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Does Dh Ever Go Away?


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#1 ItchyAbby

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Posted 21 September 2013 - 09:27 AM

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! :)


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


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#2 ravenwoodglass

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Posted 21 September 2013 - 10:05 AM

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.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 ItchyAbby

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Posted 21 September 2013 - 10:52 AM

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?


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#4 kmag

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Posted 23 September 2013 - 08:59 AM

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.


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#5 foam

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Posted 23 September 2013 - 06:17 PM

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


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#6 w8in4dave

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Posted 23 September 2013 - 06:19 PM

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


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Recovering Gluten Eater 

DX'd June 17th 2013


#7 zamm0

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Posted 26 September 2013 - 07:42 AM

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.


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#8 ItchyAbby

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Posted 30 September 2013 - 07:20 AM

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


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#9 mendylou

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Posted 12 October 2013 - 02:47 PM

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.


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#10 ItchyAbby

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Posted 29 October 2013 - 10:39 AM

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....?


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#11 ItchyAbby

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Posted 29 October 2013 - 10:40 AM

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.


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#12 squirmingitch

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Posted 30 October 2013 - 05:49 AM

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.


  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 ItchyAbby

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Posted 30 October 2013 - 12:16 PM

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!)


  • 1

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#14 mendylou

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Posted 30 October 2013 - 02:39 PM

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.


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#15 ItchyAbby

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Posted 02 November 2013 - 02:58 PM

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.


  • 1

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.



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