Coping with DH

[Ctrain]

Great idea!

Here's some of mine:

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-05-31at100910PM.png (emerging)

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-05-31at100910PM.png#!oZZ3QQcurrentZZhttp%3A%2F%2Fs1023.photobucket.com%2Falbums%2Faf355%2Fpinkgiraffe5%2F%3Faction%3Dview%26current%3DScreenShot2012-05-31at101025PM.png (older part of rash)

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-06-17at55008PM.png (this is what it looks like when it's 'inflamed')

http://s1023.photobucket.com/albums/af355/pinkgiraffe5/?action=view&current=ScreenShot2012-06-17at55008PM.png#!oZZ2QQcurrentZZhttp%3A%2F%2Fs1023.photobucket.com%2Falbums%2Faf355%2Fpinkgiraffe5%2F%3Faction%3Dview%26current%3DScreenShot2012-06-17at54924PM.png (deflated and healing. sorry about the quality)

Brief history: I went gluten free Feb. '12 in an attempt to help relieve my GI 'issues'. Through the process I have discovered that being gluten-free has resolved *many* seemingly unrelated symptoms for me. I developed this rash after my first exposure to gluten (while gluten-free, approx. March '12). I get the rash in 3 different areas - it seems to be symmetrical. Responds well to low iodine and gluten-free.

I am not formally diagnosed as I am still searching for a competent doctor. I've got a lead on one (yay!) and plan to get the genetic testing done sometime in the near future.

Edited to add associated symptoms: the rash is *extremely* itchy - wakes me up! It tends to appear all at once - like a volcano eruption. Triggers that I am aware of: gluten, gluten cc, iodine, nighttime, hot water and hot weather.

Hey Aerial,

My rash looks almost exactly like yours. There is no question in my mind that we have the same rash.

I can also identify with the EXTREMELY itchy thing that wakes you up. And the volcano eruption description. Hot water really gets me, and hot steam (like with cooking) the hot water too but not as much. Sweating definitely makes it more pronounced (which I do a lot of in the summer).

I haven't been diagnosed as gluten intolerant or DH or anything. The rash has responded well to oral steroids and sometimes antihistamines.

I've never had any gluten symptoms before this. Definitely no GI problems at all. I've been mostly gluten free for about 10 days, and the rash has not gotten better. However, there have been fewer "eruptions". Besides that though, I don't feel any better... like sometimes people say they feel great when the stop eating gluten. Hasn't done a thing for me.

Interested to talk to you more

[dani nero]

Hey Aerial,

My rash looks almost exactly like yours. There is no question in my mind that we have the same rash.

I can also identify with the EXTREMELY itchy thing that wakes you up. And the volcano eruption description. Hot water really gets me, and hot steam (like with cooking) the hot water too but not as much. Sweating definitely makes it more pronounced (which I do a lot of in the summer).

I haven't been diagnosed as gluten intolerant or DH or anything. The rash has responded well to oral steroids and sometimes antihistamines.

I've never had any gluten symptoms before this. Definitely no GI problems at all. I've been mostly gluten free for about 10 days, and the rash has not gotten better. However, there have been fewer "eruptions". Besides that though, I don't feel any better... like sometimes people say they feel great when the stop eating gluten. Hasn't done a thing for me.

Interested to talk to you more

A lot of people with DH are also really sensitive to iodine and and salicylates, which can continue to cause DH flares even when you're gluten-free. Try going low iodine (meaning no iodized salt or salt-water fish), and limit foods as well as beauty products containing high amounts of Open Original Shared Link

[IrishHeart]

I've never had any gluten symptoms before this. Definitely no GI problems at all. I've been mostly gluten free for about 10 days, and the rash has not gotten better. However, there have been fewer "eruptions". Besides that though, I don't feel any better... like sometimes people say they feel great when the stop eating gluten. Hasn't done a thing for me.

DH takes a while to respond to the gluten free diet. 10 days is not very long, hon. IF it is DH, it takes a LOT longer for the skin manifestation of Celiac to resolve.

Dr. Green writes: "DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a substantial amount of time to erase years of IgA buildup in the skin."

Many people do not have overt GI symptoms, but the itching rash is their main one.

[Ctrain]

DH takes a while to respond to the gluten free diet. 10 days is not very long, hon. IF it is DH, it takes a LOT longer for the skin manifestation of Celiac to resolve.

Dr. Green writes: "DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a

[IrishHeart]

Well the question becomes, then, what should I do?

From your description of those triggers, it could well be a contact allergy and NOT DH.

To know if it is DH (and therefore, Celiac Disease) you need to be ingesting gluten and have a biopsy of the area around the lesions.

Open Original Shared Link

(But that is a separate discussion from the topic of the photo bank. )

[squirmingitch]

And you have to have been ingesting gluten for at least 2 months at the rate of the equivalent of 4 slices of bread per day EVEN for a biopsy of the rash for testing for dh. Even then there is a 37% false negative rate on the biopsy.

