Does your DH change? How do you cope with DH?

[Arietti]

I'm a newly diagnosed Celiacs (multiple drs agree), based off my symptoms. It started 6 months ago with a general itchy scalp and rash. Dr gave me steroids, didn't help. 3 months later it started bilaterally on my elbows, then knees, ankles.. practically my whole lower body. It looked like a cluster of hives almost, swollen, raised pink/red patches. It was intensely itchy or buring, but I didn't scratch because it would just make it worse. I saw a different dermatologist and we tried different things, nothing worked. But then it clicked, maybe I have DH. I brought this to her attention and she agreed. Went off gluten and the rashes improved and disappeared. Rash free for 6 weeks!

Until the last 2 weeks. I had sciatic pain that flared up, very bad headache+nausea (happens when I get glutened) and then the rash appeared, all on the same day. I am assuming I got glutened over Christmas or New years at the in laws.This time the rash was very deep, and on one side of my leg. It looked more like pustules/blisters, and has a grouped linear formation. I thought it was odd since previously all my dh rashes were more superficial, bilateral, very itchy and resolved in a couple weeks. This is on one side, deeper, wasn't very itchy and looks like it might scar or take much longer to heal. Does DH look or act different sometimes? I've been gluten free for 3-4months so I'm also guessing my reaction to gluten will be more severe now too.

Has anyone had dh on just one side before? How do you get it to heal faster? How do you just deal with this emotionally?

I'm a dancer and frequently show my legs. Now I'm afraid to... I have to wear tights or put on bandages so that I don't face the stigma...I don't want people forming opinions or asking questions.

Thanks in advance for all your help!

[Arietti]

It's worth adding, I have an auto immune thyroid disorder (hashimotos), and was negative on the IGA blood test (but was already 6 weeks gluten-free at the time). Doctor agrees that doing a gluten challenge would be a huge hassle for me and not worth it. I tried it for few days and was very sick- severe nausea, headache, dizziness and dh flare ups. 

 

 

[LCAnacortes]

I have not been officially diagnosed with celiac but have first cousins and their kids that have been officially diagnosed.  I have all kinds of symptoms including DH.  I had rash and lesions all over and eczema behind my ears which improved greatly when I stopped eating gluten in May.  But I still had problems. It was due to cross contamination in my household and eating out.  I am pretty sensitive.  Two things that caught me - were my hair care products & cosmetics.  I had a conditioner that had wheat and it caused lesions on my scalp.  And our cat's dry food had wheat in it and every time I touched that old spots on my neck would break out.  We are getting better about identifying products that I have problems with and cross contamination so my flares are getting farther apart. And - I'm not going to do a gluten challenge either.  It is not worth it for me.  Best of luck on your journey. There are lots of super smart people here to help. 

[knitty kitty]

@Arietti,

Yes, I have DH and sometimes it's not symmetrical.  Yes, sometimes my outbreaks are different.  

I've had DH blisters happen on my left leg.  I sleep on my left side (for good digestion) and have woken up with a stripe of blisters down one leg.  It might have been a seam down the leg in my pajamas.... 

DH is pressure sensitive.  It can occur under tight clothing, along seam lines like on jeans, and especially under elastic, like underwear wristbands and leg openings.  

DH is aggregated by iodine containing foods and medications.  I avoid foods high in iodine like seafood and crustaceans.  I also avoid dairy because dairy contains lots of iodine.  Iodized salt is out, too.  

I take Niacinamide or the flushing form of Niacin Vitamin B 3.  Niacin has been shown to help clear the skin.  Vitamin C helps, too.  

I couldn't do a gluten challenge either.   Hang in there!  It will get better!  

