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dani nero

DH Photo Bank

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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:


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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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:


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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.


- 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

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I'm really sorry you feel that way. The conversation didn't get squashed; it got moved ---- to here:

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.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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...

Embry136-1.jpg

EmbryRash003.jpg

EmbryRash004.jpg

EmbryRash012.jpg

Getting Better (fading)

EmbryRash016.jpg

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


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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The tough part is finding a doctor anywhere near our area. We live in a small town and it's not easy. We drive 1.5 hrs. (1 way) to see a good pediatrician and the specialists are a good bit further (one is a 3 hr. drive one way). We would be more than willing to put him on gluten for a time, in order to do a biopsy if we could actually find a doctor within a reasonable distance that is worth anything. We took him to his ped numerous times for this rash...she was stumped. She referred him to a local dermatologist, who basically said he had no idea...to try this steroid cream on it (that his office didn't even call in like they were supposed to). He was just...dumb, to put it nicely and it was a total waste of time (and that wasn't the only issue we had with that office).

So yes, we would love to have an official diagnosis, but that's easier said than done. Our older son's GI recommended bloodwork, but I know how unreliable the bloodwork is, especially for young kids. We are not willing to put him through blood testing at this point when keeping him gluten and dairy free keeps the rash away. A biopsy we would be totally fine with. I think the derm we seen just turned us off of trying to find another, so we have kept him gluten free and he's been fine. He started gaining weight finally and we just left it alone...stuck with it and haven't worried about getting anything "official".

If you don't mind, would you please remove my pictures from what you quoted? Please know that I don't request that to be "snarky" or "rude" in any way. I just may want to remove them from online at some point and won't be able to take them out of someone else's post. Thanks!

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On 6/23/2012 at 10:44 AM, squirmingitch said:

These first 4 are from Sept. 2011 when I was on the verge of discovering this was dh.

 This 1 shows the clear amber fluid. The blisters were coming up so fast & bursting all by themselves.

The following ones are after 6 months gluten free & several months low salicylate & not a lot of iodine but I had been doing so well that I couldn't resist eating 4 tsp. of strawberry banana yogurt & during the night I woke itchin like mad & my neck all broken out in dh. Then other places began to break out again.

Other leg. Scars will fade away after about 5 months.

I have been adamant NOT to scratch! None of the lesions or scars are the result of scratching them. It's bad enough w/o making bad scars from scratching them. I will scratch around them but never on them. I will rub on them and press on them.

The only place I have not had them yet was on the soles of my feet. I get them horribly in my scalp & they tend to be very large there --- the size of a quarter. They look different than these photos but there is no way to seperate the hair well enough to get a good clear photo. In the scalp they generally take 6 weeks to heal. All others run a course of 2 to 4/5 weeks depending on if I was gluten free or got cc'd (only once) & if I got too much iodine or salicylates.

Oh my goodnees, I am so thankful you posted this. That is exactly how mine looked before I went gluten-free. I struggled with DH for so long before I finally went gluten-free and saw results. I was misdiagnosed several times by multiple doctors and I wish I would have seen this forum months ago! Do you notice any flare ups from Chlorine or Tylenol? I got in a chlorine pool this summer and had a terrible flare up. I even had to get a chlorine filter on my shower head. Lately, I have been taking Tylenol PM and am experiencing a flare up. That's the only thing I can really think of that would cause a flare up. Have you experienced exacerbations from Tylenol?

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On 7/1/2012 at 11:46 PM, dani nero said:

This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

Dani! This is exactly how my fingers looked!!! I dont get it anywhere else on my body but I do get eczema on the back of my neck (who knows, it could be DH), but I get those itchy, red bumps on my fingers, but they dont really look like they are filled with anything. They're definitely raised, but I dont see any puss or fluid in them. It hurts when I wash dishes (my mom thinks I'm just trying to get out of it lol) Could it be DH?

Since I'm a nursing student and need to work with people in the hospital, I went to the doctor because I didnt want the patients to see my hands and get all freaked out - plus, I didnt want any of their germs getting into open cracks in my skin!! He didnt even know what DH was - looked up some pics on google and said it was eczema on my fingers, gave me some cream, and sent me on my way. The cream mildly helped but it came back so I just gave it to someone who actually had eczema.

