DH Photo Bank

[curryADD]

On 2/4/2020 at 3:41 PM, Moosebrew said:

I have finally found relief from awful scalp sores and wild crazy burning skin by eliminating gluten FROM EVERYTHING I use or eat!! I just wanna say one thing that is irritating me! I read constant forums where people are like what are you doing eating the shampoo??? Well good grief when you have exposed painful sores on your scalp and body its kinda obvious the gluten is being absorbed!!!!! I have been through a lot of tiring dr visits and mean comments about how Im picking my scalp and doing this to myself! I have to take it one day at a time and pray I dont consume gluten or iodine on accident. 

I'm with you here. I first had DH last year - I saw my GP who was, "pretty sure" it was DH. (I had never heard of DH before but have been diagnosed celiac and gluten free for about eight years) but wanted me to see a dermatologist to be officially diagnosed with it.

My boyfriend is also a doctor, and after seeing my multi-week distress and seeking an alternative explanation to my own hypothesis of a novel allergy (he thought this was a very silly idea), began to do some research on celiac disease and came to the conclusion it was DH independently from my general physician. I didn't see a dermatologist because I don't have time to be bouncing around multiple doctors if the third is only going to tell me, "Be more careful than you thought you needed to be in terms of cross contamination" like my boyfriend and GP. 

I went through all my products and found that my Elemis facial products ALL had wheat gluten in them. WHAT?!?! I was putting that s**t on my FACE! 

Anyway, I now also have my own kitchen counter as a designated gluten free space in my home. Occasionally, when I eat a lot of grains (which all have their own special form of gluten - there are studies that show celiacs having immune reactions to corn, quinoa, and rice  ), I start getting itchy in my DH spots (under my armpits). There is like a gluten itchy tingle I can feel under my skin just bursting to erupt. Since I had my first outbreak, I've had two additional, which were less severe. 

I treat them with cold-pressed Thyme Juice called, "Thyme Out", and Dr. Bronner's magic menthol rub. When it's really bad, I also take benedryl to help me sleep. 

 

Edited March 30, 2020 by curryADD

[JenniK]

On 2/4/2020 at 4:41 PM, Moosebrew said:

I have finally found relief from awful scalp sores and wild crazy burning skin by eliminating gluten FROM EVERYTHING I use or eat!! I just wanna say one thing that is irritating me! I read constant forums where people are like what are you doing eating the shampoo??? Well good grief when you have exposed painful sores on your scalp and body its kinda obvious the gluten is being absorbed!!!!! I have been through a lot of tiring dr visits and mean comments about how Im picking my scalp and doing this to myself! I have to take it one day at a time and pray I dont consume gluten or iodine on accident. 

I Did go to a “well respected” derrmatologist when i had a huge outbreak of what looks exactly like DH a few years ago. My whole back was covered for probably a year or more, no matter what i did. I actually thought i had a staph infection. My GP was concerned enough to send me to a derm, bc she thought the derm would know better than her. 
 

The derm sent the nurse in first to take info, came in with her decision made, never touch my skin anywhere on my body and was out the door in 30 seconds. She said “you have all these bumps because you scratch and rub them.” I said, “well, they were there FIRST. I wouldnt scratch or rub something (under my bra ) unless there were something THERE.” She just dismissed that, prescribed some creme and left. Never offered to culture or biopsy, never asked about possible food or cosmetic allergies, certainly never mentioned celiac. The cream never did one thing to help even though i put it on like clock work for months.

After maybe another year or two, because of my chronic diarrhea and suspected rheumatoid arthritis, i went gluten-free. Guess what happened? The bumps that had been there for years disappeared (except that I am still scarred from them). Stayed completely gone for 2 years that I was gluten-free until I recently did a gluten challenge. Now has come back but is not full blown yet. I showed the GI yesterday, who agrees that is looks like DH, even though he said that a dermatologist would be more sure.

well, not the dermatologist i went to. Of all the doctors who missed  signs over the years, the only one I feel let me down is that dermatologist. She could have saved me YEARS of struggle and health issues if only she had not been so arrogant and had known her own specialty. 

[Scott Adams]

It's frustrating that you endured extra years suffering, which some simple tests could have been done years ago to figure this out.

Your story reinforces the idea that the only person who will truly look after your health is yourself, and not necessarily doctors. They are often too busy to really focus on you, or are missing the symptoms and key knowledge that is necessary to deal with the issues.

[morganastar]

I know it's only the teeniest of photos, but what are people's thoughts!? Not the greatest photo...not an easy angle to get 😳 the butt/hip area! Only just saw it today in week 6 of my gluten challenge ( D, C, nausea, tiredness, horrible aches, shivers and wobbly, physically throwing up, just feeling like been hit by a truck) only saw this rash today when I was itching it tbh..kinda stingy and think I've popped a few blister bits  😖 blood test on Tuesday and speaking to Dr after...Just ate pizza so wish me luck!

[Scott Adams]

It looks like it could be DH, so be sure to tell your doctor. They may want to have a dermatologist biopsy it for DH.