[Arietti]

13 hours ago, LCAnacortes said:

I have not been officially diagnosed with celiac but have first cousins and their kids that have been officially diagnosed.  I have all kinds of symptoms including DH.  I had rash and lesions all over and eczema behind my ears which improved greatly when I stopped eating gluten in May.  But I still had problems. It was due to cross contamination in my household and eating out.  I am pretty sensitive.  Two things that caught me - were my hair care products & cosmetics.  I had a conditioner that had wheat and it caused lesions on my scalp.  And our cat's dry food had wheat in it and every time I touched that old spots on my neck would break out.  We are getting better about identifying products that I have problems with and cross contamination so my flares are getting farther apart. And - I'm not going to do a gluten challenge either.  It is not worth it for me.  Best of luck on your journey. There are lots of super smart people here to help. 

I'm glad you found out that it ran in your family! That just makes it so much easier to figure out, because it's often hereditary, so you don't always have to go through the pain of a diagnosis. AND makes it easier for you to learn from and you have a network from the get go! I'm the first one in my family that I know of, so I'm a work in progress...

Yes to the beauty products! I'm in the process of finding out what I'm sensitive to. So far touching things doesn't seem like a trigger (I prepare my partners lunch that is non gluten-free, and touch my dogs food), but that could always change! But I did research my face/skin/hair products and they don't have gluten! 

[Arietti]

10 hours ago, knitty kitty said:

@Arietti,

Yes, I have DH and sometimes it's not symmetrical.  Yes, sometimes my outbreaks are different.  

I've had DH blisters happen on my left leg.  I sleep on my left side (for good digestion) and have woken up with a stripe of blisters down one leg.  It might have been a seam down the leg in my pajamas.... 

DH is pressure sensitive.  It can occur under tight clothing, along seam lines like on jeans, and especially under elastic, like underwear wristbands and leg openings.  

DH is aggregated by iodine containing foods and medications.  I avoid foods high in iodine like seafood and crustaceans.  I also avoid dairy because dairy contains lots of iodine.  Iodized salt is out, too.  

I take Niacinamide or the flushing form of Niacin Vitamin B 3.  Niacin has been shown to help clear the skin.  Vitamin C helps, too.  

I couldn't do a gluten challenge either.   Hang in there!  It will get better!  

Thank you for the reply! Helpful info!

Glad to know DH rears it's ugly head in many forms. Makes sense that it could be pressure/friction sensitive too. My current stripe is on my left leg too! 

I just found out about the iodine!! Catch 22, because I'm hypothyroid the Dr often recommends iodine. But I haven't been taking any extra anyway, because it never made a difference in my labwork. I think this recent DH flare-up may be either from too much iodine (I made miso soup w/ tofu, seaweed which is huge in iodine and fish) or from getting glutened/cross contaminationed at the inlaws during Christmas. Or it could be both! Dairy is a hard one to stay away from though! I don't consume a ton (I'm lactose intolerant), but I like making one or two matcha lattes on the morning with fat free fairlife milk. I'll try to stick to one a day to dairy. And I also bought the non ionized salt.

I'll definitely look up the niacinamide! I take a few vitamins, collagen and glucosamine ( all gluten-free). I'll see if it has any of the B3 form in it. 

 

[Arietti]

22 hours ago, Arietti said:

I'm a newly diagnosed Celiacs (multiple drs agree), based off my symptoms. It started 6 months ago with a general itchy scalp and rash. Dr gave me steroids, didn't help. 3 months later it started bilaterally on my elbows, then knees, ankles.. practically my whole lower body. It looked like a cluster of hives almost, swollen, raised pink/red patches. It was intensely itchy or buring, but I didn't scratch because it would just make it worse. I saw a different dermatologist and we tried different things, nothing worked. But then it clicked, maybe I have DH. I brought this to her attention and she agreed. Went off gluten and the rashes improved and disappeared. Rash free for 6 weeks!

Until the last 2 weeks. I had sciatic pain that flared up, very bad headache+nausea (happens when I get glutened) and then the rash appeared, all on the same day. I am assuming I got glutened over Christmas or New years at the in laws.This time the rash was very deep, and on one side of my leg. It looked more like pustules/blisters, and has a grouped linear formation. I thought it was odd since previously all my dh rashes were more superficial, bilateral, very itchy and resolved in a couple weeks. This is on one side, deeper, wasn't very itchy and looks like it might scar or take much longer to heal. Does DH look or act different sometimes? I've been gluten free for 3-4months so I'm also guessing my reaction to gluten will be more severe now too.

