DH...or not?

[len4ita]

Hello everyone! I have been following the forum for some time now but this is the first time I registered and decided to post as I need advice from someone who has experience with DH. I little bit of history...I was diagnosed with Hashimoto's few years ago. I started following gluten free diet which I realized was not very strict at that time meaning I stopped consuming gluten, wheat, etc. but I did not exclude the foods that were marked as 'possibly cross-contaminated with gluten'. I thought that is not so important at that time. Yet I have seen instant relief in my thyroid symptoms and my antibodies flew down every month. I also stopped consuming dairy at that time. Then, after about 10 months I was craving ice cream soooo much that I told 'ok, I will just have it one time'. Bad decision. Needless to say I ended up consuming ice cream and the wheat cone they put it in many times after that and my antibodies increased, too. At that time I noticed strong headaches, lack of attention, and itchy rash that appeared on my face. I started following strict gluten free diet again, the rash started to clear up veeeeery slowly, and few months later I finally decided to visit a gastro to get tested for celiac disease. Another mistake! She told me I need to introduce gluten again to get correct results. So I did it. I had another flare up and the worst headache ever I got in my life. I added gluten to my diet for 2 weeks only but I felt I could not continue this diet so I called off my next appointment. The gastro told me I could get a DNA test to know if I am career of the HLA DQ genes. I shall note that at that time I have been already tested for food intolerances and gluten came out as positive on that panel. Dairy was fine even though cow products were on the border (and I didn't consume much cow dairy at that time, mostly sheep and goat). I did a test with 23andme and had the results analysed through one of the sites that offer additional dna analysis services. I had one of the genes (DQ 2.2). I started a strict gluten free diet and this time I made sure I did not consume any cross contaminated foods as much as I could. This resulted in slow healing of my face rash and in about 9 months my face has been clean! I couldn't believe it. I was finally able to go our without foundation outside and everyone complemented my clear skin. I never had any specific gastro symptoms I shall say so again I was confused if gluten might be the culpit. I did introduce gluten for few weeks again and finally got blood tests done which, of course, came out negative (doctors said I shall consume gluten at least 2-3 months to get it accumulated). My face was flared up again but I was so confused and I was no longer sure if it is gluten, dairy, else....sigh...I started strict gluten free diet again.  Then, I went to a birthday party two weeks ago and on the next day I woke up with very itchy rash on both on my hands. It basically was a very similar pattern on both hands starting around my wrists and spreading to my elbows. I have very sensitive skin and I first thought this is an allergic reaction but I had no clue to what it might be - I did not change any cosmetics, soaps, other detergents, no new jewelries (I have nickel allergy), clothes...nothing new. Yet I started with the usual anti-allergic treatments to find out the rash didn't disappear nor become much better within few days as it usually happens when I have a true allergy. Instead watery blisters appeared and the itch was awful especially approaching the evening. The blisters were small, then they grouped into larger blisters, those blisters that 'became better' turned into a very red scale marks. Again doctors said it is allergy but it responds very bad to those treatments (almost not at all) and even now, two weeks later I still have some blisters left, my skin still itches and it has very strange red color. The rash is just covering smaller area now (not to my elbows) but it is still there..argh! Anyone who has dealt with DH (Duhring's disease), please, advise does this rash resemble what you get with Duhring's: Open Original Shared Link, Open Original Shared Link? I start wondering if I could have been glutened on the birthday dinner and with all the dairy around (iodine!) it might have just been an added extra to provoke the rash. I am sorry for the bad photos, I did my best to take them holding the phone with one hand. I also start wondering if what I had on my face might be related to DH. The rash on my face never had those watery blisters, it was more like hives, very very itchy. I might try to find some old photos of my face rash, too. Shall I seek further diagnosis and speak about DH with my doctor? I am so confused as to how to proceed. I even did a iodine patch test last night but my skin became very red and itchy within few minutes of applying the patch so I had to take it off after an hour. My heart was racing for few hours after that and I can still feel the place the patch was applied to as extremely painful.

