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Dermatitis Herpetiformis Question


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21 replies to this topic

#16 pricklypear1971

 
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Posted 04 May 2013 - 08:59 AM

I saw my PCP.
The itchy buttock rash was gone when I saw him.
He thinks the rash would last longer if was Dermatitis Herpetiformis and not come and go so fast.

Completely untrue, in my experience, at the beginning.

Beware - when it decides to stay, it's hellish.

That said, it wouldn't disappear daily. It would stay a week or two, vanish. Then 6 months, vanish. Then, it didn't go away....
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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 04 May 2013 - 10:01 AM

Ditto what Prickly said.


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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 Deaminated Marcus

 
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Posted 04 May 2013 - 10:25 AM

Thank you pricklypear and squirmingitch,

 

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.


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#19 pricklypear1971

 
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Posted 04 May 2013 - 10:36 AM

Thank you pricklypear and squirmingitch,

Yes I scratched it in the evening and then it's gone the next day for a for a week or longer.


You know, it doesn't have to be DH to be a gluten related rash?

There are hundreds of gluten reactions - this may be yours. It just may not be DH.
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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!

#20 squirmingitch

 
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Posted 04 May 2013 - 04:46 PM

Well said Prickly. 

It can be soooooo hard to get a dx of celiac disease --- you know that Marcus, you've been reading on here long enough to know that. It is 10x harder to get a dx by way of dh. And if you don't get a dx of dh then they aren't going to dx you based on any other rash.

I'm going to say this one more time & then I will not harp on it again Marcus. You went gluten-free before for 2 years & you were so much better off. If gluten hurts you then don't eat it. Period.

Now, I will not say that again & I will support whatever decision you make & try to help in any way I can.

You could be non celiac gluten intolerant. Still means to stay away from gluten. Research into NCGI is in the infant stages --- who knows what they will find out in the future as far as that goes.


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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.

 


#21 Celiac Mindwarp

 
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Posted 07 May 2013 - 08:38 AM

Hi Marcus

I don't have DH, but following negative blood tests, biopsy and genetic test I have been declared NCGI. I have been strictly gluten-free since September 12, and clean wholefoods, paleoish,dairy free since. January 13. I have just got better and better, with a host of symptoms clearing, including eczema and random rashes. My skin is much softer too.

Just sayin :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#22 sisterlynr

 
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Posted 24 May 2013 - 01:00 AM

Thank you pricklypear and squirmingitch,

 

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.

 

 

Hmmmm, from my personal experience, I've not had anypart of this rash disappear overnight!  Maybe you have a gluten allergy, not DH?  

 

Btw, were you considering doing a biopsy on yourself?  I really don't think that would be a good thing to do.  You were asking about how deep the biopsy needed to be, how large and what type of container to use.  

 

I'm concur with the other ladies . . . eat gluten free and if the rash goes away, don't worry about a biopsy.   Hope all works out for you.


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~





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