[Ninja]

Hey Aerial,

My rash looks almost exactly like yours. There is no question in my mind that we have the same rash.

I can also identify with the EXTREMELY itchy thing that wakes you up. And the volcano eruption description. Hot water really gets me, and hot steam (like with cooking) the hot water too but not as much. Sweating definitely makes it more pronounced (which I do a lot of in the summer).

I haven't been diagnosed as gluten intolerant or DH or anything. The rash has responded well to oral steroids and sometimes antihistamines.

I've never had any gluten symptoms before this. Definitely no GI problems at all. I've been mostly gluten free for about 10 days, and the rash has not gotten better. However, there have been fewer "eruptions". Besides that though, I don't feel any better... like sometimes people say they feel great when the stop eating gluten. Hasn't done a thing for me.

Interested to talk to you more

Hi Ctrain –

This rash is very new for me and it seems to vary a little bit every time it shows up (I'm getting more "blisters" now).

How was your rash after you stopped the oral steroids? Some people say that antihistamines help *a little* and others say it makes no difference (from what I've read anyhow). Antihistamines specifically target the IgE antibodies and DH is characterized by IgA deposits in the skin – so I am not quite sure why antihistamines help some people... maybe having part of the immune system suppressed helps mediate it slightly?

DH is usually *very* sensitive to gluten and gluten cross-contamination (cc) – shared pb jars, butter, jelly, etc. Watch out for the toaster – even that small amount of gluten can cause a reaction. Pots, pans, colanders, the shelving in your kitchen. Nothing to be paranoid about, but it is good to be aware of all the ways you can be cc'd (which can delay healing!).

Keep reading and researching – the Newbie Info 101 thread by IrishHeart is very very good, go check it out (it's pinned in the coping with celiac section)! Here's a very comprehensive list of symptoms as there are plenty more than just GI: Open Original Shared Link

Many many people who have DH do not have other overt GI symptoms. Be patient, DH takes a long time to heal! Mine takes weeks to go away after I have been cc'd/glutened and I am on the mild end of the spectrum!

Feel free to PM me if you have any other questions or just want to talk more.

Edit to add: Going low-iodine has helped me tremendously (with the DH) – that may be something to look into as well if you still have symptoms.

[squirmingitch]

Oh, and Ctrain, if you want to get a biopsy of the dh then if you have been using topical steroid creams or taking steroid pills anytime 2 moths prior to the biopsy then the biopsy will turn up negative.

[Ninja]

Well the question becomes, then, what should I do?

I'm pretty certain that gluten does cause an inflammatory response... but it's very possible that this is only because my immune system has become super-inflamed overall, so that an allergen sends it into overdrive.

Inflammation is verrryyy common in Celiac and other autoimmune diseases.

Most advise a three month trial of gluten-free and then a gluten challenge if you want to go the elimination diet route. Otherwise, as Squirmingitch pointed out, you must be consuming the equivalent of 4 slices of bread a day for 3 months before the skin biopsy... but there is a pretty high false negative rate.

[squirmingitch]

AND cleiacs with dh tend to test neg. on the celiac panel blood work PLUS if you get an endoscopy the damage is generally much patchier than with non dh celiacs. Sooooo simply put --- DH is a BEAR!

[Ctrain]

Thank you for all of the input guys!

Indeed, it really seems like you can't win with DH

There's no reliable way to get a diagnosis, and if you want to try you've got to be eating gluten + you mustn't have used steroids in months!? Everyone's looks different, it comes and goes on its own, and it's one of the itchiest extant skin conditions. Wow.

Even the notion of never eating bread, or drinking beer, or eating pasta... alone... that's about the toughest pill anyone should have to swallow. But then the uncertainty is even worse!

So do you guys think it would prove anything if I went right back to eating gluten again? As in a massive gluten-fest with all the good stuff? Normally, I eat about 2lbs of wheat per day in the form of bread and pasta and cereals. Should going back to that cause a reaction? or must I wait a couple of months to be sure about that as well?

I guess what I'm asking is, where should I go from here?

[Ctrain]

Hi Ctrain

[IrishHeart]

I guess what I'm asking is, where should I go from here?

Hon, the original poster wanted the thread to be about photos showing what DH looks like and the conversation has gone way off topic. In fairness to her, we need to remain on topic.

Please search for information in the DH section or converse more with Aerial or other members in private messages.

Okay? okay!

[Ctrain]

Hon, the original poster wanted the thread to be about photos showing what DH looks like and the conversation has gone way off topic. In fairness to her, we need to remain on topic.

Please search for information in the DH section or converse more with Aerial or other members in private messages.

Okay? okay!

Haha, yes of course!

Now, about those photos...