 

[kareng]

22 minutes ago, len4ita said:

Hello everyone! I have been following the forum for some time now but this is the first time I registered and decided to post as I need advice from someone who has experience with DH. I little bit of history...I was diagnosed with Hashimoto's few years ago. I started following gluten free diet which I realized was not very strict at that time meaning I stopped consuming gluten, wheat, etc. but I did not exclude the foods that were marked as 'possibly cross-contaminated with gluten'. I thought that is not so important at that time. Yet I have seen instant relief in my thyroid symptoms and my antibodies flew down every month. I also stopped consuming dairy at that time. Then, after about 10 months I was craving ice cream soooo much that I told 'ok, I will just have it one time'. Bad decision. Needless to say I ended up consuming ice cream and the wheat cone they put it in many times after that and my antibodies increased, too. At that time I noticed strong headaches, lack of attention, and itchy rash that appeared on my face. I started following strict gluten free diet again, the rash started to clear up veeeeery slowly, and few months later I finally decided to visit a gastro to get tested for celiac disease. Another mistake! She told me I need to introduce gluten again to get correct results. So I did it. I had another flare up and the worst headache ever I got in my life. I added gluten to my diet for 2 weeks only but I felt I could not continue this diet so I called off my next appointment. The gastro told me I could get a DNA test to know if I am career of the HLA DQ genes. I shall note that at that time I have been already tested for food intolerances and gluten came out as positive on that panel. Dairy was fine even though cow products were on the border (and I didn't consume much cow dairy at that time, mostly sheep and goat). I did a test with 23andme and had the results analysed through one of the sites that offer additional dna analysis services. I had one of the genes (DQ 2.2). I started a strict gluten free diet and this time I made sure I did not consume any cross contaminated foods as much as I could. This resulted in slow healing of my face rash and in about 9 months my face has been clean! I couldn't believe it. I was finally able to go our without foundation outside and everyone complemented my clear skin. I never had any specific gastro symptoms I shall say so again I was confused if gluten might be the culpit. I did introduce gluten for few weeks again and finally got blood tests done which, of course, came out negative (doctors said I shall consume gluten at least 2-3 months to get it accumulated). My face was flared up again but I was so confused and I was no longer sure if it is gluten, dairy, else....sigh...I started strict gluten free diet again.  Then, I went to a birthday party two weeks ago and on the next day I woke up with very itchy rash on both on my hands. It basically was a very similar pattern on both hands starting around my wrists and spreading to my elbows. I have very sensitive skin and I first thought this is an allergic reaction but I had no clue to what it might be - I did not change any cosmetics, soaps, other detergents, no new jewelries (I have nickel allergy), clothes...nothing new. Yet I started with the usual anti-allergic treatments to find out the rash didn't disappear nor become much better within few days as it usually happens when I have a true allergy. Instead watery blisters appeared and the itch was awful especially approaching the evening. The blisters were small, then they grouped into larger blisters, those blisters that 'became better' turned into a very red scale marks. Again doctors said it is allergy but it responds very bad to those treatments (almost not at all) and even now, two weeks later I still have some blisters left, my skin still itches and it has very strange red color. The rash is just covering smaller area now (not to my elbows) but it is still there..argh! Anyone who has dealt with DH (Duhring's disease), please, advise does this rash resemble what you get with Duhring's: Open Original Shared Link, Open Original Shared Link? I start wondering if I could have been glutened on the birthday dinner and with all the dairy around (iodine!) it might have just been an added extra to provoke the rash. I am sorry for the bad photos, I did my best to take them holding the phone with one hand. I also start wondering if what I had on my face might be related to DH. The rash on my face never had those watery blisters, it was more like hives, very very itchy. I might try to find some old photos of my face rash, too. Shall I seek further diagnosis and speak about DH with my doctor? I am so confused as to how to proceed. I even did a iodine patch test last night but my skin became very red and itchy within few minutes of applying the patch so I had to take it off after an hour. My heart was racing for few hours after that and I can still feel the place the patch was applied to as extremely painful.

