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Does This Look Like Dh To You?


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25 replies to this topic

#16 pricklypear1971

 
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Posted 12 September 2012 - 12:37 PM

Ice packs. Others have used Walgreen's benzocaine.

And a shot of tequila doesn't hurt, either.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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#17 squirmingitch

 
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Posted 12 September 2012 - 01:08 PM

The steroids help but the minute you go off them it's worse than ever. You have to get off them & get through the hell & then it won't be as bad. Also, the steroids will make tests negative for 2, maybe 3 months.

Good luck with the new derm.
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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.

 


#18 jmb002

 
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Posted 17 September 2012 - 05:44 PM

Well I can't believe it but the doctor took one look at my elbows, hips, legs, and other various parts and said I believe you have dermatitis herpetiformis. You could have knocked me over with a feather. I had told the PA that is what I thought it was and she didn't think so, so she had the doctor look too! Glad he did. I am starting on dapsone in the morning with the hopes of going gluten free once I am able to get the celiac panel drawn in a couple of weeks. Thanks to everyone here that provided me with advice, it helped greatly!
Jenn
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#19 pricklypear1971

 
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Posted 17 September 2012 - 06:01 PM

Well, yay!

Hope the dapsone works and you can proceed with testing.

Do they really think 2 weeks off steroids is enough time?
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#20 jmb002

 
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Posted 18 September 2012 - 03:50 AM

That is what the doctor said. I am going to try and give it at least a month, but we will see how the dapsone therapy goes. I am anxious to start it this morning.....I understand people with DH see a dramatic improvement in symptoms in just a couple of days.
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#21 squirmingitch

 
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Posted 18 September 2012 - 05:21 AM

But ppl with dh often test neg. on the celiac blood panel --- add to that the steroids......

But I am happy as heck that the doc looked & WOW! he actually recognized it. Why didn't he do a skin biopsy? A positive skin biopsy of dh IS a dx of celiac.
  • 0

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.

 


#22 pricklypear1971

 
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Posted 18 September 2012 - 06:05 AM

But ppl with dh often test neg. on the celiac blood panel --- add to that the steroids......

But I am happy as heck that the doc looked & WOW! he actually recognized it. Why didn't he do a skin biopsy? A positive skin biopsy of dh IS a dx of celiac.


I would assume (and you know what they say about that) a biopsy on steroids would be the same as blood work/endoscopy???

Maybe take it when you come off dapsone (but then you'd be gluten-free....)?? Sigh.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#23 squirmingitch

 
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Posted 18 September 2012 - 06:22 AM

Yes, the biopsy on or recently having quit steriods will be the same as blood work/endoscopy.Posted Image
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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.

 


#24 eatmeat4good

 
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Posted 18 September 2012 - 02:26 PM

I hope the Dapsone works for you. Are they going to do blood tests in 2 weeks? You should be monitored by blood tests to be sure you don't get anemic. I had great relief from Dapsone and then a terrible reaction so I couldn't take it anymore. Just be aware of what to watch for with side effects. Many become anemic. Some have no problem taking it. You will know very soon which one you are. So happy the Dr. recognized your DH!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#25 jmb002

 
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Posted 19 September 2012 - 09:11 AM

The plan was to do a celiac panel in a couple of weeks. I am not sure why he didn't do a biopsy, but my suspicion is that he didn't have time. I was schedule to see the PA whom emphatically claimed it was hives and I just needed to go back on the steroids and suck it up. I was pretty upset about it and was ready to walk out. I told her I wanted the doctor to look at it and she grabbed him out of another room to come have a look. He took one look at biopsy results from other doctor and my skin and said it was DH. At this point I feel good about the diagnosis as that is what I believed it was all along, but thought if I could have the blood work confirmation as well it would be nice. I guess if I go in a couple of weeks for blood work and it comes back negative I will just go gluten free anyway. I definitely believe that it is DH. I have been on dapsone for 2 days now and am seeing slight improvements in the rash and my overall itchiness has really gone down. He said I should see marked improvement in 4 days and if not call him, so we will see.

This illness is EXTREMELY frustrating! I completely understand why people self diagnose and do what they have to to make themselves feel better! At one point during my conversation with the PA I was in tears and had to apologize later for being such a (insert nasty word).

Thanks for the advice and all of the information! I took all the information I printed from this website to my doctor's appointment. The doctor said my case was "different" looking so had several PA's come in and look at it. Maybe that will help some other poor sucker who is itching and scratching themselves to death!
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#26 eatmeat4good

 
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Posted 19 September 2012 - 12:08 PM

You are absolutely right it will help someone else. There were many times I sat there in the dermatologists office crying and saying that my migraines were connected to the face sores...and my "fibromyalgia" is worse when the sores are there. And I would say "These sores are burning my brain." They would just shake their head and tell the PA who was standing there wanting to help, "She is a skin picker. We call it neurotic excoriation." Then he would turn to me and say, "You see how you are scarring your skin?" and walk out of the room. I was angry because I knew he was wrong but I couldn't explain it. None of it made sense until you look at what Celiac is and what it does. Then it all made sense. My sores didn't look like classical DH either. I'm so glad he brought a few PA's in to look at yours. You probably saved a lot of lives and spared a lot of people misery by letting them see the way your DH presents. Thank God that Dr. recognized your DH.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates




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