Dapsone ,iodine, And Dh

[selbro]

I was recently diagnosed with DH And Celiac Disease.

Have been gluten free for about 3 weeks.

Dermatologist prescribed 50 mg Dapsone.Indicated he would keep me on it for life.

Stated I was much more likely to take 2 pills per day than be able to totally avoid gluten for the rest of my life.

My itching has stopped. Haven't got any new sores or lesions.

My skin is still flaking and peeling.Everything seems to be improving.

I was taking 2 iodoral per day before the diagnosis.

I assume I can't ever take it again.

How much do I have to worry about iodine consumption?Will I ever be able to take small doses, such as those found in multivitamins?

I have read on this board and elsewhere that Dapsone is a harsh drug with some risks.Perhaps something you wouldn't want to be taking for the rest of your life.

What do I need to watch for and be concerned about.

I've noticed no problems for the 2 weeks I've taken Dapsone.

I am scheduled for a CBC and liver tests after 2 months.

Thanks for any responses.

I'm still at the stage where questions come to me quicker than answers.

[eatmeat4good]

I've read that Dapsone can cause anemia...usually blood tests are done to watch for it in the beginning of treatment. If you feel weakness, fatigue or muscle problems certainly let your Dr. know. I was on it for two weeks and had a horrible reaction...little red hot pinpoint like rash all over...it lasted several days. I stopped Dapsone immediately. I'm one of those who can't take that medication. You can google the risks of Dapsone and it will tell you what to watch for...that was how I learned the pinpoint red rash was a serious sort of reaction. But some people can take Dapsone just fine. However, your Dr. really wasn't fair with you by telling you he would keep you on Dapsone the rest of your life. Celiac DH is very serious and Dapsone only controls the rash...if you continue to ingest gluten, you are still doing damage to your body. People with DH are more prone to the cancers associated with Celiac, according to Dr. Peter Green in his book Celiac, A Hidden Epidemic. That's awful that your Dr. presented it in a way that you wouldn't be required to give up gluten.

What I have learned in one year with DH is that the rash will react to any trace gluten. Once a rash starts it seems to have to run it's course. Iodine definitely causes the antibodies to stay active. Iodine has to be limited for a while...usually only until the rash heals. Then you should be able to consume iodine again, provided you are not getting any trace gluten. People vary on how long it takes their rash to heal and how long they react when glutened. You will learn how long your reaction is. Iodized salt can be replaced with uniodized salt. Watch out for salty snacks like chips and nuts because you don't know if the salt is iodized or not. Shellfish contain high levels of iodine as does asparagus, egg yolk, some dairy, watch for carageenan in dairy as it is made from a seaweed and therefore contains iodine. It should be just a matter of months to heal the rash...but others take longer...the book cited above states that it can take up to 2 years for the sores to heal even with a strict diet and that the antibodies can remain in the skin up to 10 years.

I am one year gluten free and still have 4 tiny spots that react if I eat too much salt. But if I get gluten...all the places I had the rash before break out all over again and it can be quite maddening to figure out what happened.

You are right to be concerned about the advice you got from your Dr.

Good for you being gluten free.

I don't know how long the iodine will make us react...I'm not there yet to where I can take a multi vitamin with iodine without reacting.

The DH archives here are excellent if you want to read about other's experiences and knowledge of DH. And there are a couple of experts here who will likely reply to you as well. Wish you the best of luck and welcome to the board! Lot of smart helpful people here.

[ravenwoodglass]

Many doctors think the diet is much harder than it is. Not saying it is easy but it can be done. I never took Dapsone and my DH cleared within a couple months. Do avoid iodine and know that the longer you are gluten free the less antibodies will be lurking in your skin. When I was first diagnosed even small amounts of gluten would produce an outbreak within hours. I actually found that helpful as it helped me see how much I was eating was not really as safe as I thought it was. After a couple years gluten free DH rash would be the last of my symptoms to show up rather than the first and now after 9 years even with a severe glutening I only get one or two little bumps rather than large patches of oozing sores.

[selbro]

I think my dermatologist was saying that I couldn't avoid being glutened occasionally and would avoid outbreaks when that happened by staying on dapsone.

Can I tolerate a little more iodine while taking dapsone?

Or is it zero tolerance whether one takes dapsone or not?

Are there quality multivitamins available without iodine designed for people like us? Or will I need to keep taking individual vitamin products?

Does everyone with DH not tolerate salt?

I consume lots of salt.I have low aldosterone and dump sodium quickly.

If I need to reduce salt, then something else will have to give.

Unless the low aldosterone can be linked to celiac somehow.

I have seen adrenal issues linked to celiac disease.

[eatmeat4good]

You can use uniodized salt freely.

And you may have to experiment to see if the Dapsone allows you to consume more iodine.

I use a multi vitamin only..without minerals..the minerals I supplement separately.

Prickly Pear found a multi without iodine and it was posted here recently. If you do a search you may come up with it or you can PM her and find out the brand.

the goal is not zero iodine...just minimixing it. Some people are more sensitive to iodine than others. Some people heal their DH just by going gluten free. I couldn't.