 

Just an FYI -Dh on a Celiac forum stands for Dermatitis Herpetiformis,  we rarely use Duhrings.  lol

 

[Victoria1234]

If you can get to a dermatologist, have them analyze your rash for dh. They take a sample next to the rash on clear skin, if I remember correctly. Got dx with mine in early 2008, so can't recall exactly! Anyways I have been told that dh equals celiac, no other test required. Someone else pls correct me if I'm wrong!

[cyclinglady]

1 hour ago, Victoria1234 said:

If you can get to a dermatologist, have them analyze your rash for dh. They take a sample next to the rash on clear skin, if I remember correctly. Got dx with mine in early 2008, so can't recall exactly! Anyways I have been told that dh equals celiac, no other test required. Someone else pls correct me if I'm wrong!

You are right!  A diagnosis of DH (skin biopsy) means you have a diagnosis of celiac disease and an intestinal biopsy is not necessary.  A person whose celiac disease presents in the skin must take the same precautions as a celiac and maintain a gluten free diet.  

[cyclinglady]

@len4ita-- it sounds like you need to decide whether you need an official diagnosis or not.  You are going to have to decide  (based on your own set of circumstances) if you are up to a  gluten challenge for 8 to 12 weeks in order to build up the antibodies needed for testing whether they are found in your skin or in blood work.  There is no easy way.  ☹️

You can choose to go gluten free for life and avoid all hidden sources and avoid cross contamination.  I do not have DH, but if I did, I would be super strict in order  to avoid that hellacious rash!  

Glad to hear that your Hashi's settled down on the diet.  Mine did too for a while.  But my thyroid antibodies are up again.  Not sure of the trigger (guessing tooth infection, flu and a cold).  Too bad only celiacs can really control their trigger for a flare-up -- avoid gluten at all costs!  

[squirmingitch]

To get a skin biopsy for dh, you STILL have to do the gluten challenge just like for the blood work. Like cyclinglady says, you need to decide if you require a dyed in the wool medical piece of paper diagnosis or not. 

The bilateral nature of your photos is indicative of dh although other things can present bilaterally but not many. My guess is that you are celiac and you present with dh. DH is extremely sensitive to the tiniest amount of gluten so you will need to be ultra careful or bear the consequences. Those with dh test negative on the blood work 60% of the time. We tend to have fewer, milder to no GI symptoms.

The more often you get glutened, the more likely a dh rash will be to present on larger or multiple areas of your body. My personal opinion is that the recent blistering you have experienced is the rash ramping up in it's presentation and from here on out, you will be more likely to present with the blisters. 

Trust no food you don't prepare yourself. 

[Pocah]

For me, the rash is rather handy. It serves as an indicator that I have exposed myself to gluten. With about 1 teaspoon of wheat based product ( bread etc ) I will come out in a rash somewhere within about six hours or so, and it will be itchy for about 24 hours then disappear. It gets worse the more gluten I consume. But looking on the bright side, it lets me know if I have encountered a "hidden source" of gluten, which is good. Rather this rash than the consequences of prolonged exposure from a hidden source.

[Victoria1234]

1 hour ago, Pocah said:

For me, the rash is rather handy. It serves as an indicator that I have exposed myself to gluten. With about 1 teaspoon of wheat based product ( bread etc ) I will come out in a rash somewhere within about six hours or so, and it will be itchy for about 24 hours then disappear. It gets worse the more gluten I consume. But looking on the bright side, it lets me know if I have encountered a "hidden source" of gluten, which is good. Rather this rash than the consequences of prolonged exposure from a hidden source.

Pocah, how long have you been gluten-free?

i used to get the rash, or the itch at first, on my elbows for the tiniest amount of g. But after 8+ years, it no longer happens! I ate corn flakes twice, as breading, not checking the ingredients. Thought my husband did. He didn't know about malt flavoring, or probably forgot! Anyway, I got c instead. This was very recently! I miss my dh indicator. C is so normal in my life it doesn't stand out.

[F250IDI]

I had the skin biopsy to confirm DH but they still wanted to do a endoscopy to see what was going on inside...they found some cells called Eosinophils that may or may not be related to Celiac and are going to follow up with another scope in eight weeks. Here's what my elbow looked like about eight weeks ago but much improved now.

