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pricklypear1971

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Latest Celiac Disease News & Research:

Everything posted by pricklypear1971

  1. pricklypear1971
    Btw, it isn't usually lactose - it's usually casein. So when you buy food, avoid casein and lactose if you are really trying to go milk free. Lactose is sugar, casein is protein.
  2. pricklypear1971
    When are your follow up labs? Mine are in December....so that will be 5 months on supplements.
  3. pricklypear1971
    Whoa! Don't panic. Some people take longer than others and some go through a nasty detox. If you aren't already, keep it to whole, unprocessed foods. Yes, it's a pain but you can add the others back soon. Try ditching milk (a bit of butter probably won't hurt). No gluten-free baked goods. Take it easy on beans. Have you tried probiotics and digestive...
  4. pricklypear1971
    Thanks. I am not doing the remodeling but we do need to go back to the house and clean some stuff out. And after the remodel, clean the house and prepare it to rent. I also need to do touch up work like paint, etc. This is VERY inconvenient. DH areas have calmed down but it was the same reaction I get with too much iodone. But it actually got itchier...
  5. pricklypear1971
    Interesting article. I've always noticed Derms are "fix-it's". They want to remove it, give it a pill or cream. The concern isn't the cause-but the fix. However, that makes sense to a degree...patient shows up miserable and needs help. They help. Derms aren't subtle ( at least the ones I've been to). They slap down some serious meds or procedures at...
  6. pricklypear1971
    Those look YUMMY.
  7. pricklypear1971
    I agree 100%. I'd love to volunteer to be glutened; however, since I get neuro symptoms I respectfully decline. I am sure I'll get glutened (and therefore an outbreak) anyway, so it would be great to be able to report those episodes.
  8. pricklypear1971
    I have no idea. I was temporarily helped by corticosteroids; however, I paid a high price. My adrenals went nuts, couldn't regulate sugar, was having eye issues, couldn't drive, etc...... I tried every antihistimine - was on mega doses of OTC and a strong rx. In the end, I discovered high salicylates like food dyes (fruits and veggies don't seem...
  9. pricklypear1971

    ARCHIVED Biopsy

    pricklypear1971 replied to Kquad's topic in Dermatitis Herpetiformis

    Well, if going gluten-free gets rid of your rash then yes. However, many people with DH take months if not years to get rid of the rash on a gluten-free diet.... So, as far as I know as long as you have a rash you can have it biopsied. Some rashes are better candidates....but technically it can still be biopsied. The rash happens where iga is stored...
  10. pricklypear1971
    I took 5000 iu/day for a week, now down to 7800 iu/WEEK. I was/am deficient by testing. Since starting d and iron my shaky hands have stabilized. Remember, I also live in the desert so I will get more winter sun than most other people. I turn on like a light bulb in the sun.
  11. pricklypear1971

    ARCHIVED Biopsy

    pricklypear1971 replied to Kquad's topic in Dermatitis Herpetiformis

    A DH biopsy would not depend on currently eating gluten, just having the DH rash. An ENDOSCOPY would depend on currently (for 3 months) eating gluten. DH biopsies have a 37% negative rate. It is a very difficult biopsy, even if it should be positive. It is unknown why it is so highly negative - they say the iga is delicate and it's hard to get a good...
  12. pricklypear1971
    Vanicream during outbreaks, with a layer of Vaseline. Ugly but effective. My DH is under my arms, so it's very sensitive skin. When the sores weep, I pack washcloths and ice packs under my arms to help stop the itching and the gross feeling.
  13. pricklypear1971
    I like Crunchmaster or Blue Diamond.
  14. pricklypear1971
    I found it helps to keep rashes moisturized with something heavy-duty. Oil would count as heavy duty.
  15. pricklypear1971
    Btw I wouldn't reco quinoa flakes. Gross. I love the whole grain, can't stand the flakes. horrible flavor, IMO.
  16. pricklypear1971
    Ask your employer for the phone number to the insurance company and call them and ask about benefits. If it's a group plan there should not be exclusions. You must ensure the old and new doc are on the insurance if you want to continue seeing both (depending on how that plan works). You've gone through months of gluten challenge - don't give up now...
  17. pricklypear1971
    An MSDS would probably list it, but the house is 10 years old. Good luck. There are old threads on this board about it....joint compound is particularly risky, evidently. The house flooded, now is under restoration - so there's crap everywhere.
  18. pricklypear1971
    Ingredients vary by manufacturer, which is why it can be difficult. You must know the manufacturer. Prednisone is nasty stuff. I was on it. It may be necessary in the short term, but evil long term.
  19. pricklypear1971
    Went to the old house today to work out paint colors. Got home and now my DH areas are itching. They were CRYSTAL CLEAR this morning, and I took my own lunch. I'd heard there was gluten in some building materials....this is the first time I noticed a reaction but it makes sense. The first time I broke out in DH was 2 months after I started working...
  20. pricklypear1971
    Have y'all tried talking about this and coming up with a way to quickly remind him he's reacting to gluten when he exhibits this behavior? Like a safe word or phrase? I know when I'm in the middle of a DH flare or having a panicky/heart racing/brain foggy moment I'd love for someone else to "see" it and remind me to calm down, sit down and breathe and...
  21. pricklypear1971
    Burt's Bees lipstick, gloss. Available lots of places. I use MyChelle skin care - order it online or buy it at Whole Foods. I use (and so does hubby) Dove unscented deodorant. I think it's a "chic stick" but he doesn't care since it's unscented. Dove body soap is also safe. We use Suave hairspray and so far so good.
  22. pricklypear1971
    I'm sorry this is happening and hope your brother improves soon. Get a hold of his meds and take them to a pharmacy and find out what it is and have them call the manufacturer and find out if contains gluten.
  23. pricklypear1971
    In this case I doubt it. New glass and small tasting room... Took our glass to the next winery where it was washed...again, very quiet. Third place, same thing... These wineries are small and not like Napa/Sonoma. We took our own food, ate it outside on the patio on top of the cooler. Very low cc opportunity. It was like someone injected alcohol...
  24. pricklypear1971
    I had that in the beginning while I still had a DH rash, and still on powerful antihistimines. And corticosteroids....forget it. I was stroking the furry wall. Rice Works chips brought on a bad episode of being stoned/panicked - along with a DH flare. For a WEEK. The last time I felt gluteny was Lays chips that were probably cc'd from gluteny hands...
  25. pricklypear1971
    Ive had nausea and dizziness, hungry feeling, also. I also had this pre-gluten-free, started when they out me on corticosteroids for my DH. I think it's part of learning what to eat (proper balance of carbs, proteins, sugars) and when to eat it (take snacks with you). Had a resurgence in nausea after adding iron supplements, but that's par for the...
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