Has anyone had dh on just one side before? How do you get it to heal faster? How do you just deal with this emotionally?

I'm a dancer and frequently show my legs. Now I'm afraid to... I have to wear tights or put on bandages so that I don't face the stigma...I don't want people forming opinions or asking questions.

Thanks in advance for all your help!

Finally figured out how to add photos. 

Does this look like the various types of DH you have experienced? All erupted after consuming gluten or foods high in iodine. Subsequently was also sick, nauseous with a severe headache (like a hangover) when they started. 

[knitty kitty]

@Arietti,

Yeah!  You figured out how to post!  😺

My DH gets really puffy and blister-y looking if I've had both dairy and gluten.  If I just get glutened, it's smaller, drier bumps.  

Are you keeping a food journal?  It can help pinpoint problematic foods.  Be sure to note any symptoms afterwards (including changes in bowel movements as well as DH outbreaks).  

I had to give up dairy in my hot drinks, too.  It's a big mental adjustment to realize that my usually comforting cup of tea with milk and sugar, or coffee with cream, is no longer my friend. 

Now is the time to explore new options, at least for a few months while you're healing.  I found a new friend in Oolong tea (no cream or sugar required).  It's very relaxing.  Oolong tea contains an amino acid L-Theanine which helps calm inflammation in the gastrointestinal tract.  

I found this article about Thiamine Vitamin B1 and a connection to hypothyroidism very interesting.  It helped me.  Supplementing thiamine has made a big difference in my healing journey. 

The thyroid uses a large amount of Thiamine, and if Thiamine is low, the thyroid doesn't function properly even if there's plenty of iodine available.  

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

Keep us posted on your progress!  

[Rogol72]

@Arietti,

My celiac disease diagnosis was by skin biopsy for DH. I get it on my elbows pretty bad if I'm not careful, on the knees, backs of the knees and hips. I'm trying to figure out what my threshold for iodine consumption is since we need it for thyroid, and coeliacs are prone to thyroid disease! I know my triggers, I thought it was the teabags causing the tell tale random pin pricks in my skin before a flare ... nope ... it was the iodine in dairy in tea and coffee. I can even tell good quality milk, cheese, yoghurt from the cheap stuff.

Some interesting studies relating to iodine ...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698721/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9576532/

[Liquid lunch]

@Ariettiim sure this mixture will help..

1 part neem essential oil

2 parts tea tree essential oil

3 parts olive oil

It’ll get rid of those in no time, make sure the essential oils are not synthetic.

[Grammy9]

On 1/8/2023 at 12:50 PM, Arietti said:

I'm a newly diagnosed Celiacs (multiple drs agree), based off my symptoms. It started 6 months ago with a general itchy scalp and rash. Dr gave me steroids, didn't help. 3 months later it started bilaterally on my elbows, then knees, ankles.. practically my whole lower body. It looked like a cluster of hives almost, swollen, raised pink/red patches. It was intensely itchy or buring, but I didn't scratch because it would just make it worse. I saw a different dermatologist and we tried different things, nothing worked. But then it clicked, maybe I have DH. I brought this to her attention and she agreed. Went off gluten and the rashes improved and disappeared. Rash free for 6 weeks!

Until the last 2 weeks. I had sciatic pain that flared up, very bad headache+nausea (happens when I get glutened) and then the rash appeared, all on the same day. I am assuming I got glutened over Christmas or New years at the in laws.This time the rash was very deep, and on one side of my leg. It looked more like pustules/blisters, and has a grouped linear formation. I thought it was odd since previously all my dh rashes were more superficial, bilateral, very itchy and resolved in a couple weeks. This is on one side, deeper, wasn't very itchy and looks like it might scar or take much longer to heal. Does DH look or act different sometimes? I've been gluten free for 3-4months so I'm also guessing my reaction to gluten will be more severe now too.

Has anyone had dh on just one side before? How do you get it to heal faster? How do you just deal with this emotionally?

