My hubs had been having dh but he was sailing down the river of Denial. I knew what he had but he was not willing to admit it. Finally, he could ignore it no longer & had to admit dh was what it was. And for the first several weeks he only went gluten-free but kept the synthroid & iodine. His dh did improve some but well, dh is dh & makes you insane & so that was when he decided to withdraw iodine.
The signs were there for years about celiac but at that time we were not astute enough to pick up on them. We didn't even know what celiac was. He would have D for days followed by C for weeks, off & on it went with periods of "normal" (a relative word) in between. He had rashes on his legs. What brought it all to a head & exposed it was a crushingly, tremendous amount of stress along with cancer for a number of years. Then the rash became well defined as dh & presented on his feet, ankles, calves, thighs, buttocks, hands, fingers & arms with some mild ones on his back.
We already knew I had dh & knew how difficult it is to get an official dx. We discussed, at length, whether he wanted to try to get an official dx (he was gluten light already b/c of me) before going gluten-free. I called all the derms within any reasonable distance & they had no clue about dh & doing a biopsy for it. Since the blood panel for celiac turns up false neg. 60% of the time with dh the decision was made to forego an official dx & go gluten-free. We know what it is. And we don't need anyone's permission to go gluten-free. He had also seen how I was suffering (having it way worse than him) & wanted no part of dh worse than he was already dealing with. Neither of us have had any trouble staying on the gluten-free diet. It's gluten that scares us, not gluten-free.