[morganastar]

On 4/17/2021 at 11:35 PM, Scott Adams said:

It looks like it could be DH, so be sure to tell your doctor. They may want to have a dermatologist biopsy it for DH.

Thanks for this! I mentioned it to my gp after I had my coeliac blood test, and she diagnosed it as shingles!! This actually makes a lot of sense, as I've never felt this Ill in my life!! When the rash arrived I started getting really bad (what I thought was  sciatica) and hyper sensitive skin down my side,along with a temperature and arrhythmia over 120bpm!! The Dr has given me the go ahead to go on a low to no gluten diet until my bloods come back in the next few days (doesn't want me to stop completely in case more tests needed I guess) but she said it was very lucky I mentioned the rash to get me started on antivirals now, as  with these symptoms it could have been serious (and I wouldn't have thought it would be shingles as I've only just turned 30!) so thank you Scott for suggesting mentioning it!!

[Foggyat52]

I'm newly diagnosed with Celiac disease, so I'm just beginning to learn what to avoid, but do you mean to tell me that my head and neck rash could be caused by shampoos and other cosmetics!!!!!  Good grief, I thought all I had to do was go on a gluten-free diet and I would be fine!  HAHA!  It's a wonderful world!

[JenniK]

2 hours ago, Foggyat52 said:

I'm newly diagnosed with Celiac disease, so I'm just beginning to learn what to avoid, but do you mean to tell me that my head and neck rash could be caused by shampoos and other cosmetics!!!!!  Good grief, I thought all I had to do was go on a gluten-free diet and I would be fine!  HAHA!  It's a wonderful world!

It definitely could be caused by celiac. It could be in cosmetics, shampoo, etc, or it could just be caused by the gluten you’ve been eating. Since DH can have a delayed onset and delayed clearing up after one stops eating gluten, it can be hard to tell at first. Since you just started gluten-free, maybe do a good look into  your toiletry products, but don’t throw everything out just yet. Give some time for body to heal from the inside and see if that helps. However, if you notice big increase in itching or dandruff after a certain product, that is definitely a good sign to quit it. 
 

i have two different issues with skin and gluten. One is the DH, which took a long time to begin, stuck  around for years, nothing could change it until i learned about gluten. Then it took  a few months to go away after i went gluten-free, stayed completely gone until i tried a gluten challenge years later, came back in exactly the same place. So, definitely DH. The other is a flaky eczema like spot beside my nose which seems to flare up and down inexplicably. 

[Foggyat52]

1 hour ago, JenniK said:

It definitely could be caused by celiac. It could be in cosmetics, shampoo, etc, or it could just be caused by the gluten you’ve been eating. Since DH can have a delayed onset and delayed clearing up after one stops eating gluten, it can be hard to tell at first. Since you just started gluten-free, maybe do a good look into  your toiletry products, but don’t throw everything out just yet. Give some time for body to heal from the inside and see if that helps. However, if you notice big increase in itching or dandruff after a certain product, that is definitely a good sign to quit it. 
 

i have two different issues with skin and gluten. One is the DH, which took a long time to begin, stuck  around for years, nothing could change it until i learned about gluten. Then it took  a few months to go away after i went gluten-free, stayed completely gone until i tried a gluten challenge years later, came back in exactly the same place. So, definitely DH. The other is a flaky eczema like spot beside my nose which seems to flare up and down inexplicably. 

Thanks Jennik!!!  I appreciate the good advice.

[europyia]

My dh rash only came out once. But since, that area will itch if I'm slightly glutened. Praying it never comes back! It was only about the size of a quarter and kept me up all night! I can't imagine living with it all over. 

Back in the day, they called it " the suicide rash" because people would be so miserable,  they'd end their lives. This was before they knew what it was. I had a dermatologist think mine was from a spider bite before I was diagnosed with dh. 

We need to go back to these doctors and correct them! So they can begin to understand, diagnose and treat patients correctly.

Not sure how i can attach my photos???

[trents]

3 hours ago, europyia said:

Not sure how i can attach my photos???

Click on the three dots in the upper right corner of the post window. Click on edit from the menu. Then click on the paperclip at the bottom. After that you would need to create a new post.

[europyia]

9 hours ago, trents said:

Click on the three dots in the upper right corner of the post window. Click on edit from the menu. Then click on the paperclip at the bottom. After that you would need to create a new post.

Thanks! Love your profile pic😇

[trents]

Thanks for your comment about my profile pic.

You have brief amount of time to add a pic or otherwise edit a post before having to create a new post to accommodate the change.

Edited April 8, 2022 by trents

[bookmuse]

On 4/7/2022 at 7:53 AM, europyia said:

My dh rash only came out once. But since, that area will itch if I'm slightly glutened. Praying it never comes back! It was only about the size of a quarter and kept me up all night! I can't imagine living with it all over. 

