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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    No, there is no point in going to the derm. You have already been dx'd with celiac disease so unless you want to go on Dapsone for dh then don't waste your time with the derm. There could be a couple reasons you are turning up with the rash now. 1) You've only been gluten-free for a week --- that's really early in the gluten-free game --- you may have been...
  2. squirmingitch
    Elaine, there are gluten free beers out there. It may take a good while for you to accoustum yourself to them but they are there. They taste like beer to me. LOL! But I was never fond of beer & in fact avoided it as much as possible. Gee, I wonder why? It was because when I drank beer, that was when I would actually get GI issues. Tore my guts UP!!!...
  3. squirmingitch
    It's good to hear from you Elaine. You have been much in my thoughts & I was wondering how you were doing. I'm so sorry it has worked out like this. I wish it had been something else. Question: When you said that after the trial hypo allergenic diet & seeing the deem, you went back to your normal diet. Do you mean you ate gluten? Or do you mean that...
  4. squirmingitch
    It's sometimes very hard to tell from photos but I'm saying it's certainly possible. Considering what else you have said, that adds weight toward the side of dh but there are many skin issues & other rashes associated with celiac disease. However, I'm still going to say it seems like you tip the scales on the side of dh.
  5. squirmingitch
    First you need to make sure all your topical products are gluten free. Normal celiacs will say you don't need to do that but those of us with dh seem to react to topical gluten so make sure shampoos, lotions & such are all gluten free. Also at this point you can go ahead & begin making sure your vitamins & meds, both prescription & OTC are...
  6. squirmingitch
    Get a copy of the blood test when it comes back & post it along with the ranges so we can make sure the full, current celiac panel was done. I wish you had not gotten the shot. Now it's going to be 2 months before you can get a biopsy for dh. And even though it did not help with the itching; you probably will get a lash back from it. Those lash backs...
  7. squirmingitch
    Jennifer, I'm so sorry we're getting back to you so late. By now you've already had your appointment. The best way to get a dx for dh --- and a dx of dh IS a dx of celiac disease --- is to go to a dermatologist & get a skin biopsy for dh. This requires a derm who is experienced in biopsies for dh. This is not any normal biopsy so they have to do it right...
  8. squirmingitch
    I am so glad to hear you will not do the challenge! I can't even express HOW glad. Nothing in this world could make me go through a gluten challenge --- NOTHING! I truly would rather die first. I came close to killing myself with the dh --- no way, no how would I recommend a challenge to anyone who has dh. GottaSki & cyclinglady both were right in their...
  9. squirmingitch
    You need to read this entire thread all the way through & read the links contained in it also. That will tell you what you are asking & about the tests & about why the tests won't work for you now because you are already gluten free. https://www.celiac.com/forums/topic/105888-newbie-feeling-desperate-how-long-before-i-see-improvement/
  10. squirmingitch
    Your question, "How did you get better?" You ride it out. It will take you for a ride you have never experienced in your life & you just hang on. There is no predicting this. There is no pattern to this. You can not know what it will do next nor where it will go next nor what form it will take next. You just hang on tight & stick to the diet ...
  11. squirmingitch
    Aczone IS Dapsone only in topical form. I have never used it so I can't say what's normal.
  12. squirmingitch
    Aveeno = oatmeal. Oatmeal = gluten. Why? Because oats grow alongside wheat, mature at the same time, are harvested at the same time on the same wheat laden equipment & processed on the same gluten laden equipment in the facility. All of this = cross contamination. We can have oats BUT ONLY OATS THAT HAVE BEEN GROWN IN DEDICATED FIELDS FAR FROM WHEAT...
  13. squirmingitch
  14. squirmingitch
    There's no problem with sweet potatoes being high sal unless I remember totally wrong. I can't say about the light therapy b/c I've never done it. I read good & bad & certainly didn't want to risk bad so forgot that notion. Remember, the rash can flare any old time it darn well pleases even long after going gluten free so just make sure you're...
  15. squirmingitch
    Well, I have a little info. for you but not a whole lot. Prickly never used an ND for allergy or food sensitivity testing. The diet the derm put you on is an allergy free elimination diet & then you get to add foods back one by one to see if you react. I might add that you are back on topical steroids again so even if you had a bad flare, any dh biopsy...
  16. squirmingitch
    Well, your photo surely does not reflect that you have a need to loose weight & I love that happy, bright smile. However, celiacs come in all shapes & sizes & is yet another source of frustration for us with the doctors as most of them think you have to be emaciated to be a celiac. You won't be the first to loose weight on the diet! Malabsorption...
  17. squirmingitch
    I'm so sorry Elaine. I had hoped you would get lucky with a derm who knows what's what & at least get some kind of answer or hope of one. And how many times have people been on this forum who have been to the derm & the derm says they made the rash/lesions come by scratching? I don't even want to count. The diet she has you on is ensuring nothing...
  18. squirmingitch
    Goooooooooooooooooooooooooooooooooooooooooooo Abby!!!!!!!!!! What wonderful news from you! I'm so happy! Watch me grin. Congratulations girl!
  19. squirmingitch
    Elaine, I hope you got some kind of answers today. At least something that will help you settle this in your mind & a derm who is knowledgeable.
  20. squirmingitch
    DH is NOT an allergy to gluten nor is celiac disease. DH is the skin presentation of celiac disease not an allergic reaction to gluten. But it would seem to indicate you are getting gluten from somewhere.
  21. squirmingitch
    Yep, I hear you. We pretty much just quit the whole idea of bread. I have one I make in the nuker for my breakfast but the hubs won't touch it & I certainly wouldn't call it a burger bun but I like it for breakfast. I quit on the idea of biscuits period. I made my own even when I was in Jr. High --- nothing gluten-free is EVER going to taste like biscuits...
  22. squirmingitch
    YVW Ted! My poor hubs keeps having dreams where someone offers him something or we're somewhere & food is on platters & he just picks it up & takes a bite & then realizes he just glutened himself. I've only had maybe 2 of those type of dreams. But it is hard to break a habit of not worrying about what you put in your mouth ~~~ we've lived...
  23. squirmingitch
    Hi Ted & welcome to the board! I had horrid pain & not just in my joints. I was getting epidurals in my spine to be able to function. Since going gluten free I have continued to get better & better & better & haven't needed an epidural. This is not an uncommon story for celiacs. Celiac disease affects literally every cell in your body...
  24. squirmingitch
    How about the antibiotic for the H. pylori? Was it gluten free? I also strongly suspect a lab error. Perhaps your test got mixed up with someone else's? A re-test is in order. You mentioned your kids ~~~ kid kisses? Are you kissing them on the cheek where they may have put their gluteny hands? How about the pets? Is their food/meds gluten free?
  25. squirmingitch
    I edited my post above so if you had read it, then please read it again. And if the derm takes a biopsy now, then when it comes back negative you will still not have your answer b/c you won't know if it's a false negative or not. And if the derm does a biopsy now & it comes back negative WILL THE DERM AGREE TO DO ANOTHER BIOPSY AFTER YOU HAVE EATEN...
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