[cyclinglady]

41 minutes ago, F250IDI said:

I had the skin biopsy to confirm DH but they still wanted to do a endoscopy to see what was going on inside...they found some cells called Eosinophils that may or may not be related to Celiac and are going to follow up with another scope in eight weeks. Here's what my elbow looked like about eight weeks ago but much improved now.

Having experienced autoimmune hives (not sure if celiac-related) daily for the last four months (now controlled by a cocktail of antihistamines, thankfully), I would be super diligent about my gluten-free diet if I had DH.  What do I mean?  Like Squirmingitch indicated -- no eating if you did not prepare it..  The itching can drive you crazy.  In my case, I never knew that you can get hives on the soles of your feet.  

I hope you feel better soon.  

[squirmingitch]

9 hours ago, F250IDI said:

I had the skin biopsy to confirm DH but they still wanted to do a endoscopy to see what was going on inside...they found some cells called Eosinophils that may or may not be related to Celiac and are going to follow up with another scope in eight weeks. Here's what my elbow looked like about eight weeks ago but much improved now.

See:

Open Original Shared Link

Take a copy of that with you or mail it to the doc.

How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.

[len4ita]

Thank you for your replies, everyone! It was very helpful. I don't think I am comfortable with passing the whole gluten introduction diet again and getting that rash. Or, even getting the rash on my face flared up again. It actually might be a good thing I got 'glutened' at that bd party so I could finally make connection with all the symptoms. As I thought back about my 'allergy' rashes I start wondering if it could be related to gluten all those years but no one even suspected. For example, at some point I started getting itchy rash around my knees, spreading down to ankles (front of the legs) in summer. The dermatologist and GP said it is 'sun allergy'. The usual allergic treatments helped for the itch and the patchy scales slowly healed but it flared up on the same place during the summer multiple times. The strange thing is that it never flared up when I went hiking, or walking in the sun in the city (I have extremely low vit D levels and I need to supplement, so it was no-no to stay completely covered no matter the rash...I needed my natural vit D). The rash only appeared after beach visits. At some point I started washing and drying my skin with a towel every time I went out from the sea, the rash still appeared but I was able to control it so it showed up on day 4-5 when vacation was almost over. Then, last summer after I was completely gluten and dairy free for approximately 9-10 months, and I was annoyed of washing my skin each and every time and getting those weird looks on the beach, I stopped doing it. I was prepared with medicine and creams for that rash but guess what - my 'sun allergy' was mysteriously gone. Not a single blister, not a patch of itchy skin, nothing.

Another 'allergy' case of mine is that I found from my own bad experience I got very bad rash from red dyes (in food or cosmetics). If it is food it shows on my face, if it is cosmetics (soaps, perfumes)...whenever I applied it. I am now reading that people with dh should stay away from red dyes. Mere coincidence? I don't know, I am more and more suspicious I could have this DH thing going on for years, if that is DH. I am just annoyed that all the dermatologists I went to during all those years never made connection. No one even suspected. It was the usual path - cortisone creams, pills, etc. At some point cortisone creams were no longer working so they started prescribing some mixtures made in the pharmacy specifically for me with sulfur. That worked like a charm but I couldn't walk around all covered in white cream looking like a mummy (long sleeves in summer here where I live and summer = 35-38 C, is not fun). Then, I tried homeopathy....it worked like a charm but of course those rashes kept appearing and disappearing, I was only able to control the itchy skin so I don't scratch, scratch, scratch...looong, long journey! Sorry about my rant...and, one more time thank you everyone who found the time to reply and share your opinion! Much appreciated!

[William Stevens]

I have DH ( confirmed by biopsy test) and went on Dapsone, and had my rash get much better in days. Since the test was $1300, maybe you could just get a script and see if it works. My doc wouldn't do that. Best. Ps been gluten-free for 4yrs and still have the rash.

[knitty kitty]

Celiac Disease causes malabsorption which can lead to vitamin deficiencies.  Many vitamin deficiencies show up as alterations in the skin.  Low levels of vitamins A and D and many of the B vitamins can show up as different types of rashes on different areas of the body.  

Thought you'd like to compare notes:

Open Original Shared Link

Open Original Shared Link