Dapsone, New to DH side of this fun house

[L.P.]

Thanks everyone.  Looks like I need to stop procrastinating and get a proper diagnosis, although pretty sure it’s DH. Although I have never posted before, this forum has certainly educated me for the last few years.  Thank you.

[Jamminonthe1]

Celiac reaction doesn’t necessarily have a linear reaction. . .in other words, strict diet -could still result in DH exacerbation sadly.  

[Jamminonthe1]

On 2/1/2022 at 8:28 AM, matthew1989 said:

Hey Kevin, I appreciate the response. Yes my doctor has checked me for g6pd, came back negative. I'm glad you ended up figuring it out. My symptoms started at 29, I'm 33 now. DH is new to me. Just had intestinal issues, 3 years into it now the DH. I'm going to start it tonight and see how it goes. I 100% agree with you on the itching. My wife asks me if it feels like poison ivy, "it's worse". No one knows what it's like unless they have DH. Never been so itchy in my life. I can itch till I bleed and the itch is still there! If you don't mind me asking, are you gluten free? And if you are do you still get the rashes? My doc said if I remain gluten free I won't need the drug long term. He did say it may take a while for the skin to heal vs the intestines. Is this true with others that have DH like yourself?

 

Thanks a bunch, have a good day.

Matt

Matt,

Two of my four children have celiac, as do I.  Similarly, I avoid gluten at all costs.  We cook a lot at home and carefully eat out infrequently.  I am gluten free essentially.  I never consume it on purpose.  It seems clear through the years that occasional outbreaks will occur despite my best efforts at dietary compliance.  I oftentimes don’t take dapsone, and sometimes can avoid it for weeks if not months.  Nonetheless, I have it on hand, I and take it when outbreaks occur.  It usually halts within a few days of daily dosing.  
 

Have you seen results from the doses you started?  Hopefully you will get past this.

 

Kevin

On 2/1/2022 at 8:28 AM, matthew1989 said:

Hey Kevin, I appreciate the response. Yes my doctor has checked me for g6pd, came back negative. I'm glad you ended up figuring it out. My symptoms started at 29, I'm 33 now. DH is new to me. Just had intestinal issues, 3 years into it now the DH. I'm going to start it tonight and see how it goes. I 100% agree with you on the itching. My wife asks me if it feels like poison ivy, "it's worse". No one knows what it's like unless they have DH. Never been so itchy in my life. I can itch till I bleed and the itch is still there! If you don't mind me asking, are you gluten free? And if you are do you still get the rashes? My doc said if I remain gluten free I won't need the drug long term. He did say it may take a while for the skin to heal vs the intestines. Is this true with others that have DH like yourself?

 

Thanks a bunch, have a good day.

Matt

Matt,

Two of my four children have celiac, as do I.  Similarly, I avoid gluten at all costs.  We cook a lot at home and carefully eat out infrequently.  I am gluten free essentially.  I never consume it on purpose.  It seems clear through the years that occasional outbreaks will occur despite my best efforts at dietary compliance.  I oftentimes don’t take dapsone, and sometimes can avoid it for weeks if not months.  Nonetheless, I have it on hand, I and take it when outbreaks occur.  It usually halts within a few days of daily dosing.  
 

Have you seen results from the doses you started?  Hopefully you will get past this.

 

Kevin

[Wheatwacked]

Some facts I've found regarding DH. Could explain two things: why some are sensitive to iodine and some get DH. I'll find the sources again if somebody wants but there isn't much. I've never had DH but have had shingles and poison ivy. 

In the days of President Benjamin Harris (1888) it was found that iodine exasperates DH. For a while it was used as the diagnostic. Our bodies need Selenium together with Iodine. Selenium is absorbed in the small intestine so can be affected by Celiac Disease. The major food sources of selenium in the American diet are breads, grains, meat, poultry, fish, and eggs. Most patients with DH are deficient in Selenium. Adult RDA for selenium is 55 mcg and upper limit RDA is 400 mcg. It takes 100 cups (2,300 grams) of avocado to equal 100% DV (55 mcg) of selenium. An ounce of Brazil nuts has 544 mcg.

In a 5 week double blind study supplementing 200 mcg a day it did raise the selenium level, but there was no clinical change. Five weeks in the life of a recovering Celiac Disease patient is a blink of the eye. Even Dapsone takes 12 weeks.

Quote

The major food sources of selenium in the American diet are breads, grains, meat, poultry, fish, and eggs [7].  https://ods.od.nih.gov/factsheets/Selenium-HealthProfessional/

Quote

A study investigating selenium in whole blood, plasma, and white blood cells in patients with biopsy-confirmed celiac disease on gluten-free diet demonstrated significantly lower concentrations of selenium than controls.   https://glutenfreeworks.com/blog/2017/07/03/understanding-and-treating-selenium-deficiency-in-celiac-disease/

https://pubmed.ncbi.nlm.nih.gov/19034261/#:~:text=Selenium deficiency is a risk,and increase of mucosal damage.

[trents]

1 hour ago, Jamminonthe1 said:

Celiac reaction doesn’t necessarily have a linear reaction. . .in other words, strict diet -could still result in DH exacerbation sadly.  

Would you explain in more detail what you mean by that?

[Jamminonthe1]

On 2/3/2022 at 11:28 PM, trents said:

Would you explain in more detail what you mean by that?

Not sure if I can, but I’ll try.  This is anecdotal mostly.  The reactions in the gut, or skin are complex.  Eosinophil migration and things like this are autoimmune in nature, which is generally an enigma, even to health professionals.  There are many variables, and similarly, outbreaks vary in intensity and duration.  I don’t believe a measured amount of gluten consumption will result in a consistent reaction across subjects.  Likewise, I believe reactions can occur in a particularly gluten-free environment-especially the DH type reactions. That’s what I believe.  Celiac Sprue is a peculiar disorder.  I’ve had dermatitis outbreaks in the certain absence of gluten, and my skin has been clear other times when I definitely accidentally consumed gluten.  These facts have been true for years in my case.  
 

[trents]

But are you certain this is DH?

[Jamminonthe1]

12 hours ago, trents said:

But are you certain this is DH?

Yeup