Does Dh Ever Go Away?

[ItchyAbby]

I would really like to hear from some folks for whom their DH went "away" or cleared up, or very nearly did so. I understand that it may show up from time to time, what with getting cc'd occasionally or other sensitivities. I just really want to hear some the individual stories of DH and how you all got "through" it or live with it.

 

It may be that I could use a little hope. Lately, I have just started thinking that the rash will be something that I live with forever. It's not nearly as bad as it was but it's still migrating all over my torso, sometimes nearly disappearing, only to spread again. I have not been rash free in months. The itch is not the crazy making itch anymore, and I no longer get blisters, big or small, so there's that. It's not getting worse (which it had been, rapidly, for the first 6 months of this year).

 

But I also realized that maybe the folks for whom it has cleared may not come here anymore!

[ravenwoodglass]

My DH did clear up completely. It did take awhile and I found I had to be really strict with the diet and I also eliminated iodine. I made sure that all my toiletries and shampoos were gluten free and used a free and clear detergent.

The first year or two into the diet a DH outbreak was the first indication that I had been glutened. Within hours of exposure I would feel the rash starting. After those first couple years the time from accidental exposure got longer and longer. It is now my last symptom, if I break out at all, and the rash is a single tiny spot.

[ItchyAbby]

My DH did clear up completely. It did take awhile and I found I had to be really strict with the diet and I also eliminated iodine. I made sure that all my toiletries and shampoos were gluten free and used a free and clear detergent.

The first year or two into the diet a DH outbreak was the first indication that I had been glutened. Within hours of exposure I would feel the rash starting. After those first couple years the time from accidental exposure got longer and longer. It is now my last symptom, if I break out at all, and the rash is a single tiny spot.

Thank you! This is good to hear. I've done all these things (gluten free since June 1st, 2013, low idione since July 15, 2013 and changed out all my soaps and detergents) and it feels like I am on the right track. It's just slow going and some days I am so sick of it. It would be great to get to the point where it's just a dot or two - that's how it all started!

 

I also wanted to ask: how long did you stay low iodine? And if you break out even a little now, do you cut back on iodine at all?

[kmag]

Hi Abby,

 

I've had a rash for about 3.5 years now and have been gluten free for 2.5, low iodine for a little over one year.  My skin seems very sensitive to the amount of iodine I eat, and I have occasionally gotten to a really great point of healing and clearing before managing to muck it all up by going on holiday or something.  Of course, then it's like being back at almost square one again for the longest time.

 

As far as I can tell you, it does seem to have an ebb and flow that sometimes seems to not correspond to anything you are doing/eating.  It really is the most frustrating thing I have experienced.  It's still early days for you, but it sounds like you are really responding well to the changes you've made.  Don't lose hope.  Keep up what you are doing because it should work, even if there is no clear timeline (it's different for each one of us).  For myself, I've been thinking about trying hypnosis to help stop scratching and picking at my skin.  I can see that I'll be covered in scars at the end of this.  If I was ever vain, this has really helped me become a more humble human being.

[foam]

I've been getting smashed by the rash/sores for 20 years, I don't know if it'll ever totally clear up and I've been strictly gluten free for 4 years. But granted I have other problems that have developed that also cause the same symptoms. Bulk antihistamine use keeps me 90% clear

[w8in4dave]

Ohhh I hate this thread!! I just started my rash a few months ago!! I hate to read 20 years with a rash!! 

[zamm0]

To provide a bit of balance I was diagnoses Coeliac/Celiac Sep 2012 and have had the rash. TBH it pre-dated the diagnosis in a mild form by about 18 months. Anyway, I would say my DH has practically vanished as of 2 months ago. One thing I will say - there are triggers other than gluten IMO e.g. I have a suspicion central heating isn't good for it, and I *know* sweaty sports clothes definitely aggravate it.

[ItchyAbby]

Thanks for all the replies, everyone. It helps to see the range of experiences with this thing.

[mendylou]

I would really like to hear from some folks for whom their DH went "away" or cleared up, or very nearly did so. I understand that it may show up from time to time, what with getting cc'd occasionally or other sensitivities. I just really want to hear some the individual stories of DH and how you all got "through" it or live with it.

