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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    To answer your 1st question ~~~ I don't know HOW the biopsy can be negative when we have the antibodies under our skin making us crazy with the itch but it is when you are gluten free. I do understand what you are saying & have wondered the same myself. Never the less, it is a fact. 2nd question ~~~ NO, it is NOT a definitive indicator that you are...
  2. squirmingitch
    In 2 months I will have been strict gluten free for 3 years. I have dermatitis herpetiformis, the skin presentation of celiac disease (for those of you who don't know me). I have good news to report. I am 5'1" and celiac disease had me down to 93 (at times 90) pounds. After going gluten free I would weigh myself & get depressed that I was not gaining...
  3. squirmingitch
    Do you have a gluten free household or is it shared, meaning your family eats gluten but you do not? ABSOLUTELY, you can have a negative biopsy result if you are gluten free!!!!!! For a biopsy to be correct, you MUST be eating a gluten diet for around 2 months, a couple slices of gluten bread per day. And I will add about the biopsy, that it is not like...
  4. squirmingitch
    I'm hooked! I can't get enough of them. These brownies are so delicious you won't believe it. Your friends & family who eat gluten won't believe these are gluten free. Simply amazing. Perfect flavor, perfect texture. You'll not find a hint of grit or gummy in these brownies. Krusteaz Gluten Free Double Chocolate Brownie Mix Open Original Shared Link
  5. squirmingitch
    Also, read this link: https://www.celiac.com/forums/topic/108804-to-anyone-looking-to-get-a-dx-of-dh-a-skin-biopsy/
  6. squirmingitch
    If you want to get tested for celiac disease then you MUST continue eating a full gluten diet until all testing is finished & the results are in just in case they want to retest something. You asked how itchy dh is...... DH is insanely itchy, dh is called the suicidal itch, dh is so itchy you can not get to sleep & it keeps you awake all night...
  7. squirmingitch
    We haven't heard from JaneWhoLovesRain in years now so I imagine she won't see your post. As far as how long the Dapsone takes to give you some relief; I have never been on it (allergic to sulfa drugs) but from what others say it should start giving you relief in just days. BTW, I've had on the back of both knees. In fact, I had it there long before...
  8. squirmingitch
    You state you do not fully understand what the medical doctors explained to you yet you claim dh & celiac are different things. Huh.
  9. squirmingitch
    I'm so sorry. It's harder than hell to get a dx of dh. You have to educate the docs first & most of them don't take to being educated.
  10. squirmingitch
    No, the docs didn't get to see that, only the discolored skin it left behind which now, by this time, has disappeared.
  11. squirmingitch
    Well Georgia_guy, I sure hope you are just over the Fl./Ga. line directly above the "Gateway To Florida" b/c I would drive that 35 miles to the Ga. line to eat at a totally gluten-free restaurant. Or should I say my hubs and I would do that as he is celiac also. How often would we do this? Once a month, perhaps more often. There aren't even any dedicated...
  12. squirmingitch
    When I had my first "all over" outbreak, I got these particular groupings on my lower abdomen directly over where each ovary lies. These were so identical in shape & size that it looked as if I was a human inkblot & had been folded in half to make the same markings on each side. Or like I had matching tattoos. it wigged me out something awful! This...
  13. squirmingitch
    You're right that a hallmark of dh is the symmetry and you have the symmetry but it can still appear on one side & not the other on occasion so don't think that b/c it's not ALWAYS symmetrical that means it isn't dh. Also, while it IS uncanny & mind blowing how it can echo on each side, the echo isn't ALWAYS identical in proportion. However, boy oh...
  14. squirmingitch

    ARCHIVED Pizza

    squirmingitch replied to bartfull's topic in Gluten-Free Restaurants

    Woooooooooooo Hoooooooooooooo Barty! I'm doing happy jumping jacks for you!
  15. squirmingitch
    I forgot to answer one of your questions. Can dh present in places on your body that it has not presented before? ABSOLUTELY! DH can be aggravated by NSAID's. tylenol seems to be the least aggravating but Advil, Nuprin & all the rest are to be avoided. DH is sensitive to iodine intake & it can cause or worsen a flare. A low iodine diet can...
  16. squirmingitch
    Cheryl, I am so sorry this is happening to you & you have been frustrated for so long. I'm afraid I'm about to give you worse news --- News that you don't want to hear being that you want an official dx so badly. And I'm sorry I'm so late seeing your post. I usually prowl the dh forum so didn't catch this since it wasn't posted there. Geez, where...
  17. squirmingitch
    I have no idea what it is but it sure doesn't sound like dh. It's a mystery to me.
  18. squirmingitch
    I think we all know a host of people who have AI diseases, I know I certainly do. AI disease seems to be rampant. I can only hope it's not going to take 20 years before it's in use.
  19. squirmingitch
    University of Bristol press release 9/3/14 Read the article: Open Original Shared Link
  20. squirmingitch
    I'm sorry but for an accurate biopsy result, you have to be actively eating gluten right up until the biopsy.
  21. squirmingitch
    Since you haven't been truly & wholly gluten-free, then this would apply to you even though it says "new celiacs". Open Original Shared Link And these: Open Original Shared Link Plus a full thyroid panel. Your derm may not do these test & instead refer you back to your doc for testing of those items. Make sure the derm or your doc maintain...
  22. squirmingitch
    Early morning here & I just did a quick Google to find gluten-free dining in the UK. These are good reads. Make sure to read this first one completely --- you'll pick up great tips from it. Open Original Shared Link How about this? Cool! When the owner has celiac disease you know you've found a winner of a place to eat because they "get" it! Open...
  23. squirmingitch
    You're very welcome. As far as the inquiries on the products..... be aware you will probably get a # saying they don't use or add any gluten ingredients but will not say it's gluten free. That's a CYA statement & most of us go with it if it's from a well known company. It's going to be real hard at first with the travel. Not sure I'd trust Subway...
  24. squirmingitch
    Eating out: Open Original Shared Link Personally, I do not recommend eating out; there are too many chances for cross contamination. It's like playing Russian Roulette unless you can find restaurants that are wholly gluten free. It sounds like you have to travel for your job which can make things sticky. Check about laws covering that. We have the "American...
  25. squirmingitch
    Yes, we do. The official medical stance is that the gluten molecule is too large to pass through skin. Well, we have lesions where the skin has been either scratched off or blisters that have broken & left a raw spot where there is no skin. Furthermore, quite a number of us have experienced reactions from topical gluten -- whether we just have a sensitivity...
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