I'm a dancer and frequently show my legs. Now I'm afraid to... I have to wear tights or put on bandages so that I don't face the stigma...I don't want people forming opinions or asking questions.

Thanks in advance for all your help!

I am celiac for 2.5 years. My reaction to being glutened is DH. Took almost 2 years to relate the two as I was first dealing with pain and bloating of the stomach and didn’t link my rash. Dr said take benedryl which helped but then it got worse because although benedryl ingredients are gluten free their facility is not. Cross contamination. I’m also lactose intolerant which I eventually I eliminated milk altogether which was not easy. But I finally feel soooo much better. The only relief from the itch for me has been U-Lactin lotion. I rushed from my shoulders down my back to my knees. Now I have it more under control but breakouts occur and the lotion stops the itch. Yes it leaves scars but attributed that to my sensitive skin.  Clobetasol seems to help with the scars but the ingredients are not what you want in your body for any length of time. I’m 76 years young and as vain as I am I’ll put up with the scars. The sooner you apply the lotion the less scaring. Yes it is all consuming and overwhelming. Until you get it under control and figure out your diet. Good luck. 

[Grammy9]

1 minute ago, Grammy9 said:

I am celiac for 2.5 years. My reaction to being glutened is DH. Took almost 2 years to relate the two as I was first dealing with pain and bloating of the stomach and didn’t link my rash. Dr said take benedryl which helped but then it got worse because although benedryl ingredients are gluten free their facility is not. Cross contamination. I’m also lactose intolerant which I eventually I eliminated milk altogether which was not easy. But I finally feel soooo much better. The only relief from the itch for me has been U-Lactin lotion. I rushed from my shoulders down my back to my knees. Now I have it more under control but breakouts occur and the lotion stops the itch. Yes it leaves scars but attributed that to my sensitive skin.  Clobetasol seems to help with the scars but the ingredients are not what you want in your body for any length of time. I’m 76 years young and as vain as I am I’ll put up with the scars. The sooner you apply the lotion the less scaring. Yes it is all consuming and overwhelming. Until you get it under control and figure out your diet. Good luck. 

FYI most dermatologists don’t recognize gluten. Nor do allergists. My GI was my salvation. Diagnosed after endoscopy and biopsy. The right nutritionist might help but I couldn’t find one 

[Arietti]

On 1/9/2023 at 2:06 PM, knitty kitty said:

@Arietti,

Yeah!  You figured out how to post!  😺

My DH gets really puffy and blister-y looking if I've had both dairy and gluten.  If I just get glutened, it's smaller, drier bumps.  

Are you keeping a food journal?  It can help pinpoint problematic foods.  Be sure to note any symptoms afterwards (including changes in bowel movements as well as DH outbreaks).  

I had to give up dairy in my hot drinks, too.  It's a big mental adjustment to realize that my usually comforting cup of tea with milk and sugar, or coffee with cream, is no longer my friend. 

Now is the time to explore new options, at least for a few months while you're healing.  I found a new friend in Oolong tea (no cream or sugar required).  It's very relaxing.  Oolong tea contains an amino acid L-Theanine which helps calm inflammation in the gastrointestinal tract.  

I found this article about Thiamine Vitamin B1 and a connection to hypothyroidism very interesting.  It helped me.  Supplementing thiamine has made a big difference in my healing journey. 

The thyroid uses a large amount of Thiamine, and if Thiamine is low, the thyroid doesn't function properly even if there's plenty of iodine available.  

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

Keep us posted on your progress!  

Wow! Never really thought about thiamine before, but I have so many of those symptoms with my thyroid. Definitely going to look up some supplements to see if it helps! 

I really should keep a food journal as I know that helps correlate flare ups. I've been thinking about it! 