 

It may be that I could use a little hope. Lately, I have just started thinking that the rash will be something that I live with forever. It's not nearly as bad as it was but it's still migrating all over my torso, sometimes nearly disappearing, only to spread again. I have not been rash free in months. The itch is not the crazy making itch anymore, and I no longer get blisters, big or small, so there's that. It's not getting worse (which it had been, rapidly, for the first 6 months of this year).

 

But I also realized that maybe the folks for whom it has cleared may not come here anymore!

I have been gluten free for 3 yrs.  My DH is much better than it used to be.  Just when my skin seems to be drying & clearing up it seems as if I have a new break out.

[ItchyAbby]

Hi Abby,

 

I've had a rash for about 3.5 years now and have been gluten free for 2.5, low iodine for a little over one year.  My skin seems very sensitive to the amount of iodine I eat, and I have occasionally gotten to a really great point of healing and clearing before managing to muck it all up by going on holiday or something.  Of course, then it's like being back at almost square one again for the longest time.

 

As far as I can tell you, it does seem to have an ebb and flow that sometimes seems to not correspond to anything you are doing/eating.  It really is the most frustrating thing I have experienced.  It's still early days for you, but it sounds like you are really responding well to the changes you've made.  Don't lose hope.  Keep up what you are doing because it should work, even if there is no clear timeline (it's different for each one of us).  For myself, I've been thinking about trying hypnosis to help stop scratching and picking at my skin.  I can see that I'll be covered in scars at the end of this.  If I was ever vain, this has really helped me become a more humble human being.

kmag - I really feel like I could have written this response! I was doing great for a while and then ate some cheese and some ice cream and now it is flared up really badly. Gah! So, I am back on strict low iodine and am planning on staying with that until long after the rash clears this time, instead of rushing to trial something when it is just barely cleared. It's going to be hard, I know. And yes, there may not be any correlation at all and that is what is so frustrating. It just comes and goes of it's own accord. But if I stay LI, even after it's cleared maybe I can get a handle on it's natural rhythm.

 

I've been getting smashed by the rash/sores for 20 years, I don't know if it'll ever totally clear up and I've been strictly gluten free for 4 years. But granted I have other problems that have developed that also cause the same symptoms. Bulk antihistamine use keeps me 90% clear

What antihistamine do you take? I was taking Hydroxyzine and it helped me sleep and definitely knocked down the itch, but it left me feeling really lethargic and unmotivated to do much of anything at all during the daytime. I've stopped using it as of last week, and while the rash is now waking me up, I still feel better during the days and can at least be productive.

 

To provide a bit of balance I was diagnoses Coeliac/Celiac Sep 2012 and have had the rash. TBH it pre-dated the diagnosis in a mild form by about 18 months. Anyway, I would say my DH has practically vanished as of 2 months ago. One thing I will say - there are triggers other than gluten IMO e.g. I have a suspicion central heating isn't good for it, and I *know* sweaty sports clothes definitely aggravate it.

Ok, so it took you just under a year. Good to know. It's so hard to be patient! I am wondering if getting sweaty or is making things worse. It's hard to say. I've recently been able to get back to work and my job is quite physical, so I definitely work up a bit of heat. But it makes me happy (my work) so I am loathe to cut back on it again.

 

I have been gluten free for 3 yrs.  My DH is much better than it used to be.  Just when my skin seems to be drying & clearing up it seems as if I have a new break out.

That's exactly how mine is! GRRR! It will flare for a while and heal for a while and just as the last red dot is almost faded, one new itchy dot will show up and 3-5 days later it has spread all over again. So frustrating! But when you say "much better" do you mean that the flares are smaller, fade quicker, or itch less....?

[ItchyAbby]

Ohhh I hate this thread!! I just started my rash a few months ago!! I hate to read 20 years with a rash!! 

Right? Oh this Dh is BAAAD business.

[squirmingitch]

But you guys have to take that post, written by foam, about the 20 years, in context. Foam said they have been getting smashed with the rash for 20 years.

BUT:

ALSO STATED THAT THEY HAVE BEEN STRICT gluten-free FOR 4 YEARS. 

 

So the previous 16 years do not count. Of course you're going to have the rash as long as you aren't strictly gluten-free. Having said that, the fact that foam was having the rash for 16 years before going strict gluten-free could well be the reason foam is still having the rash after 4 years gluten-free. 

 

Abby, the longer I go, the flares are smaller, fade faster & itch less.

