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squirmingitch last won the day on May 21

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About squirmingitch

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    Gardening, birds, bees, butterflies and nature in general. Nature is a genius!
    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. It means you were very damaged. Please read the Newbie 101 at the top of the Coping forum.
  2. squirmingitch

    DH and related complications

    A couple things I forgot to mention earlier...... pressure points ~~~ dh likes to hit pressure points. that can be clothing seams, bras in general, where your socks hug your calves, stuff like that. Loose clothing helps!!!! Going barefoot helps if you're in a climate where you can do that. DH also likes to hit scars/scar tissue. I have a hysterectomy scar that got strafed time & time & time again. Other various & sundry scars I've gotten over a lifetime got hit often as well. Also, there was a good period of time there where I could not wear a band aid without my skin reacting like mad. It would get all red, puffy & itchy/burning where the band aid was & many times would then develop dh in that area. I think part of it is that your skin is just so ridiculously hypersensitive & those antibodies are just rearing to go attack anything at all. Just be aware of those kinds of things is all. I took my earrings out & didn't wear them for a couple years b/c they were even irritating me.
  3. squirmingitch

    Another could this be DH question

    I hear ya! It's like being stuck between a rock & a hard spot. The worst problem, I think, with eating gluten for people who do have dh is that MORE antibodies are going to get deposited under your skin that aren't necessarily going to affect you right away but that you know will affect you somewhere down the line. Like a time bomb just ticking away & you never know when it's going to go off.
  4. squirmingitch

    DH and related complications

    OOF! Where to start with you...... OK, let's see, triggers & aggravators..... NSAID's but if you MUST take something, it seems Tylenol is the least offender. Go to thyca.org for a low iodine diet (leave off the gluten foods too!), steroids --- generally a monstrous rash backlash after quitting them. Do NOT eat out - it isn't worth the risk and if you do it anyway then you're asking for the suffering you will get. On the iodine, you don't have to be low iodine forever -- it's just to get the rash to calm down. Stress. Gluten of course & I mean the teeniest, tiniest bit! Heat & humidity & sweat. Do not kiss any gluten eaters until they have done a very good job of brushing their teeth!!!! Feed your pets gluten-free pet food. Why? Because pets lick stuff, themselves, us, whatever. We touch & then get it in our mouths if we goof & don't wash. Or the dog gets exuberant & hauls off & gives you big sloppy, wet kiss when you're laughing & OOPS! The rash can & will flare whether you're eating gluten free or not UNTIL all the antibodies are out from under the skin. How long does that take? We are all individuals & it can take weeks or years or years & years. As to topical iodine & the patch test to dx. I did a boatload of research on that years ago & it's bunk. There have been medical studies done on that & it has been determined the iodine on the skin patch test doesn't indicate anything as far a dh goes. You can believe me or research it yourself. If you dig on this dh forum, you can find where I laid it all out some years ago - around 2011 or 2012. the test referenced in the earlier posted link is from 1980. Doesn't make it invalid but no testing since backs up the data. As far as pools go.... I have read where people report problems after being in pools. Seems from what I read, most all were talking about outdoor pools. I have also read people saying that about the ocean or salt water swimming. I've not found any studies that addressed that issue. I have read people with dh also reporting that these things did not bother them or make the rash flare. I suspect but can't prove, it's an individual thing & quite possibly, the chlorine or iodine or salt water dries out the skin which would tend to make the skin more "gitzy" & apt to "act out". I could easily see that happening. Try this for a while: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40
  5. squirmingitch

    Another could this be DH question

    You really need to research Dapsone & it's side effects before you go running for that route. Also there are regular tests that need to be done while you are on Dapsone. Your best bet for a dh dx is a dh biopsy but just like the blood tests, you have to have been eating gluten everyday for the prior 12 weeks and the biopsy needs to be taken from a clear spot adjacent to an active lesion not ON a lesion. 60% of those with dh test negative on the celiac serum panel.
  6. I think it's really important for you to get the DGP tests. Some people only test positive on those. We have one member in particular who only ever tests positive on the DGP's. Since you were eating gluten free in 2016 when you had the endoscopy, then it would be invalid as to determining if you have celiac disease or not. It is telling that your nephew has celiac & yes, you're right, it's genetic. If you get the DGP tests & they are negative & get an endoscopy & that is negative then do give the gluten free diet a nice long, serious try. I think you already know that. Make sure you don't get cross contaminated.
  7. squirmingitch

    Dapsone reaction

    One of the side effects of Dapsone is a skin rash. See: https://www.mayoclinic.org/drugs-supplements/dapsone-oral-route/side-effects/drg-20063327 Numerous people with dh who have taken Dapsone have had unacceptable side effects from taking Dapsone & some of those were rash.
  8. I agree with cyclinglady!
  9. squirmingitch

    Products (makeup?) to cover DH?

    If you aren't too embarrassed, go to your local drug store (CVS, Walgreens) & ask one of the ladies in that department to help you pick one out that is appropriate to your skin tone. Or you could go to somewhere like Sephora & do the same but Sephora is just going to be more expensive & not any better.
  10. Good deal. Keep eating gluten every day until then.
  11. Flourless Peanut Butter Chocolate Chip Mini Blender Muffins https://www.averiecooks.com/flourless-peanut-butter-chocolate-chip-mini-blender-muffins/# Toasty Coconut Macaroons https://www.foodnetwork.com/recipes/alton-brown/toasty-coconut-macaroons-recipe-1912139
  12. squirmingitch

    Biopsy today

    The one taken adjacent is the only one done properly for a dh biopsy.
  13. squirmingitch

    Biopsy today

    If you are a vegetarian & adamantly opposed to changing that then yes, you're going to have a harder row to hoe than most of us & a nutritionist versed in celiac would be a great idea. Did she take the biopsy ON a lesion or did she take it on clear skin ADJACENT to an active lesion?
  14. squirmingitch

    Products (makeup?) to cover DH?

    You won't need cosmetic surgery for the spots as they will completely fade away into nothingness with time and no, I've never heard of anyone getting minor cosmetic surgery for dh. I agree with RMJ about using some concealer.