I havent had any gluten accidents in a while, and the bumps went away. After seeing your pic I think I may have DH, but dont want to jump to conclusions because its nowhere else on my body...your thoughts?? :)


"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy

Acid reflux/GERD (stopped since eating gluten-free)

Syncope

Raynaud's Syndrome

Iron Deficient

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Hi all,

I'm adding more pictures now that my rash has developed some consistency. I get it on my upper back/shoulders, buttocks (not amused :ph34r: ), stomach, jaw line and hairline. Some more recent-ish photos - the rash hasn't changed much - varies in severity (these pics are medium severity). Still not dx'd but Celiac is suspected (I think?).

http://cl.ly/image/190q3e3m1A09

http://cl.ly/image/2j1M2s2E2l2b

http://cl.ly/image/2y2A0N160h29

http://cl.ly/image/1i1o1B2D1J0H

http://cl.ly/image/3j1K3i2C412g - I always always always get this "lesion" in the same spot every time I get glutened or iodined - so strange.

Still obscenely itchy, stings, doesn't like hot weather or water, etc.

Hope this helps someone! :-)

Laura


Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 

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DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Since dh can flare at any time until all the antibodies are out of our skin, I thought it would be good to show such as well as the progression of it as it ravages the skin. I have been absolutely strict gluten-free since Dec. of 2011. We have a gluten-free household & eat 99% whole foods. Have not eaten out at all. My dh had improved greatly upon going gluten-free & even though I still had some dh; it was nothing like what began in Sept. of 2012. I have been mostly low iodine since going gluten-free since I have found iodine to make my dh flare.

In the beginning of Sept. 2012, I began to have a spontaneous flare of dh. When it began I had no idea it would continue flaring to this day & so severely.

These first 2 photos were taken on Oct. 12, 2012.

8396010613_0c60092033_z.jpg

8397101136_3c897d5c14_z.jpg

These next photos were taken on 1/13/13.

8397122688_fd540a236c_z.jpg

8396040891_f157ab80c7_z.jpg

8397124830_53a176428e_z.jpg

8396042507_5c60904ecd_z.jpg

8396043099_5c3684216d_z.jpg

8396043589_3b2901e657_z.jpg

8396044249_cc6276d95c_z.jpg

Above shows what I call the flesh eating lesions. It starts as a tiny little water blister & I don't scratch --- it just eats away at the flesh & gets bigger & bigger & bigger. You will see more photos of this same area in the next date series. You will see what it turns into from this point.

8396045721_bd281402f6.jpg

Apparently I can only post a certain # of photos on one post so I will have to make another post to put the rest of the photos on.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Photos taken on 1/19/13.

8397268918_25a514e824_z.jpg

Above is the flesh eating lesions you saw earlier.

8397268656_f95f1f68df.jpg

Below is the underside of my breast.

8397268718_b204fa28b6.jpg

Lesions on my front:

8397266446_ab21f97c3b.jpg

My left side up to armpit area:

8396184979_1c4d183076_z.jpg

The flesh eaters:

8397257702_f115b8f4b5.jpg

8396184957_ea5c25aef1.jpg

My scalp has been ravaged more than anything you see here.

Clothing is sheer torture to wear.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Ditto to Squirming's pics. Mine looks EXACTLY like yours.

I am sorry you both have to suffer like that; it looks incredibly painful and uncomfortable. :(


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

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Thanks Shroomie. It does suck.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thanks squirmingitch.

I am sure a friend has dh from your pictures. I will show him in a couple of weeks when I next see him. He had negative blood test, but had been gluten-free beforehand. Great thread, thanks.


- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!

- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol

- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.

- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.

- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)

- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.

It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein hidsmile2t.gif

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Thanks Shroomie. It does suck.

Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . . :(


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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Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . . :(

Thanks dear. I doubt a GI has any clue about light therapy. And yes, sometimes you get the flesh eaters where you get 2 or 3 next to each other & then they all grow together to make one huge lesion.

Maybe the topical Dapsone..... I don't know. Just have to talk to him & see.

My other worry is that if I go the Tetracycline route that I am deathly allergic to Penicillin & what if I develop an intolerance to tetracycline? If I get really sick & need it then I won't have any options left to me.

There are time that .38 is looking better & better.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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There are time that .38 is looking better & better.

Hope we're talking about a bigger bra here :D


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

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There are time that .38 is looking better & better.

Oh Squirmingitch ... put those thoughts way out of your mind! The topical Dapsone is ACZONE® and you may want to research to see if your doctor will prescribe it for you.

When I asked for Dapsone, I mentioned the topical to my PCP and she didn't seem to recognize the name. Since she agreed to order Dapsone, I didn't press her further about the topical med.

Your GI may not be familiar with light therapy but I know the Derms do. Hang in there! Prayers and ((hugs)) to you.


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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