DHLady

That's horrible! You were diagnosed with Celiac Disease in 2010 but no one told you the only cure is to go gluten-free until now? Sounds like malpractice to me.

Anyway, read around the forum . In the coping section is a Newbie thread that could be helpful.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

My apologies!

From day 1, I knew that the only cure for DH was to go gluten free.

I simply did not want to make the change and took the Dapsone, using it as a band-aid.

It worked like a dream for me!

I have just been prompted to pursue the gluten free diet due to side effects of the Dapsone.

Thanks for you thoughts.

Not to sound like a grizzly old veteran, I have a hard time understanding why you were taking dapsone and not gluten-free. When you were diagnosed with DH...you had regular blood tests and had your o2 levels checked but never heard that you needed to be gluten free?

My apologies!

Yes, I knew from day 1 that the only cure would be to go gluten free.

I chose to take the Dapsone, which acted as a band-aid.

I simply was not ready to make the diet change and still am not, honestly.

It sucks!

I am a newbie to the gluten-free diet.  (1/1/14) I see that I should also pursue a low iodine and low salicylate diet as well.

I was diagnosed with DH in 2010. 

I too, am skeptical whether I truly am suffering from DH.

My break outs usually are bilateral in location; developing on both knees, elbows, arm pits, forehead, sides of my neck, mid-back, buttocks and most recently my fingers and genital area tissues.  Ouch!

The unbelievable burning itch right away was what sent me to the Dr. in the first place to begin my guinea pig days on the road to diagnosis.

A biopsy was done and lots of blood work every couple of months for over a year.

Steriod creams intensified the burning rashes.

I tried one Rx, which did not help at all.  I can't recall the name of it right now.

After testing 50 - 150 mg of Dapsone daily; my Dermatologist and I found a comfortable does of 100 mg per day.

That dose worked like a dream for me!  It controlled all break-outs.

Intense stress did cause flare-ups while on the Rx.

If I forgot the take a dose, I would experience symptoms by the end of the day.

My Derm. was always worried about lethargy and neuropathy, which I never suffered from.

My iron level was low, but not dangerously low for a woman of my age.

The gold ticket that spurred getting off the Dapsone was my oxygen saturation level.

As soon as I began taking Dapsone, my O2 was 90-92. 

Prior to taking Dapsone, I have no idea what my O2 level was.

My primary physician and Derm. decided that the Dapsone was causing damge to my red blood cells; which in turn were not sufficiently carrying oxygen to tissues in my body.

A blood gas draw on 12/17/13 confirmed that my oxygen level was even worse . . . around 86.

I have no asthma or breathing difficulties at all.

So, as of 1/1/14; I quit taking Dapsone cold turkey and began a gluten-free diet. 

After reading posts on this forum, I see that I have a long road ahead of me.

This moring, I woke up with horrendous burning rashes in all of the areas described above.

My only hope in this miserable lifestyle change is that I truly am symptom free one day.

Any and all scientific findings, support or advice are welcome!

Hi there!

I was diagnosed with DH in the fall of 2010.

I just woke up with it one day.

I have been on 100 mg of Dapsone daily, since that time.  It controlled the painful rashes beautifully.

As of 1/1/14; I have stopped taking Dapsone (cold turkey) and began a gluten-free diet.

I do not suffer any of the GI symptoms associated with Celiac.

My dermatologist & primary care physician told me I had to make the change, as my red blood cells were damaged resuling in a low oxygen level as a result of taking the medication.

I know I have a long painful road ahead of me; which is why I prolonged changing my diet and getting off the Rx.

Any suggestions like the above would be greatly appreciated!  Eating on the go, meal ideas, safe costmetics, soaps and lotions, etc.

I am a very busy homemaker, wife and mother of three very active children.

I am not taking any other Rx medications and do not have any other known allergies.

I do take a daily low dose aspirin.

Looking for support in tackling this lifestyle change.