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Histamine Levels & Dh ?

sisterlynr

By sisterlynr
in Dermatitis Herpetiformis

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sisterlynr Explorer
sisterlynr
Posted

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.   :) 

 

 

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pricklypear1971 Community Regular
pricklypear1971
Posted

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.

sisterlynr Explorer
sisterlynr
Posted
  • Author

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: 

mamat78 Apprentice
mamat78
Posted

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

foam Apprentice
foam
Posted

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.

GottaSki Mentor
GottaSki
Posted

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:

 

Open Original Shared Link

 

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 :)

sisterlynr Explorer
sisterlynr
Posted
  • Author

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 . . .  

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squirmingitch Veteran
squirmingitch
Posted

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!

pricklypear1971 Community Regular
pricklypear1971
Posted

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.

squirmingitch Veteran
squirmingitch
Posted

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.

pricklypear1971 Community Regular
pricklypear1971
Posted

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.

squirmingitch Veteran
squirmingitch
Posted

I can see why it would stone you. Ugggggggg.

sisterlynr Explorer
sisterlynr
Posted
  • Author

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.   

pricklypear1971 Community Regular
pricklypear1971
Posted

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.

Open Original Shared Link

sisterlynr Explorer
sisterlynr
Posted
  • Author

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~

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