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JenR

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Everything posted by JenR

  1. JenR

    ARCHIVED Gluten Challenge

    JenR replied to JenR's topic in Dermatitis Herpetiformis

    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....
  2. JenR

    ARCHIVED Gluten Challenge

    JenR replied to JenR's topic in Dermatitis Herpetiformis

    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.
  3. JenR

    ARCHIVED Gluten Challenge

    JenR posted a topic in Dermatitis Herpetiformis

    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...
  4. JenR
    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...
  5. JenR
    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!!
  6. JenR
    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...
  7. JenR
    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...
  8. JenR
    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.
  9. JenR
    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?...
  10. JenR
    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.
  11. JenR
    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.
  12. JenR
    Yes!!!!
  13. JenR
    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...
  14. JenR
    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...
  15. JenR
    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.
  16. JenR
    Yes, it is unavoidable because iodine is one of the elements that make up levothyroxine. Both synthetic (ie Synthroid & generic) and animal derived (ie Armour) products contain levothyroxine - T4 replacement, chemically identical to the T4 our thyroids should be making. (Armour also has porcine T3.) The iodine isn't a free ion. If people with a healthy...
  17. JenR
    I don't understand why the iodine in Synthroid is a problem.... synthetic T4 (levothyroxine) is identical to that produced in the human thyroid gland. It's not free iodine - the iodine is an integral part of the levothyroxine molecule. Picture and complete prescribing info are here - Open Original Shared Link
  18. JenR
    Oh, I was planning to go back to a gluten-centric diet about a month before my appointment - I figured if that is really the cause of my rash, it should flare quite nicely I had not read of false negatives with the skin biopsies! I wonder if that is due to taking improper samples, and/or human error in the lab? I'll look up that book!
  19. JenR
    ok, now this is getting really overwhelming feeling again! I am on my 3rd day of what I believe to be gluten free.... so far so good. eliminating iodine though, ugh. Also I'm on Synthroid for Hasimoto's hypothyroidism (about 9 years now) - no good options to that! FWIW, I did the iodine patch test with the strongest iodine solution I could find (still...
  20. JenR
    eatmeat, I have seen the references to iodine but haven't yet figured out how it fits in with celiac/DH. I will have to look into that. Is it possible that for some, the iodine is more the problem than the gluten? So long as I can keep my 3 food groups (butter, chocolate, red wine) I am sure I will be fine! itchy, yeah, I can see the social situations...
  21. JenR
    Thanks for the input - but it's really a matter of opinion and preferences. I'm aware of dapsone's general safety profile. Just trying to figure out if my prior sulfa reaction is a total rule-out for even trying it. Long term, if a dapsone trial improved my rash and confirmed DH/celiac disease, I would definitely go to a gluten-free approach and not stay...
  22. JenR
    itchy, thanks for the encouragement on the diet. Our lifestyle is not such that we eat out a lot - and as the female head-of-household I prepare most of the food my partner and kids eat My partner does cook sometimes but he is supportive of me needing to do this and will do his best to comply with my "rules." I live in a big enough city that there are...
  23. JenR
    Hi all - last time I posted here was over 2 years ago - https://www.celiac.com/gluten-free/index.php?showtopic=53781&st=0&gopid=498699&#entry498699 Little has changed. The rash that used to come and go on my elbows and knees - always symmetrical although one side would start first - migrated to my outer ankles. Right is worse than left...
  24. JenR
    I have seen the list, ravenwood, and I really don't have any of those problems. I do have chronic pain in my thoracic spine and SI joints but with all the research I've done I'm inclined to believe it is spondylitis more than anything I've seen. As for my daughter, based on her initial symptoms (classic Crohn's - blood and mucous in her stool - diapers...
  25. JenR
    Well, the ttg was negative. I can see why one should always run iga with it, but he didn't. So now I don't know what to do. I don't have any real reason to push for more testing - my symptoms aren't any more specific for celiac than they are for a handful of other things, and I don't want to risk alienating my dermatologist. AUGH. At any rate, the...
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