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2.5 Years After My First Episode, Dh Returns With A Vengence . . .

weaselfish

By weaselfish
in Dermatitis Herpetiformis

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weaselfish Rookie
weaselfish
Posted

Back in late 2011, I joined this forum after having self-diagnosed my DH / Celiac condition.  Needless to say, I got a wee bit jaded after recovery / healing, backslid, and DH is back with a vengence.  This time bringing intense Edema in my hands, wrists, forearms, feet, ankles, and calves.  Beer was my downfall.  I've been again gluten-free for over 2 weeks, but my DH hasn't peaked yet ( ie, new small lesions still manifesting in a diminishing fashion ). 

 

The Edema I now have drove me to the emergency ward 2 days ago as I didn't know if it was my Kidneys, Liver, or Heart ( I'm 56 years old ).

 

Blood tests for Kidneys, Liver, and Heart came back negative, so it's Celiac.  All I was given was Atarax for itching, no diuretic ( I'm taking Diurex on my own ).  Fluid build-up is scary ( can't even see my right ankle bones ).  This time around DH got my eyes too ( yes, eyeballs itching - used anti-histamine eyedrops as suggested elsewhere here ).

 

The Edema causes me continuous pain and burning let alone the DH nightmare I've once been through.  Still using Vanicream ( moisturizer ),  Witch Hazel for itching, but the Edema is excruciating at times.  As for my eyes, I used Zaditor anti-histamine eyedrops with better-than-average success.

 

Thus, short of a worsening Edema condition, I'm left to Diurex, time, abstention of gluten ( and of course my favorite beer ), and prayers that God will help me heal again.

 

Edema tip:  Use pillows to elevate feet and hands if necessary for daytime rest periods, and night time sleep.  If I come across a " magic bullet " I'll report here.

 

Peace & healing to all, and don't forget:  Be Love,

 

WF

 

.

 

 

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kareng Grand Master
kareng
Posted

What about getting the rash biopsied so you know if it really is DH or something else?  sounds like you had test for lots of things, but not Celiac?

weaselfish Rookie
weaselfish
Posted
  • Author
  On 8/17/2014 at 10:19 PM, kareng said:

What about getting the rash biopsied so you know if it really is DH or something else?  sounds like you had test for lots of things, but not Celiac?

Though I appreciate your input Yum!, please do not insult either my intelligence or perceptive capacity via pointless suggestions.  I went to emergency for Edema, not DH.  The emergency team confirmed my Edema was Celiac related as they have experience with those like me.  Thank you and peace,

 

WF

kareng Grand Master
kareng
Posted
  On 8/17/2014 at 10:26 PM, weaselfish said:

Though I appreciate your input Yum!, please do not insult either my intelligence or perceptive capacity via pointless suggestions. I went to emergency for Edema, not DH. The emergency team confirmed my Edema was Celiac related as they have experience with those like me. Thank you and peace,

WF

Wow! Alrighty then.....

You said you were self-diagnosed with Celiac. I thought, since you were eating or drinking gluten, it would be a good time to get a definitive diagnosis. Sorry. I can see you do not want any suggestions.

Peace

GottaSki Mentor
GottaSki
Posted

I do agree with Karen that biopsies are a good idea since you have active DH lesions.

You seem to not be in need of diagnosis....so as long as your primaries and ER are on board..great.

Unfortunately, your situation is not the norm...we normally see folks that are fighting to be understood by their primaries and ER physicians

IrishHeart Veteran
IrishHeart
Posted
  On 8/17/2014 at 10:26 PM, weaselfish said:

Though I appreciate your input Yum!, please do not insult either my intelligence or perceptive capacity via pointless suggestions.  I went to emergency for Edema, not DH.  The emergency team confirmed my Edema was Celiac related as they have experience with those like me.  Thank you and peace,

 

WF

 

Hi Weasel,

 

I have suffered edema from celiac, but I have never met an ER person yet who knows all the symptoms associated with  C D,

It's unusual for them to even be aware of it. You got lucky. 

 

I did not find Karen's input insulting at all. No need to be upset with her suggestion. :) She makes a good point about biopsying the area since you have active lesions (you call it returning with a vengeance). Many people assume they have DH when in fact it is something else. We can have all kinds of rashes and sores from gluten. I did, but it's not DH.

 

Whatever the case, it appears you have learned a valuable lesson about imbibing in beer. 

 

I'd point you to some excellent G F brews, but I am fearful you might also find my suggestions "pointless and an insult to your intelligence".

 

Instead, I will just say: hope you feel better soon. 

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