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Histamine Levels & Dh ?


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#1 sisterlynr

 
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Posted 25 April 2013 - 06:21 PM

Anyone have information or point me to articles to answer my questions?  I had 2 more biopsies in February taken correctly by Dr. F, head of Dermatology at USF.   He didn't think I would have a positive for DH due no gluten and on Dapsone since Oct/2012.   The biopsy only showed inflammation peri lesion.  Since the rash responded to diet and Dapsone within 3 days, my medical dx is Celiac-DH which was agreed on by 3 of my doctors.

 

I decided in March that I would stop the Dapsone to see if just the gluten-free diet would control the rash as my skin was so much improved.  It took about 10 days and the healing lesions renewed with a vengeance.  My PCP and Rheumatologist told me. . . "Don't stop the Dapsone again!".    :wacko: 

 

My questions (finally)

 

1)  I do much better with taking Benydrl, so does this mean I have too much histamine or not enough?

 

2) Does anyone have dimpling of your skin?  I noticed this when applying lotion after the rash.  Never felt this before the rash became so horrible a year ago.  It feels like the tissue under my skin has separated.  This is all over my body.

 

3)  Has anyone tried a gluten-free, low sugar, non-dairy meal replacement drink?  My PCP gave me the OK to go liquid.  I am disciplined enough to follow a liquid diet.

 

4)  Is there a skin cleansing, either from inside or out that will help speed up the removal of anti-bodies?

 

5)  Dr. F has ordered a new ANA blood analysis before I can have light therapy.  Has anyone had light therapy for DH?  Did it help heal the purple and darkening of skin due to the DH?  

 

Thanks for any help.   :) 

 

 


  • 0

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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#2 pricklypear1971

 
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Posted 25 April 2013 - 06:54 PM

Antihistamines can suppress autoimmune response. That's probably why you experience some relief. It's seen with AI across the board - not just DH. I get some relief from antihistimines.

Your other questions...I can't address. No dimpling for me, unless you're talking about aging and fat - and I do have some of that. Unfortunately....

I didn't have dark scars. My DH was the kind that formed a giant web of scabs. I would gently slough them off when they were soft and wet - as they were ready. The dark discoloration faded within a year.
  • 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!

#3 sisterlynr

 
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Posted 25 April 2013 - 07:18 PM

Thanks PricklyPear.  I had also stopped taking Benedryl.  The past 3 days I have taken it and it does help so I will continue taking it.  I think you have seen my photos, I too have the blanket of lesions.  The scars have lightened somewhat so the fact yours have faded is hope for me.  I don't feel the dimpling is from age or fat.  It isn't visible like cellulite.   :rolleyes: 


  • 0

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~


#4 mamat78

 
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Posted 25 April 2013 - 08:17 PM

I have also read that high doses of b-12 supplement can help with DH symptoms. I am taking 3000mcg per day now...as well as higher dose of vitamin C (2000mcg)

 

I have no idea if any of these things will help but it may be worth a try! I cannot tolerate dapsone so I will have to rely on gluten free if the dx is of DH


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#5 foam

 
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Posted 25 April 2013 - 11:44 PM

I had lumps/blistery things on the back of my neck, shoulders, lower back and sometimes chest for 20 years straight. Turned out I had very high IgE levels and that's what was causing my excessive histmine release.The anti histmine Zyrtec all but cleared them up within days. I'm on Zytrec permanently as long term use of Zyrtec lowers IgE levels, it is working and if I go off Zyrtec for a few days to play a competitive sport now (it makes you slightly drowsy) I don't have anywhere near the problems as I did when my IgE levels were higher. Zyrtecs very safe so it's worth trying at least to give you some relief if nothing else, it also has some interesting side effects which help lower the damage with gut problems. Other than that high Vitamin D levels always helped me get some relief. My scaring lightens just fine with a bit of sunlight the problem always is you don't feel comfortable getting your skin out when it's trashed.


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#6 GottaSki

 
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Posted 26 April 2013 - 12:01 AM

New to this party....SysterLyn.

 

Here is what I know.

 

If Benedryl works -- you have a Histamine issue.....took me an excruciating amount of research to find the following:

 

http://www.allergyuk...Intolerance.pdf

 

Histamine Intolerance is a non-issue with U.S. doctors...I say this because I have the chief allergist of UCSD === who had no idea what i was speaking of except trialing every different antihistamine -- well guess what == Benedryl works great, but then I need to take a nap.  Not conducive to a life or career.

 

It is late here...but saw your post and wanted to welcome you....let us know if you want more info :)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 sisterlynr

 
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Posted 26 April 2013 - 02:13 AM

Thanks for the welcome, Lisa.   :)   I have been on the site for bit of time since my research for 'rash' led me here last year.  I will look at the site you posted.  Isn't it horrible that we have to research to find answers to our symptoms?  

 

I take Singulair for allergies.  I will go online to see the difference between Zrytec and Singulair.  Maybe I will make a switch of allergy medication.  Thanks foam . . .  


  • 0

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~


#8 squirmingitch

 
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Posted 26 April 2013 - 05:07 AM

I get dark spots on the skin where the dh has been but thus far they have all faded in time to be back to normal looking skin. It takes 6 months or more though depending on the severity of the lesions or rash in any given area. 

