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squirmingitch

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by squirmingitch

  1. squirmingitch
    I wish I could tell you the magic potion but unfortunately I can not. As I stated, I am experimenting myself. IMHO if you had trouble with Dapsone before then I wouldn't recommend trying it again in any dose. I was on the doxy 100mg twice a day for 18 days. Then I had to up it to the two 100mg caps in the am & than again in the pm. I think it took...
  2. squirmingitch
    Below is an email I received from Bob's Red Mill on January 15, 2016 in response to my inquiry to them regarding whether they only use gluten-free oats grown under a purity protocol or if they also source optically sorted oats for their gluten-free oat products. Let us be perfectly clear that Bob's Red Mill does NOT use only oats grown in dedicated...
  3. squirmingitch
    Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now...
  4. squirmingitch
    Planters is a Kraft product. Kraft is a very trusted company who will always reveal gluten in plain english -- ie: Wheat, barley, rye. They also will always reveal if they are processed on the same lines as the above. Look at the can of Planters & you will see below the ingredients it says "manufactured in a facility that processes other tree nuts" or...
  5. squirmingitch
    I will let you know as things progress.
  6. squirmingitch
    I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more. Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs...
  7. squirmingitch
    Anytime you see the word malt it means barley was used to make the malt & barley is NOT allowed!
  8. squirmingitch
    This is a very interesting and informative thread. Please do update when you can.
  9. squirmingitch
    Our dearest Bartful - Alison - went to her heavenly rest on May 21, 2016. She was 61. She was so much more than statistics. She was kind, generous, loving, giving and understanding. She gave everything of herself and never asked for anything for herself. Rest in peace dear Alison.
  10. squirmingitch
    I'm going to amend cyclinglady's comment: Science has determined that MOST celiacs can handle about 20 parts per milllion (size of a crumb) before setting off a reaction. There are some who can't even handle the 20ppm. The FDA had to come up with some kind of a cut off point and 20ppm is what the final ruling was on labeling foods gluten free. That...
  11. squirmingitch
    Reason to go for an official diagnosis is your future & that of any kids you may have. Celiac is genetic. If you do have celiac then all first degree relatives should be tested every 2 years in the absence of symptoms & immediately if symptoms present. Celiac can present at any age. It will be MUCH easier for your kids & other relatives to get...
  12. squirmingitch
    HAPPY BIRTHDAY LISA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What a lovely bracelet. I am so happy to hear they were asking about celiac and talking about testing. One step at a time! It's a start.
  13. squirmingitch
    Lisa, there is a huge learning curve to mastering the gluten-free diet! One thing I would say would be NO MORE eating out for 3 or 4 months at least. Bring your own food. Even beyond that time ALWAYS have "take along" snacks in your purse or the car for those times you really, really need something to eat. Never go anywhere without taking something safe to...
  14. squirmingitch
    Count another one with dh who can't do certified gluten-free oats. They got me big time. I had not had gluten-free oats since going gluten-free until Dec. of 2014 when I began making some bread that contained oat flour -- (BRM brand) but I don't blame BRM specifically - just gluten-free oats in general) & WHAM! I took a big hit.
  15. squirmingitch
    Good catch cyclinglady!
  16. squirmingitch
    As to the RAST - IGE, as I understand it IGE is allergy & not autoimmune. The doc did not do the full, current celiac panel. This is it: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also...
  17. squirmingitch
    You're so welcome! On the blood tests..... they are pretty accurate. It's only the people with dh who test negative on the bloods 60% of the time --- not "regular" celiacs. Just wanted to make that clear. You should go to here: http://www.cureceliacdisease.org and print off copies of pertinent items so you can take them with you to the...
  18. squirmingitch
    Rachel. I forgot to mention yesterday that in the case of your son who may well have dh; the reason I didn't say get his blood panel done first is because 60% of us with dh test negative on the blood panel for celiac. DH is best dx'd by the skin biopsy. What happens when people go for the blood panel first is that 90% of the docs & derms out there...
  19. squirmingitch
    Sorry but the doc is wrong, wrong, wrong. You have to be eating gluten right up till the blood is drawn AND if the blood is positive then you get sent to a GI doc for an endoscopy. If you haven't been eating gluten then you have to eat it for 2 weeks for the endoscopic biopsy.
  20. squirmingitch
    You need to take him to a great dermatologist who is well versed in taking biopsies of the celiac rash, Dermatitis Herpetiformis or dh as we call it around here. The biopsy needs to be taken on a CLEAR place ADJACENT to an active lesion. If they take it ON the lesion then they are doing it WRONG. He needs to continue eating gluten until the biopsy is taken...
  21. squirmingitch
    Dear Barty, Dear Barty, dear Barty, dear Barty, dear Barty. I love you. I will remember you. Whenever I think of you, I think of you in your store, happy, with lovely music filling the air, or at home with Patches in your lap and you feeding him from a spoon. I will always think of you these ways. You will go to your reward from your beloved Black...
  22. squirmingitch
    Tracy it can take years for the antibodies to get out from under our skin. Some longer than others. Don't loose heart though as plenty are relieved of the rash in months. Let's hope you are one of them! One thing you can do too is go on a low iodine diet for several weeks. Iodine is like throwing gas on a fire as far as the rash is concerned. Go to thyca...
  23. squirmingitch
    Hi Tracy It's really hard to say from a photo. There are hundreds of rashes out there in the great big world. DH is intensely itchy, like bone deep and it never stops itching. It will keep you awake at night. In fact, it seems to ramp up in intensity (if that's possible) in late afternoon. It almost always appears bilaterally -- spookily echoing itself...
  24. squirmingitch
    Robb you have responded to a post that is from 2008. I haven't seen yolo posting in years. I doubt you wil receive a reply.
  25. squirmingitch
    This is interesting and thank you for posting it. I am not saying this won't work or doesn't work but I just looked up numerous low histamine or histamine free diets and for the greater portion of my gluten free life I have been eating a low to no histamine diet even though I wasn't aware that's what I was doing. I could say it didn't make a bit of difference...
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