DH while on Dapsone?

[disgruntledceliac]

Hi folks,

I started having obvious celiac symptoms (stomach, brain fog, energy issues) and DH outbreaks a decade ago. Didn't get diagnosed until recently. Went gluten free a couple years ago, although there was probably some cross-contamination up until six months ago. Now I have my own fridge, cooking space, oven. I also eat a very clean diet -- no processed foods, just stuff that I can verify is gluten free. I also avoid soy and milk ... they seem to cause problems for me.

My specialist put me on Dapsone, and I've taken 100 mg/day for the past two months.

Despite all of this, I've broken out in DH again in the past week. On my face, where it usually appears. I know that it is not unusual for DH to continue popping up for a couple years after going gluten free, but is this usual for someone taking Dapsone? Is there anything I can do, besides perservering in my gluten free ways and biding my time until it goes away? As you all know, it is so disheartening, not to mention painful. (And not unlike others, it has taken a toll on my social life. I'm a borderline hermit these days!)

Longtime reader of the celiac.com forums. I appreciate hearing about all of your experiences.

[squirmingitch]

I need to ask you to clarify some things okay? When you were put on the Dapsone, did you start right out on 100mg day? When you went on the Dapsone, how long did it take before the rash resolved? Is this the first time since being on Dapsone that the rash has come back?

[disgruntledceliac]

Thanks for the reply. To answer your questions, yes, I've been on 100mg/day for the full two months. When I began taking Dapsone there wasn't much rash on my face (where it is now) -- it was mostly on my scalp -- and the little I had cleared up within a week or so. This is the first time that the rash has returned to my face since beginning Dapsone. (There's also some bumps on my scalp again.)

I didn't include this info in the original post, but it might be helpful for your information. A few weekends ago I ate some chips that were labelled gluten free, but after eating them I started feeling the telltale burning itch on my face that led to my current outbreak. I looked up info on the chips and while they claim to be gluten free, they may contain soy and definitely contain vegetable oil. (I avoid soy because of assorted problems.) Around the same time I tried re-introducing dairy to my diet, which I tried for a couple weeks. Between the iodine content and the casein this probably aggravated the situation. (I've since stopped consuming dairy.)

 

 

 

[Metoo]

Hello.  I wanted to tell you I seem to be having the same problem...although I am on a lower does between 25-50 mg depending how bad I am broke out.  

 

I first cleared on 50mg in 1 week.  Now though i seem to be breaking out while on Dapsone from too much salt or iodine.  I ate some gluten free summer sausage last week and now my chest is covered in DH.   

Its miserable!  So darn itchy!  I barely slept last night.  I am considering going back to my doctor because of this.  I just don’t know how normal this is, or if DH looses its effectiveness to some extent the longer you take it.  

 

 

[squirmingitch]

I would say to both of you to nix the iodine for 2 weeks. Look up low iodine diet on thyca.org. The other thing is - and you 're not going to like this - BUT

NOTHING labeled gluten free. Eat fresh fruits & veggies, & meat & dried beans you sort, wash & cook yourselves & later, the dairy can be added back in. NO EATING OUT!!!!! Nothing from a bag!!!!! You want a snack? Apple slices, carrots, banana, fruits or even some leftover meat.

If you continue to have problems after about 2 weeks of that, then you may need to have the Dapsone dose upped.

You guys need to know that dh is ultra sensitive to the tiniest amount of gluten. One reason I am not a fan of people taking Dapsone is because it does control the rash & people are lulled into a false sense of security. You may be eating stuff you are sensitive to but you don't know it b/c the Dapsone is masking the reaction. 

MOST of us with dh can't eat like celiacs who do not have dh; at least not in the beginning & maybe for years & years. Depends on the individual but enough of us have learned the hard way that we have to go to the maximum extreme to get relief.

[plumbago]

Hello,

I can tell you a couple of things, the first of which is based on personal experience. I sometimes have an unsightly rough patch on my nose that I have been struggling with for a number of years. If I bring up the topic at the dermatologist, they tend to put me on either an anti-fungal or a steroid cream, both of which after a while I stop using. The steroid of course does "work." My skin clears up. And now with the anti-fungal, this was more interesting. It seems that whatever it was on my nose did kind of clear up, but then a patch of...something (I don't know what) would crop up just outside of the area where I had put the anti-fungal cream. That made me laugh. Next, I assumed it might have been caused by not washing my hair enough (I have dandruff and used Head & Shoulders) so I'd experiment and it would (sort of) seem that my nose was not as bad on the day after I washed my hair. But the most dramatic improvement by far has occurred since I switched from Head & Shoulders to a bar shampoo (which I do in order to get organic ingredients but more important to cut down on plastic waste). Rough patch is simply gone with no trace of it. The older I get the more I am tending to use personal care products that try very hard to be organic.

Second, I read the adverse effects of dapsone, and see that exfoliative dermatitis is one of them, as is photosensitivity. Have you ruled out adverse effects?

Plumbago

[disgruntledceliac]

4 hours ago, squirmingitch said:

I would say to both of you to nix the iodine for 2 weeks. Look up low iodine diet on thyca.org. The other thing is - and you 're not going to like this - BUT

NOTHING labeled gluten free. Eat fresh fruits & veggies, & meat & dried beans you sort, wash & cook yourselves & later, the dairy can be added back in. NO EATING OUT!!!!! Nothing from a bag!!!!! You want a snack? Apple slices, carrots, banana, fruits or even some leftover meat.

If you continue to have problems after about 2 weeks of that, then you may need to have the Dapsone dose upped.

You guys need to know that dh is ultra sensitive to the tiniest amount of gluten. One reason I am not a fan of people taking Dapsone is because it does control the rash & people are lulled into a false sense of security. You may be eating stuff you are sensitive to but you don't know it b/c the Dapsone is masking the reaction. 

MOST of us with dh can't eat like celiacs who do not have dh; at least not in the beginning & maybe for years & years. Depends on the individual but enough of us have learned the hard way that we have to go to the maximum extreme to get relief.

Yeah, I think this is the answer here. I've essentially adopted a paleo diet to see if that works. Fingers crossed.

Thanks to all for your responses.

[squirmingitch]

I'm not sure you have to do paleo but that's up to you. I had to end up doing the Fasano gluten cross contamination elimination diet. AND I could not do the Boost shakes & stuff like that because of the carrageenan (iodine!). Also, for some reason, the Gatorade was a no go & rice was a no go BUT I did do instant coffee. A girl's gotta have something right?

I still am not eating traditional packaged gluten-free stuff. I've been able to add Smuckers natural PB & Barney Butter Almond flour.

[disgruntledceliac]

I wasn't aware of the Fasano diet prior to the thread. Thanks for the link. That's generally what I'm following at this point, so it is good to see that there's some science behind it.

Thanks all for your insights and comments. I appreciate it.