[ItchyAbby]

But you guys have to take that post, written by foam, about the 20 years, in context. Foam said they have been getting smashed with the rash for 20 years.

BUT:

ALSO STATED THAT THEY HAVE BEEN STRICT gluten-free FOR 4 YEARS. 

 

So the previous 16 years do not count. Of course you're going to have the rash as long as you aren't strictly gluten-free. Having said that, the fact that foam was having the rash for 16 years before going strict gluten-free could well be the reason foam is still having the rash after 4 years gluten-free. 

 

Abby, the longer I go, the flares are smaller, fade faster & itch less.

Very true, squirmy! I have had the rash for almost 4 years but only been gluten free for 5 months.

 

I am so glad to hear that your flares are getting better and better. There is hope, I know it - sometimes it's hard to remember (like int he middle of the night when I am itchy and tired!)

[mendylou]

kmag - I really feel like I could have written this response! I was doing great for a while and then ate some cheese and some ice cream and now it is flared up really badly. Gah! So, I am back on strict low iodine and am planning on staying with that until long after the rash clears this time, instead of rushing to trial something when it is just barely cleared. It's going to be hard, I know. And yes, there may not be any correlation at all and that is what is so frustrating. It just comes and goes of it's own accord. But if I stay LI, even after it's cleared maybe I can get a handle on it's natural rhythm.

 

What antihistamine do you take? I was taking Hydroxyzine and it helped me sleep and definitely knocked down the itch, but it left me feeling really lethargic and unmotivated to do much of anything at all during the daytime. I've stopped using it as of last week, and while the rash is now waking me up, I still feel better during the days and can at least be productive.

 

Ok, so it took you just under a year. Good to know. It's so hard to be patient! I am wondering if getting sweaty or is making things worse. It's hard to say. I've recently been able to get back to work and my job is quite physical, so I definitely work up a bit of heat. But it makes me happy (my work) so I am loathe to cut back on it again.

 

That's exactly how mine is! GRRR! It will flare for a while and heal for a while and just as the last red dot is almost faded, one new itchy dot will show up and 3-5 days later it has spread all over again. So frustrating! But when you say "much better" do you mean that the flares are smaller, fade quicker, or itch less....?

To answer a few of those questions:

My flares are smaller in area than previously.

They do not really fade faster, they seem to have their own time frame.

I do notice the breakouts do not seem to have as deep craters as they used to.

They do itch less but only if temp is cool.

My worst times for itching are:

At nite when I wake up warm  I sleep in a temp about 62, with only a sheet usually.

If I am in a home environment that feels warm to me.

If I do any kind of activity which causes me to get warm

Summertime warm temps and humid days are really bad for itching.

Clothing that is not soft that rubs against my skin.  

I have not been DH free for over 5 yrs.  Have been gluten free for 3 yrs this Dec.  Have been iodine free to the best of my knowledge for at least 2 yrs.

[ItchyAbby]

mendylou -

The worst time for me is in the middle of the night - I wake up sweaty and itchy and warm, no matter how cool the room is.

[Chrisz1000]

I had a rash on my face since approximately 4 years ago and prior to going gluten free. A butterfly effect red rash which didn't itch until maybe 2 years with the rash when it suddenly started to get redder and brighter and drier it flaked and itched. It seemed to get really bad after a pie and peas and a pint of lager on my lunch break

 

I've now been gluten free for nearly 8 months and the rash is still there but is much, much lighter in shade. Its a barely noticable rosey cheek type of colour. It flares up in heat or with excercise, but never to the extent when I was consuming gluten.

 

I'm hoping from reading all of the above posts, that it will eventually disappear.

[kmarie82]

My DH went away within a couple weeks of going gluten-free in June. My evil future FIL put wheat flour in my foods several times about a month later and DH came back with a vengeance. In September, I began dapsone and it cleared up perfectly. At the end of my first month, I couldn't afford the second box. Two weeks later I was CC'd. I got the second box and it began to clear again right away. This past week I was CC'd several days in a row. The rash is worse than ever and my doctor says since it's back, he won't prescribe any more dapsone.

I just want this gone. I can't wear a bra or long pants. My nipples and hands are bloody. The spots on the backs of my legs now look as though something has chewed on me.

I'm as strictly gluten-free as I know and can afford, and it makes me so depressed when I read this might just get worse or that it might have other triggers.