Back in the day, they called it " the suicide rash" because people would be so miserable,  they'd end their lives. This was before they knew what it was. I had a dermatologist think mine was from a spider bite before I was diagnosed with dh. 

We need to go back to these doctors and correct them! So they can begin to understand, diagnose and treat patients correctly.

Not sure how i can attach my photos???

Yes, sounds familiar! My old dermatologist took a biopsy right on top of the lesion (incorrect method) and then told me I probably had flea bites. I have a new dermatologist who understands the correct way to do the skin biopsy but I haven't had the courage to eat more gluten to give him something to biopsy yet! 

[Scott Adams]

Once you know that there is a connection, it may not make sense to get an official diagnosis. DH is horrible and an outbreak can last for weeks.

[Leeger]

I was diagnosed with celiac, thyroid disease and bullous pemphigoid.  I have not seen bp mentioned and I wonder if anyone else has this.  If so, how are you treating it?

 

 

[trents]

19 minutes ago, Leeger said:

bullous pemphigoid

Were you ever biopsied specifically looking for DH?

[Bigdogtimo]

45 minutes ago, Leeger said:

I was diagnosed with celiac, thyroid disease and bullous pemphigoid.  I have not seen bp mentioned and I wonder if anyone else has this.  If so, how are you treating it?

 

 

I was misdiagnosed with Bullous Pemphigoid when in fact it was DH. I suffered for over 6 years with horrible blisters on my arms, legs and buttocks. I took Minocycline for 6 years with no relief. After switching doctors for the third time I found one who recognized DH immediately. Three days of dapsone and gluten-free diet and the blisters I had lived with were disappearing before my eyes.
Don’t be afraid to get a second opinion or switch doctors.  

[Bigdogtimo]

18 minutes ago, georgenoha12 said:

Rosetapper are you diagnosed?

Yes, celiac and dh. Biopsy,endoscopy and blood test. 

[europyia]

On 4/12/2022 at 7:32 PM, bookmuse said:

Yes, sounds familiar! My old dermatologist took a biopsy right on top of the lesion (incorrect method) and then told me I probably had flea bites. I have a new dermatologist who understands the correct way to do the skin biopsy but I haven't had the courage to eat more gluten to give him something to biopsy yet! 

I don't blame you! If I'm slightly glutened, my spot will start itching again with no rash. So weird!

[europyia]

On 11/13/2013 at 11:12 PM, hmitchell said:

These are pictures of my 4 year olds blisters 

Do they look like DH?

We have seen many Dermatologists and Allergists who said they don't know what it is but it looks like DH so we had a biopsy which came back inconclusive.

We have been Gluten free for 18 months but the spots keep coming, When she has Dairy or Soy she scratched all night even with Antihistamines.

 

http://www.flickr.com/photos/ethanhobbs/10848312076/

http://www.flickr.com/photos/ethanhobbs/10848415764/

https://farm4.staticflickr.com/3819/10848604843_67d401141c_b.webp>

 

I have been reading many posts and it seems the members here know more than the doctors we have been seeing.

 

if anyone can help me identify these spots I would be so grateful and relieved as the past 2 years have been super hard living with the night scratching and bleeding. 

 

worried mom 

Oh momma! How my heart hurts for you! Your child has def opened those up by scratching them. The itching is UNBEARABLE!! Id put her on a "Whole Thirty" diet. Meaning nothing from a box or can or bottle! Just meats, fruits, veggies, nuts. NO DAIRY, NO SUGAR EITHER! See how she feels in 3 weeks. 

Then, because her diet is so limited, you can add in one thing at a time.....some cheese. And see what happens. Then eggs.....wait and see. Thats what I did. Helped me pinpoint what my body hated. It can be different for all of us. Some of us can do soy, some can't. Some can handle gluten-free oats, some can't. 

I'll be praying for you are your little one.

[europyia]

On 1/12/2013 at 8:06 PM, anonymous_123 said:

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??!!

Thats RIGHT where my rash is😳

[europyia]

On 1/20/2013 at 9:51 AM, squirmingitch said:

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

The itching is INSANE!!!!

[europyia]

On 4/7/2022 at 10:53 AM, europyia said:

My dh rash only came out once. But since, that area will itch if I'm slightly glutened. Praying it never comes back! It was only about the size of a quarter and kept me up all night! I can't imagine living with it all over. 

Back in the day, they called it " the suicide rash" because people would be so miserable,  they'd end their lives. This was before they knew what it was. I had a dermatologist think mine was from a spider bite before I was diagnosed with dh. 

We need to go back to these doctors and correct them! So they can begin to understand, diagnose and treat patients correctly.

Not sure how i can attach my photos???

Here are my photos....showing in progression:

https://photos.app.goo.gl/8PiVPjdfnS9rP2F58

 

[trents]

After you have submitted a post you only have a short time windows to edit and attach photos. After that time window is closed you would need to start another post in order to include an attachment. If time window is still open you click on the three vertical dots in the upper right corner of the post widow area and then choose "Edit". The rest will be obvious.

Edited April 28, 2022 by trents