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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Remember though that the milk is iodine so if you go back to it & get itchy again....... And I will mention that when you see products (topical) that claim "with Vit E!" well, vit E comes from wheat but not all of it does but that's beside the point..... Vit E even though it comes from wheat is in THIS form okay for us in shampoos, lotions, etc.....
  2. squirmingitch
    Oh tinpins, I am SO, SO SORRY! I feel responsible for your outbreak. I was sure we covered the shampoo, lotions, topical products issue. I see I did not. Again, I apologize from the bottom of my heart! Obviously you know now but to lay it out for future readers.... Check ALL topical products you use ~~~ ALL of them for gluten containing ingredients....
  3. squirmingitch
    Yes, better! Still waiting for the ax to fall but feeling better. I can move my shoulder now, not 100% range of motion but a darn sight better than none. Thanks tinpins
  4. squirmingitch
    Super! Long but super! Will read all the way through when I have time. Thanks tinpins!
  5. squirmingitch
    Steph, I will apologize for those references b/c they are not the best I have. I have better. They are all in my bookmarks which I have not organized. It will take me a lot of hunting to find the proper ones. And I'm having a great deal of trouble @ the computer right now. I was messing with the A/C handler & had to get into a contorted, twisted position...
  6. squirmingitch
    Open Original Shared Link 1995 Jun;9(2):371-93. Dermatitis herpetiformis. Open Original Shared Link. Source Dermatology Department, St. Mary's Hospital, London, UK. Abstract Dermatitis herpetiformis (DH) is a relatively rare skin disorder with an estimated incidence of 1:10,000 in the UK. It is characterized by urticarial plaques and blisters on...
  7. squirmingitch
    It's been a while now since I had one of those meltdowns Jyn but I do remember them all too well. I remember having them hit me out of the blue after not having had one for a month & then wham! you're in the store & you just want to slide down to a sitting position & bawl out loud. ((((((JYN)))))))) Your bf sounds like a great guy so keep him...
  8. squirmingitch
  9. squirmingitch
    I'm sure she was on another thread where we talked about it but it never hurts to repeat & remind. Thanks Karen. Iodine can make the dh flare horribly for most of us so you can try going low iodine & see what happens. The low iodine diet can be found @ Open Original Shared Link Of course you will have leave out the gluten foods as thyroid cancer...
  10. squirmingitch
    Jyn, you need to remember that dh can present at any time for 2 yrs. or more even after going strict gluten-free. This is why dh is so vexing. How does one determine if it was food or simply a spontaneous outbreak? This is why my hubs & I will not eat anything that is produced on shared line, will not eat out, will only eat cert. gluten-free foods. This...
  11. squirmingitch
    That's another reason I think ppl should be hesitant to take Dapsone ~~~ it clearly states that the Dapsone itself can cause a rash as a side effect. How is one supposed to know what's Dapsone rash, dh rash or "other" rash when taking Dapsone. And Lord knows we DON'T need any more rash than the dh!!!!!!!!!!!!!!!!!!!!!!!
  12. squirmingitch
  13. squirmingitch
    Just a note here about the coconut oil. I'm not sure...... I read on some sites that coconut is high in iodine thus it follows that coconut flour as well as coconut milk & coconut oil would be high iodine also. Now I'm not sure just how much iodine or just how high & it wasn't a site like thyca.org sooooooo...... For me, I choose not to go for it...
  14. squirmingitch
    I'm so sorry tinpins. I know exactly what you're going through. There are times you just give in & have to focus all your energy towards just getting through the day. This is likely not the last time it will happen either --- unfortunately. I CAN tell you though that it may take time but it DOES get better!!!!!! It really & truly does! Remember...
  15. squirmingitch
    Ah. Thank you. Oh MY! Poor, poor baby!!!!! Okay, for my part I say; absolutely, that could be dh!
  16. squirmingitch
    You're right; it is like learning to walk again. Prickly has a good idea about making your own yogurt from low iodine milk. I have a low iodine milk source thankfully very locally. It's a family owned & run dairy & they pasteurize b /c it's the law but do not homogenize. They grow their own food for the cows & do all the milking, bottling &...
  17. squirmingitch
    Prickly, she said the daughter is doing a gluten challenge but I don't know if it's for testing purposes or for their own knowledge. If it's for testing purposes for a dx then I would say to get to the doc now & see if he will dx her based on response b/c I sure would hate to see that little girl suffer for weeks or months doing a challenge.
  18. squirmingitch
    It is really hard keeping all the food rules straight in your head & even on paper. I know, been there, done that. Hard enough doing just gluten then you have to remember there's this in that food & that in this food & such & such in this other food. I'm sorry your back is giving you fits but happy I saw this & said something or else...
  19. squirmingitch
    Regardless of what each rash is ~~~ it is obvious that if she reacts like that to gluten 20 min. after ingesting it then she definitely has a big problem with gluten. Steroid creams or oral steroids will make a dh biopsy a false negative just so you know.
  20. squirmingitch
    Just a heads up FYI here..... the yogurt is high iodine. Iodine makes the dh go itchy, itchy.
  21. squirmingitch
    I am holding good thoughts for you too. (((((HUGS)))))) I don't know if you're on any thyroid replacement meds b/c of the thyroid cancer but if you are on synthroid or levothyroxine & such then you are getting a certain amount of iodine from them but you can't stop taking them either.
  22. squirmingitch
    Lisa, IF you are getting glutened & therefore getting dh then odds are that your GI issues will not be what you experienced before. When we have dh we tend not to have strong GI issues like say IH or any of the others who do not have dh so it would not be surprising that you're feeling different than before.
  23. squirmingitch
    Okay, wait. I just re-read Lisa's post & apparently she began the steroids after the biopsy. So, that takes us back to whether the biopsy was done correctly or not. And I agree with IH in that you could be allergic to something ~~~ even something you were never allergic to in the past. We can develop allergies out of seemingly nowhere. But I will...
  24. squirmingitch
    If you have been gluten-free for 4 years then you would not present with dh UNLESS you have been getting cc'd or glutened. You can test the rash by seeing if going low iodine makes it go away. If it does then you could be pretty darn sure you have been getting gluten from somewhere. BTW, the steroids will make dh better but the down side is that when the...
  25. squirmingitch
    krystal, Yes, iodine is key. And IMHO you should certainly be actively seeking a dx. This means loading up on gluten & possibly iodine too so you get a nice (did I say nice?) good (did I say good?) outbreak. I can't even believe I'm urging someone to deliberately head for hell as fast as they can!!!! But If it were me, wanting an official dx as badly...
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