I wonder if your calling dimpling what I call bumps. I have "uneven" skin --- that's the only way I know to term it. It's like there are little bumps underneath the surface (presently all over my legs from the knee down & my feet) --- I had this on my back but they have calmed down & gone away now. I say this is dh deep, deep under the skin --- small, sometimes even tiny, tiny but there never the less. They will get bigger or return when I get flares.

 

Thanks to pricklypear I am getting some relief from the insane itching by taking Claritin each day. I certainly notice when I forget to take it which I did this morning ---- Off to take my Claritin!


  • 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.

 


#9 pricklypear1971

 
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Posted 26 April 2013 - 05:45 AM

I get dark spots on the skin where the dh has been but thus far they have all faded in time to be back to normal looking skin. It takes 6 months or more though depending on the severity of the lesions or rash in any given area.
I wonder if your calling dimpling what I call bumps. I have "uneven" skin --- that's the only way I know to term it. It's like there are little bumps underneath the surface (presently all over my legs from the knee down & my feet) --- I had this on my back but they have calmed down & gone away now. I say this is dh deep, deep under the skin --- small, sometimes even tiny, tiny but there never the less. They will get bigger or return when I get flares.

Thanks to pricklypear I am getting some relief from the insane itching by taking Claritin each day. I certainly notice when I forget to take it which I did this morning ---- Off to take my Claritin!


Taking antihistamines never helped much for my DH. Perhaps the doxepin dampened it a bit , but I still had an active rash with the usual itching.

They do help if I get whacked with an AI flare and feel like I have the "gluten flu", or "AI flu". Then again, I also have seasonal allergies and if the two collide, look out. I'm taking 1 Claritin/day right now...for months. Allergies are terrible this year. Last tear I took 1/2 a pill every other day for an AI attack. I'd rather be on THAT dose. Ugh.
  • 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!

#10 squirmingitch

 
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Posted 26 April 2013 - 06:14 AM

Let me make myself clear..... the Claritin only helps some with the itching but NOT with dampening down the rash itself. But I do notice some help with the intensity of the itching.


  • 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.

 


#11 pricklypear1971

 
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Posted 26 April 2013 - 06:59 AM

Let me make myself clear..... the Claritin only helps some with the itching but NOT with dampening down the rash itself. But I do notice some help with the intensity of the itching.


I think the doxepin made me so stoned it just didn't register :). That stuff is wicked...ugh.
  • 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!

#12 squirmingitch

 
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Posted 26 April 2013 - 09:26 AM

I can see why it would stone you. Ugggggggg.


  • 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.

 


#13 sisterlynr

 
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Posted 28 April 2013 - 12:09 AM

I get dark spots on the skin where the dh has been but thus far they have all faded in time to be back to normal looking skin. It takes 6 months or more though depending on the severity of the lesions or rash in any given area. 

I wonder if your calling dimpling what I call bumps. I have "uneven" skin --- that's the only way I know to term it. It's like there are little bumps underneath the surface (presently all over my legs from the knee down & my feet) --- I had this on my back but they have calmed down & gone away now. I say this is dh deep, deep under the skin --- small, sometimes even tiny, tiny but there never the less. They will get bigger or return when I get flares.

 

Thanks to pricklypear I am getting some relief from the insane itching by taking Claritin each day. I certainly notice when I forget to take it which I did this morning ---- Off to take my Claritin!

 

 

Yes to the bumps as that is probably a better description.  I don't see them but when I rub lotion or oil into my skin, I feel them.  I feel them everywhere although my legs are not as bad. I understand about the dampening of the itch.  I take Dapsone but only 50 mg a day.  I don't feel 

it is enough, going to talk to my PCP in a couple of weeks about upping the dose.  I don't think this is ever going to be under control. . . I compared Claritin to Singulair and it looked to me about the same benefits.   


  • 0

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~


#14 pricklypear1971

 
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Posted 28 April 2013 - 06:37 AM

Yes to the bumps as that is probably a better description. I don't see them but when I rub lotion or oil into my skin, I feel them. I feel them everywhere although my legs are not as bad. I understand about the dampening of the itch. I take Dapsone but only 50 mg a day. I don't feel
it is enough, going to talk to my PCP in a couple of weeks about upping the dose. I don't think this is ever going to be under control. . . I compared Claritin to Singulair and it looked to me about the same benefits.

Each person responds differently to antihistimines. They are not all "equal" according to your body. Some people respond to an h1, others to a h2 blocker. As far as I can tell, Singulair is neither an h1 or h2 but a different class - as patients combine h1 and h2 meds with Singulair. That doesn't mean it won't work - I just don't tknow if it has the same AI dampening effect (or would help with DH) the way some people feel h1,h2 meds help.

http://chronichives....ug-information/
  • 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!

#15 sisterlynr

 
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Posted 28 April 2013 - 11:03 AM

Thanks for that site PricklyPear.   I looked at a different chart to compare the 2 drugs.  I knew Singulair was a leukotriene inhibitor and found this on the Mayo Clinic site.   Since it keeps my asthma under control, I'll just add Benedryl instead of asking for another prescription drug.  I suppose if leukotriene inhibitors may help atopic dermatitis itch, I may have a double benefit from taking Singulair. 

 

The use of leukotriene inhibitors in treating atopic dermatitis, aspirin-intolerant asthma, and chronic idiopathic urticaria appears promising but has not been studied thoroughly. Leukotriene inhibitors have minimal side effects and are well tolerated in most populations.  ~Mayo Clinic site~


  • 0

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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