It's been great to see the success stories as well. Gives me a little hope where so often I feel there is none.

[GF Lover]

You really need to be 100% gluten free.  You don't actually have to buy special food.  You have to eat cleanly and prepare your own meals.  Have you read the Newbie 101 thread yet?  We can most likely help you clean up your diet and help you avoid cc issues.

 

Colleen

[JustCricket]

I had a rash on my face since approximately 4 years ago and prior to going gluten free. A butterfly effect red rash which didn't itch until maybe 2 years with the rash when it suddenly started to get redder and brighter and drier it flaked and itched. It seemed to get really bad after a pie and peas and a pint of lager on my lunch break

 

I've now been gluten free for nearly 8 months and the rash is still there but is much, much lighter in shade. Its a barely noticable rosey cheek type of colour. It flares up in heat or with excercise, but never to the extent when I was consuming gluten.

 

I'm hoping from reading all of the above posts, that it will eventually disappear.

 

 

What do you mean, "butterfly effect?" Where is the rash appearing, exactly?

Edit: I'm going to include this link, because I'm not sure when I'll get back to this thread, and I'd hate for you to wait for an answer to why I responded as I did. It's because Lupus has a characteristic butterfly rash across the face, and if you have Lupus, I hope you'll be able to get treatment, ASAP.

Open Original Shared Link

[mendylou]

I would really like to hear from some folks for whom their DH went "away" or cleared up, or very nearly did so. I understand that it may show up from time to time, what with getting cc'd occasionally or other sensitivities. I just really want to hear some the individual stories of DH and how you all got "through" it or live with it.

 

It may be that I could use a little hope. Lately, I have just started thinking that the rash will be something that I live with forever. It's not nearly as bad as it was but it's still migrating all over my torso, sometimes nearly disappearing, only to spread again. I have not been rash free in months. The itch is not the crazy making itch anymore, and I no longer get blisters, big or small, so there's that. It's not getting worse (which it had been, rapidly, for the first 6 months of this year).

 

But I also realized that maybe the folks for whom it has cleared may not come here anymore!

I have been gluten free for 3 yrs, I have not been DH clear for at least 7 yrs.  It is not as severe as it used to be, but I have never been DH free.  Just when I think it is clearing up I have another eruption even though I can not connect it to any specific food item.  I feel I must be getting glutened unknowingly or come in contact w/iodine which I know will worsen the situation. I have probably accumulated the antibodies under my skin for a lifetime so it will probably take a second lifetime for me to be rid of them.  I have had skin conditions my entire life and did not make the connection until 3 yrs ago.  I am 61 and remember going to the doctor w/head lesions when I was in high school

[Chrisz1000]

What do you mean, "butterfly effect?" Where is the rash appearing, exactly?

Edit: I'm going to include this link, because I'm not sure when I'll get back to this thread, and I'd hate for you to wait for an answer to why I responded as I did. It's because Lupus has a characteristic butterfly rash across the face, and if you have Lupus, I hope you'll be able to get treatment, ASAP.

Open Original Shared Link

 

JustCricket, thanks for the reply! And my apologies for not getting back to you. I took a break from work over November in an effort to recuperate from a very trying year and so I haven't been in front of a computer until this week.

 

So butterfly effect is a mistype, sorry - butterfly effect is a dominoe effect type phenomena, not a symptom! I did mean to say it is a butterfly shaped pattern just like it says on the Lupus page you provided. The other symptoms I still suffer are:

Fatigue

Headaches, memory loss

So not all of the typical Lupus  symptoms afflict me but I will be mentioning this to my Gastro consultant on Friday. So thanks!

 

On the DH subject I have noticed that, having taken 3 weeks off work, the DH did subside across my face significantly. On returning to work it has come back quite strong again (but not as strong as when I was on Gluten).

 

So... there may be a link to something at my office or something caused by work (stress?). This is for me personally.

[squirmingitch]

Stress would be my guess.

[ItchyAbby]

I second the stress guess. Even small amounts of stress appear to affect my DH.

[Chrisz1000]

Wow - although its pretty depressing its also very good to hear that you guys also have DH flare ups with stress. I have a fairly intense (at times) occupation and it must be aggravating me. I guess I need a new career in something more soothing

 

Like I say... I got a Dr appointment on Friday so I'll get it mentioned. Thanks again!

[squirmingitch]

Anytime! YVW.