Posted 12 January 2013 - 05:06 PM

holy crap.....i have a rash on the inner part of my arm by my elbow that are small red dots that just appeared a couple days ago and got a little worse today. i have not been diagnosed with celiacs or been tested yet, but b/c of bloating and hive breakouts, I decided to go on a soup/salad diet, which contains salt (Iodide). My bloating went away. I've been doing the soup/salad thing and eating organic blue corn chips and salted rice cakes and fruits for about a week and a half. could this be the cause of my rash??!!
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#60 sisterlynr

 
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Posted 12 January 2013 - 09:00 PM

Deleted pictures and my response per the request of SPJ&E
  • 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~





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