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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    I'm so sorry!!!!! I wish I had some magic cure for you but sadly I don't. I hope it ends soon. You just have to wait it out. (((HUGS)))
  2. squirmingitch
    Maybe. But your best bet is when you have fresh, new lesions. And try your best not to scratch them before you get the biopsy b/c scratching quickly destroys the pattern the lab will be looking for.
  3. squirmingitch
    Ice packs won't hurt the rash at all & if it gives you relief then great! Soaking in a hot epsom salts bath helped me too. Here's a link too: https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/
  4. squirmingitch
    You would have to wait for it to flare up again. When the bumps come up & are itching like the dickens. 99% of derms don't know if you use steroid creams it will invalidate the biopsy just as they don't know you must be eating a full gluten diet until the time of the biopsy, just as they almost always take the biopsy ON the lesion. There are more pitfalls...
  5. squirmingitch
    It's very, very rare to get a dx after going gluten-free. It has happened but 99.9% of the time it's someone who has been going to the same doc for forever & both trying to figure out what was causing the rash & finally ending up being dx'd by response to the gluten-free diet. This of course, can take years!!!! In my case it was a total, absolute...
  6. squirmingitch
    With dh, we tend not to have the strong GI symptoms b/c the antibodies deposit under our skin. This is also why we turn up a false negative on blood work 60% of the time. It's harder for us to get a positive on the endoscopy also. The best way for a person with dh to get a dx is a skin biopsy. This has to be done correctly. It has to be taken from clear skin...
  7. squirmingitch
    Excellent. Thank you Karen for posting this.
  8. squirmingitch
    Thank you so much for sharing this T.H. We must be ever vigilant!
  9. squirmingitch
    You're so welcome! Just be extra careful not to get cc'd. It can take ages for the antibodies to get out of the skin & every time you get cc'd it puts more of them under your skin. You want to heal, not take steps backward.
  10. squirmingitch
    Welcome lanhamae! You pretty much spelled it all out in your post. You have been reading & paying attention & it shows! Good for you! You answered your own questions. And you know what happens when you eat gluten. Okay, yes, there are MANY symptoms of celiac disease as well as Non celiac gluten intolerance. Repeatedly we hear migraines, joint...
  11. squirmingitch
    ((((HUGS))))
  12. squirmingitch
    The iodine in the shrimp could have done it. Or, is it possible he has a shellfish allergy??????????
  13. squirmingitch
    No problem! I'm happy to validate. I know the feeling of needing someone else to say or think the same thing. Who doesn't?
  14. squirmingitch
    From my own experience of taking oral steroids, I would get the backlash anywhere from 3 days to a week after quitting the steroid. I don't know the amount of time for others as I don't remember if they stated a time frame for a backlash. And I have no idea how long a steroid shot would remain in your system. But I can offer this: We moved about 400 miles...
  15. squirmingitch
    It's really hard to say what it is. And there is still the possibility it's dh. DH can come & go even if one is eating gluten. If it is dh, then inevitably one day it will come with a vengeance but there is no telling when that day will come. It could be years or it could be weeks. Or maybe he doesn't have dh at all & isn't celiac. I know it's frustrating...
  16. squirmingitch
    Oh you're so welcome! Good thinking to test the nickel! Now you can tell them to take that dx & shove it! They did the dh biopsy wrong. It has to be taken on clear skin adjacent to an active lesion. And if there's any way possible, keep him from scratching there before hand. What the lab is looking for is very easily destroyed with scratching. I...
  17. squirmingitch
    Low risk does not mean NO risk. If you're high risk you can have celiac, if you're low risk you can have celiac. 90% of the docs out there STILL think celiac is a RARE disease. We get this kind of stuff all the time. Docs just don't understand that 1 in 133 people have celiac disease. 90% of people don't know they have celiac disease & part of that is...
  18. squirmingitch
    YES! It does get easier, I promise! Really it does. Personally, I wouldn't eat anything I don't make myself. Carry food with you. No way, no how, that i would eat anything I don't make. Too much chance of cross contamination. Family & friends may mean well but they don't know all the rules. Hey, it's hard enough for us to get all the rules down pat ...
  19. squirmingitch
    It sounds so much like dh to me. The bilateral "echo" is a real clue. The type of itching you describe, that it goes haywire (as if i doesn't go haywire all the time anyway (smirk)), the way it presents, how you react when you eat gluten. It all adds up. Okay, you don't have to stay with the low iodine diet. Most people find they can do it for 2 weeks &...
  20. squirmingitch
    Chris, please don't give up. I know it's rough. Stay with your support group ~~~ they will help you & you need the support. When you see your GI, make sure to tell him you had been gluten-free for so many months & only went back to eating gluten about 13 days before the tests. Your lab bloods don't mean a thing since they are invalidated so...
  21. squirmingitch
    Ahhhh, I see. Thanks greenbeanie for the info.. I agree with you about the biomarker for NCGI & will even go so far as to say that one day we will have a way to dx celiac disease without the need for glutening oneself. Oh, won't those be happy days? Happy, happy days! Well, once again we're back to that saying --- if it makes you sick, don't eat it...
  22. squirmingitch
    greenbeanie, so your daughter is dx'd from positive blood & endoscopy. You are negative for genes. Has your daughters father been gene tested? I ask because your daughter HAD to get the genes from somewhere & if not you then your hubs. If your hubs is negative then something has to be wrong with your gene test. Of course, 1/3 of the population has...
  23. squirmingitch
    Hmmmmmm.... I don't know if the minus would be before or after. Can you perhaps scan that & post it here? You can black out your personal info so we don't see that part. Don't worry about asking lots of questions! That's what Celiac.com is about. I feel your frustration. I'm so sorry. I know you just want to feel good again & wonder if you ever...
  24. squirmingitch
    I think I have the key. In your last post Chris, you put DQ2- (note the minus sign) and DQ8 which has no minus sign beside it. If that is correct, then my interpretation is that it's saying you do not have DQ2 gene but you do have DQ8 gene. You don't have to have BOTH genes to be celiac but the probability goes down if you only have one. See: http://www...
  25. squirmingitch
    I don't understand this at all. DQ2 & DQ8 are the celiac genes. This makes no sense. Maybe Colleen can call in some troops to look at this. I'm in the middle of switching computers & trying to get all my info. migrated over to this new one plus a learning curve b/c this is a Mac. All my reference material is over on the other computer yet...
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