The dairy in my coffee/tea/lattes is a big one. I can't have many "goodies" anymore, but that's one thing I thought I could have. *sigh* Soy/almond milk doesn't do it for me. I did buy oat milk today and that was pretty good! I do drink a variety of herbal teas and love Oolong too! ❤️ 

[Arietti]

On 1/9/2023 at 3:10 PM, Rogol72 said:

@Arietti,

My celiac disease diagnosis was by skin biopsy for DH. I get it on my elbows pretty bad if I'm not careful, on the knees, backs of the knees and hips. I'm trying to figure out what my threshold for iodine consumption is since we need it for thyroid, and coeliacs are prone to thyroid disease! I know my triggers, I thought it was the teabags causing the tell tale random pin pricks in my skin before a flare ... nope ... it was the iodine in dairy in tea and coffee. I can even tell good quality milk, cheese, yoghurt from the cheap stuff.

Some interesting studies relating to iodine ...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698721/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9576532/

Wow really interesting article! Even NSAIDS are linked to DH!? Jeeze. I've been checking the medicines I take though. 

When you had your biopsy done, how many did they do? Did it leave scaring? And did you have to do it at the first signs of eruption?

Also I'm curious do you have many other symptoms? I was reading many DH sufferers don't necessarily have all the tall tale GI symptoms of many Celiacs, but may have other symptoms (headaches, fatigue, nausea ect). 

22 hours ago, Liquid lunch said:

@Ariettiim sure this mixture will help..

1 part neem essential oil

2 parts tea tree essential oil

3 parts olive oil

It’ll get rid of those in no time, make sure the essential oils are not synthetic.

Thank you! I will definitely give that a try too. 

[knitty kitty]

@Arietti,

I still miss "a proper cuppa" but my immune system recognizes dairy as gluten.  The milk protein casein is similarly shaped the same as gluten, so anti-gluten antigens attack.  

I have oat milk ice cream and gluten free waffle cones by JOY for my "goodies".  Another favorite is dates with dark chocolate.  

Check out @Maddie6332's chocolate chip pumpkin muffins!  They sound delicious!

Think I'll have some Oolong now! 

So glad I could help!  

Edited January 10, 2023 by knitty kitty
Add link

[Arietti]

8 hours ago, Grammy9 said:

I am celiac for 2.5 years. My reaction to being glutened is DH. Took almost 2 years to relate the two as I was first dealing with pain and bloating of the stomach and didn’t link my rash. Dr said take benedryl which helped but then it got worse because although benedryl ingredients are gluten free their facility is not. Cross contamination. I’m also lactose intolerant which I eventually I eliminated milk altogether which was not easy. But I finally feel soooo much better. The only relief from the itch for me has been U-Lactin lotion. I rushed from my shoulders down my back to my knees. Now I have it more under control but breakouts occur and the lotion stops the itch. Yes it leaves scars but attributed that to my sensitive skin.  Clobetasol seems to help with the scars but the ingredients are not what you want in your body for any length of time. I’m 76 years young and as vain as I am I’ll put up with the scars. The sooner you apply the lotion the less scaring. Yes it is all consuming and overwhelming. Until you get it under control and figure out your diet. Good luck. 

Thank you for sharing! It's crazy how much cross contamination is out there. Literally can be glutened by anything you put in your body. 

I will definitely look up the U-lactin ointment too! I'm using clobetasol right now, but I'm not sure if it's working. It's awful that on top of all the celiac symptoms we have, we have to deal with scarring too!

[Arietti]

8 hours ago, Grammy9 said:

FYI most dermatologists don’t recognize gluten. Nor do allergists. My GI was my salvation. Diagnosed after endoscopy and biopsy. The right nutritionist might help but I couldn’t find one 

Too true! My dermatologist somehow knew more about DH than my GI doctor did though, Wwhich is weird. He said celiacs get referred to him for the GI stuff, and he rarely sees the skin problems so he doesn't know much about it. He only recommended to me to stay off gluten (duhh!!).

[Rogol72]

1 hour ago, Arietti said:

Wow really interesting article! Even NSAIDS are linked to DH!? Jeeze. I've been checking the medicines I take though. 

When you had your biopsy done, how many did they do? Did it leave scaring? And did you have to do it at the first signs of eruption?

