JenR

Argh! I thought the biopsy (properly performed) was supposed to be more reliable than an endoscopy in folks with DH??!! I guess I'll just proceed with the normal diet and wait and see....

Nope. No known family history either. I was hoping the rash would return right away - more feeling of causality, you know? If it comes back in a few weeks or so, it will be hard to argue it was the dietary changes. But at any rate I can bring it to the derm and get biopsied.

I went gluten-free for 6 weeks. My rash went away between weeks 2 and 4 (WOW) It was not as severe as some of you here have experienced. The most recent rash was mostly on my outer ankles only. I reintroduced gluten this weekend with beer and pizza (LOL) - so this is the third day of the gluten challenge and no rash so far. I guess I thought that if...

Yeah.... I know. At the time the lead candidate for the rash was psoriasis (I have chronic back/pelvic pain that seems to be an inflammatory condition called spondylitis - one form of spondylitis involves psoriasis.) So that is why he biopsied directly, and just had me do the anti-tTG blood test. He does know about DH and if I wind up going back to him...

Good info, thanks raven! The whole celiac/DH journey certainly does get curiouser & curiouser. I'm thinking I better get 2 different derm appointments close together so if one does the biopsy wrong, maybe the other will get it right. Yikes!!

Pretty amazing, huh?! I'm glad you were able to figure out your issues before you wound up irreversibly ill! Itchy, LOL @ your friends.... you know they mean well!! OK, another confusion/question - talking to a friend with celiac, she said that people with DH may have negative endoscopy but still have celiac & must be gluten-free. I thought endoscopy...

ahhh thanks for clarifying!! good to know! hopefully the local group can give me tips on a derm and/or GI ... am thinking of just going to the guy who is the head of Dermatology at our area medical school; his main interest is bullous diseases (blistering) - and DH falls into that category. your signature says you were diagnosed via an elimination diet...

Thanks for the ideas GFManna! No, I did not have any GI symptoms at all. I will be on the lookout for new symptoms when I re-introduce gluten (I didn't know that could happen!), and will be on it at least a week before I have any more testing.

So I went gluten-free April 23 to see if it helped my rash. After 2 weeks I was discouraged as it didn't seem better. Sometime between 2 and 4 weeks a huge improvement happened... the rash has been in the same location for months, maybe even a year or more (outer ankles) so it's hard to believe it's coincidence. What do you recommend for next steps?...

This is not accurate. Excessive consumption of soy products can be a problem for those with hypothyroidism, but moderate consumption is not. Of course every individual is different so it's always best to listen to your own body.

With whom do you disagree? It's been well established that thyroid meds by their very nature contain iodine as part of the molecular structure of levoxyl/levothyroxine.

Yes!!!!

The levothyroxine in Armour is chemically identical to the synthetic levothyroxine, and to the thyroxine (T4) our bodies make. All three molecules contain iodine as part of their structure. Armour is different than Synthroid for 2 reasons: 1. Made from dessicated pig thyroids instead of in a lab 2. Contains T3 as well as T4. Typical hypothyroidism...

I get that; but T4 replacement meds like Synthroid should not count as consuming "iodine." It's not iodine. It's levothyroxine. It's not the same as, say, iodized salt.... levothyroxine/T4 incorporates the iodine as part of the molecular structure which is chemically identical to the T4 a healthy thyroid produces. I would normally not use wikipedia...

Thyroid meds do not provide iodine. They provide levothyroxine. Normally the thyroid should produce levothyroxine (T4) which requires some iodine. But in hypothyroidism it's not making enough T4 (or in some cases it's not making ANY T4!) - what's needed is a T4 supplement, not an iodine supplement.