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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Jetskier I was researching for something entirely different & just happened to run across what I was talking about earlier. It's called petechiae. Here are some links: Open Original Shared Link Open Original Shared Link Open Original Shared Link Open Original Shared Link Open Original Shared Link
  2. squirmingitch
    I did some Googling & came up with Vanderbilt - I know, Nashville but Nashville (I used to live there) is not so very far from Memphis. Open Original Shared Link See the doctors names? See if you can get one of them. at least they know what dh is. Also you can try contacting either/both of these support groups & ask if they have any...
  3. squirmingitch
    I've said it before & I'll say it again; the battle with dh is every bit as much a mental battle as it is a physical one. It doesn't matter that you didn't keep a detailed log & documentation with photos b/c this stuff does what it damn well pleases when it damn well pleases. Trying to figure out a pattern will make you stark raving mad. Ask me how...
  4. squirmingitch
    Welllllllllllllllllll, boy, this feels like telling someone to shoot themselves but here goes...... You could try eating a whole lot of seafood, preferably shellfish, You see, for most of us with dh, high iodine foods are like pouring gas on a fire. A trick we use to help rash flares ramp down is to limit the iodine in our diet so you could play with...
  5. squirmingitch
    Hey Charlie, Yep, the decision is totally up to you. You have enumerated the pros & cons pretty thoroughly. A couple things I want to mention about testing for dermatitis herpetiformis (we call it dh here). Oral steroids within 2 months prior will skew the biopsy results. I'm afraid you're most likely going to have to be far firmer than your very...
  6. squirmingitch
    I agree with Raven & GFinDC, great advice they gave you. This research will also give you time to run across the celiac/gluten internet myths of which there are quite a few. Things such as gluten in envelope glue -- UNTRUE. There are some really crazy ones out there and when newbies run across them, they really don't know NOT to believe those things and...
  7. squirmingitch
    I hear you Antonette! I wouldn't touch gluten with a ten foot pole! I wouldn't eat the tiniest crumb of gluten for a million dollars. it's not worth it to go through the rash from hell. The doc will tell you that you have to be eating gluten & if he doesn't tell you that then he doesn't know what he's talking about.
  8. squirmingitch
    Hi sbatson, here is info. on iodine & dh. Open Original Shared Link Open Original Shared Link - the last paragraph in the first column on page 1. We don't recommend one stops all iodine forever. I'm sure Raven was in a rush or she would have told you that - it just slipped through the cracks. We tell people to reduce the iodine for 2 weeks...
  9. squirmingitch
    I wanted to update this thread. I did find that for me, the doxycycline eventually made me so nauseous that it was awful. I cut back to 1 twice a day and still found myself unbearably nauseous 24 hrs. a day. I quit taking them even though the rash was still flaring. BUT it had ramped down greatly and I am so grateful I had the doxy during the worst.
  10. squirmingitch
    You're welcome!
  11. squirmingitch
    One thing to try, Spencer, is cooking all your veggies really well. I know they aren't very attractive that way nor so great tasting but the aim here is to make things easy on your gut while at the same time getting as much nutrition as you can through food. So mushy veggies are the order of the day, same applies to fruit - cook it. If you bought any gluten...
  12. squirmingitch
    I'm sorry you're feeling so bad. The first 6 months to a year can be a roller coaster, up & down, up & down. Secondly, do not ever trust eating out at "a place that claimed everything was gluten free" -- by that do you mean it was a totally gluten free restaurant or do you mean the restaurant claimed everything you ordered was gluten free? Cross contamination...
  13. squirmingitch
    There is no such thing as a gluten sensitivity panel; at least not one that is recognized by the medical establishment at large. You don't have to be allergic to wheat to be a celiac. It's 2 entirely different things. If they gave you a celiac panel then what the nurse said points to celiac.
  14. squirmingitch
    Antoinette, you need to stay off the steroids both oral & creams because they will skew a dh biopsy. The oral steroids almost always have the result of working but the moment you go off them, there is a backlash from hell with the rash. You really, really need to see a derm & get a dh biopsy but the biopsy is not taken ON a lesion, it's taken...
  15. squirmingitch
    You're welcome!
  16. squirmingitch
    Luckily neither I nor my husband have ever had any negative reactions to the flu vaccine either pre-diagnosis or post diagnosis. I had the flu, oh I was around 25 when I had it. Then my husband got it from me. I tell you it purely kicked my butt from FL to Montana & back! I was young & healthy & it laid me so low it took months to get back to...
  17. squirmingitch
    I don't think so Raven. This is detecting the peptide in gluten not antibodies against gluten.
  18. squirmingitch
    I read about a gluten sniffing dog probably 2 years ago so I Googled it. Apparently there are several now as well as those who say they can train them. Read on my friends: Open Original Shared Link Open Original Shared Link I don't do Facebook but for those of you who do..... look for Elias the gluten sniffing dog
  19. squirmingitch
    I agree Gem, I would rather have a blood draw but yes, there are those who don't test positive on the serum. I don't know if Dr. Hill just screwed up when he said TTG or if that was a typo. It could easily be either. I am astounded beyond measure at the amount of typos in the professional world these days. It seems everything you read has at least a...
  20. squirmingitch
    It looks like it won't be too long before we have a new method of testing for dietary compliance and it appears it's going to be more accurate/sensitive than the present serum tests. At this link, there is an interview with Ivor D. Hill, MD, MB ChB; Alessio Fasano, MD. Open Original Shared Link I would point you to page 4 of that. Some of you...
  21. squirmingitch
    I got the link fine but if I recall correctly I am a member of Medscape - I believe I just plain signed up for it - I know there isn't any fee for anything I sign up for otherwise I think very long and very hard whether it's going to be worth my money or not.
  22. squirmingitch
    There is not test for non celiac gluten sensitivity. That would not cause your numbers to be elevated.
  23. squirmingitch
    Read a WHOLE lot of threads in the dh section. There is a specific way to biopsy for dh & 95% of the time the derm does it wrong. There's a lot to be learned there. He has to keep eating gluten even for the dh biopsy.
  24. squirmingitch
    Well, that's the normal course of events for a dx. If your doc is willing to dx you based on the blood alone then great but make sure he puts it in your records so your butt is covered in future when someone questions you.
  25. squirmingitch
    Um yeah, you pretty much slam dunked it! Yes, probably they would have been higher if you'd been eating a full gluten diet but even though you were carb free for 2 months, you were probably getting all kinds of cross contamination. Make sure to read the Newbie 101 pinned at the top in our Coping section. Did the doc say anything about getting an endoscopy...
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