Also I'm curious do you have many other symptoms? I was reading many DH sufferers don't necessarily have all the tall tale GI symptoms of many Celiacs, but may have other symptoms (headaches, fatigue, nausea ect). 

@Arietti,

I wasn't aware that NSAIDS are linked to DH but it wouldn't surprise me, since upon my UC diagnosis my gastroenterologist said to avoid NSAIDS as they can cause UC flares.

It was a sudden ichty eruption of what appeared to be eczema on my back, which was biopsied when steroid creams didn't clear it up. No idea how many biopsies, but probably 2 or 3. No scars from the biopsies, though my forearms a scarred from flare ups and the blisters over the years.

I reckon the UC was masking undiagnosed celiac disease for years until it manifested as DH. I think symptoms are different for every Coeliac, I can't tolerate oats at the moment. I do get really tired if I consume a small bowl of gluten-free oats. Dark chocolate doesn't agree with me either.

The goalposts are continually moving with celiac disease and DH, so I religiously keep a food diary to see what works and doesn't ... and loads of supplementation, especially minerals and trace minerals to give the body what it needs to heal.

[Maddie6332]

2 hours ago, knitty kitty said:

@Arietti,

I still miss "a proper cuppa" but my immune system recognizes dairy as gluten.  The milk protein casein is similarly shaped the same as gluten, so anti-gluten antigens attack.  

I have oat milk ice cream and gluten free waffle cones by JOY for my "goodies".  Another favorite is dates with dark chocolate.  

Check out @Maddie6332's chocolate chip pumpkin muffins!  They sound delicious!

Think I'll have some Oolong now! 

So glad I could help!  

Thanks so much for recommending one of my posts in yours! I really appreciate it! 🥰🫠😆

[Merry Berry]

Hello, I have been struggling with gluten intolerance and other food allergies for a while. However, I think that I have developed DH since the latter part of last year. My confidence is really low due to the rash and scarring on my face. I initially thought it was a skin infestation as I had really itchy skin which would keep me up at night.

I went to the dermatologist and he suspected scabies but the medication only stopped the itching temporarily. I had blood tests but my weight was dropping rapidly so I had to start shopping in the kids section for clothes. My GP wasn't very helpful and just said he had done all he could do at primary health care level. I responded by asking if I should just sit and waste away? In response he said that a referral would be made to see a dietitian. In the mean time I managed to self diagnose myself but I have an appointment with gastroenterology next month. 

I had no idea that iodine was also a trigger which explains why my stomach reacted badly to a bag of crisps. I am still experiencing itchy skin on my hands and feet plus I woke up this morning with one red blister and a little rash on the back of my neck. How do you stay positive and maintain good mental health? I really struggle with this and would be grateful for any help/tips. Thanks

[trents]

21 minutes ago, Merry Berry said:

Hello, I have been struggling with gluten intolerance and other food allergies for a while. However, I think that I have developed DH since the latter part of last year. My confidence is really low due to the rash and scarring on my face. I initially thought it was a skin infestation as I had really itchy skin which would keep me up at night.

I went to the dermatologist and he suspected scabies but the medication only stopped the itching temporarily. I had blood tests but my weight was dropping rapidly so I had to start shopping in the kids section for clothes. My GP wasn't very helpful and just said he had done all he could do at primary health care level. I responded by asking if I should just sit and waste away? In response he said that a referral would be made to see a dietitian. In the mean time I managed to self diagnose myself but I have an appointment with gastroenterology next month. 

I had no idea that iodine was also a trigger which explains why my stomach reacted badly to a bag of crisps. I am still experiencing itchy skin on my hands and feet plus I woke up this morning with one red blister and a little rash on the back of my neck. How do you stay positive and maintain good mental health? I really struggle with this and would be grateful for any help/tips. Thanks

Welcome to the forum, Merry Berry!

Have you been officially diagnosed with celiac disease or even been tested for it? The reason I ask is that DH is a classic manifestation of celiac disease and there is no other known cause for it. Have you had antibody testing done for celiac disease or an endoscopy with biopsy to examine the damage done to the small bowel lining by celiac disease? If not, this should be your next step. The first stage of diagnostic testing for celiac disease is a simple blood draw to test for antibodies that are specific for celiac disease. If the antibody tests are positive, then an endoscopy with biopsy of the small bowel lining is usually ordered.

