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Dapsone & Children

Lola B

By Lola B
in Dermatitis Herpetiformis

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Lola B Rookie
Lola B
Posted

I'm wondering if anyone has children that have taken Dapsone, and if so, could you please share your experience. My 12 year old daughter has been initially diagnosed with DH - we're waiting on a second biopsy - and the doctor recommended Dapsone, in addition to going gluten free. Some of the side effects are a bit frightening and I'm on the fence as to whether or not to try this drug. My daughter has DH in all of the typical places, as well as her face. Being 12, she wants the rash GONE - right NOW. I understand her embarrassment, but I want to be sure that whatever we do has no lasting long term repercussions.

Thanks!

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    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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