Not sure what you mean by "gluten intolerance" as that can mean either celiac disease or NCGS (Non Celiac Gluten Sensitivity). Celiac disease is not a food allergy, it is an autoimmune disorder. The immune system mechanism of NCGS is not as clearly understood.

[Merry Berry]

Just now, trents said:

Welcome to the forum, Merry Berry!

Have you been officially diagnosed with celiac disease or even been tested for it? The reason I ask is that DH is a classic manifestation of celiac disease and there is no other known cause for it. Have you had antibody testing done for celiac disease or an endoscopy with biopsy to examine the damage done to the small bowel lining by celiac disease? If not, this should be your next step. The first stage of diagnostic testing for celiac disease is a simple blood draw to test for antibodies that are specific for celiac disease. If the antibody tests are positive, then an endoscopy with biopsy of the small bowel lining is usually ordered.

Not sure what you mean by "gluten intolerance" as that can mean either celiac disease or NCGS (Non Celiac Gluten Sensitivity). Celiac disease is not a food allergy, it is an autoimmune disorder. The immune system mechanism of NCGS is not as clearly understood.

Hi Trents, thank you for coming back to me. I was tested years ago but that result was negative. As my Dr was not very helpful this time around, I will discuss it with the gastroenterologist. I currently am taking immunosuppressive tablets which probably doesn't help things. I have spoken to someone from the Celiac society about sorting out getting tested but I have already taken steps to remove gluten but I understand that it needs to be included in my diet otherwise the test will come back negative. 

[trents]

22 minutes ago, Merry Berry said:

 I have spoken to someone from the Celiac society about sorting out getting tested but I have already taken steps to remove gluten but I understand that it needs to be included in my diet otherwise the test will come back negative. 

This is true. How confident are you that you have achieved a truly gluten free state? "I have already taken steps to remove gluten" sounds like it is a work in progress.

[barbmoody]

@knitty kittyis right on.  Anything that causes pressure on my skin can make DH erupt.  I was diagnosed in 2003.  I get DH mostly around my hairline, wrists and upper and lower back.  I can see that it's worse for many of you.  Guess I should be grateful.   The itching is so intense, I can't stop myself sometimes.  Does seem like to me that if I never scratch it to begin with, it goes away faster.  

[Maddie6332]

On 1/11/2023 at 8:43 AM, Merry Berry said:

Hello, I have been struggling with gluten intolerance and other food allergies for a while. However, I think that I have developed DH since the latter part of last year. My confidence is really low due to the rash and scarring on my face. I initially thought it was a skin infestation as I had really itchy skin which would keep me up at night.

I went to the dermatologist and he suspected scabies but the medication only stopped the itching temporarily. I had blood tests but my weight was dropping rapidly so I had to start shopping in the kids section for clothes. My GP wasn't very helpful and just said he had done all he could do at primary health care level. I responded by asking if I should just sit and waste away? In response he said that a referral would be made to see a dietitian. In the mean time I managed to self diagnose myself but I have an appointment with gastroenterology next month. 

I had no idea that iodine was also a trigger which explains why my stomach reacted badly to a bag of crisps. I am still experiencing itchy skin on my hands and feet plus I woke up this morning with one red blister and a little rash on the back of my neck. How do you stay positive and maintain good mental health? I really struggle with this and would be grateful for any help/tips. Thanks

I think scars make our skin beautiful! And it lets people know we aren't going down without a fight! It makes us look touch and strong at the same time. I would recommend staying positive by doing things you love, and focusing on yourself as much as possible! To maintain good mental health, I like to write about my day and explain every single detail, and that really helps me. Just remember, "Self care isn't selfish" and my favorite quote of all that I think everybody should here is "Everything has beauty,but not everyone can see it!"

I hope you have a great day, and I hope this helps! 

Keep shining and being amazing! 💖