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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 forgot to tell you that those with dh tend to have milder, fewer GI issues than "regular" celiacs so what you're describing is right in line with dh. You're going to have to push back on the doc & MAKE him/her test you. Remember, the doc works for YOU not the other way around. You must be very, very firm. If they say it's this or that or the other...
  2. squirmingitch
    You're welcome! I will add that loading up on iodine foods -- think shellfish --- can make the rash flare for a biopsy if you aren't having a flare when you see a knowledgable dermatologist. Take some Advil & eat a bushel full of shrimp or lobster & you ought to be good to go. LOL! Now seriously though, in case you didn't already know it, the...
  3. squirmingitch
    If you can take the biopsies to another place for a second opinion that would be wonderful. Well since you had already been gluten free & know it makes you feel better then if you can't get anything else going on with the doctors/tests, you know you can go back to gluten free and feel better. The Hashimoto and Sjogren are both associated with...
  4. squirmingitch
    They should have taken at least 6 biopsies. Yes, call them & see if there is a more detailed report. Did you get the celiac blood testing? You should have had that before the endoscopy. Do you have the results of the blood testing? If so, can you post it here along with the reference ranges? Were you eating gluten every day or had you gone gluten...
  5. squirmingitch
    One thing you can do if it's dh is to go low iodine for a couple weeks. Iodine is to the rash like gas is to a fire. Here's a low iodine diet: http://www.thyca.org/pap-fol/lowiodinediet/ Also NSAID's aggravate the rash. If you have to take anything, Then Tylenol seems to have the least irritating effect on the rash.
  6. squirmingitch
    You said you had your second biopsy today. What happened with the first one? Where exactly were each of these biopsies taken? Were they taken ON a lesion or on clear skin adjacent to a lesion? If they were taken ON a lesion then they will not turn up as dh b/c a dh biopsy is taken on clear skin adjacent to an active lesion. It gets a special staining &...
  7. squirmingitch
    Really some super feedback on this thread! Jewels, I have dh & test negative on blood work as 60% of us with dh do. My household is strictly gluten free as there are only my hubs & myself & wonder of wonders, my hubs also has celiac (dx 5 months after myself b/c I then recognized the symptoms). Hubs is doing great & he eats gluten-free...
  8. squirmingitch
    The Cleveland Clinic is a top celiac center. Their dermatologists should be versed in dh.
  9. squirmingitch
    Yes, I would say the reference on the report is what one would go by.
  10. squirmingitch
    Wait a minute! That Ttg IgG is a red flag. The ref. range is o-10 & your result is a 20; that's a sure positive. You only need 1 positive on the blood work to advance to endoscopic biopsies to confirm celiac disease. My opinion would be to do that. Keep eating gluten daily until all testing is done.
  11. squirmingitch
    You need to get an official dx. See a good GI versed in celiac & get the endoscopic biopsies. Then if you are positive, pretty sure you will be, your kids will need regular testing every 2 or 3 years.
  12. squirmingitch
    Vibrant Health Products Issues Allergy Alert On Undeclared Egg In LiveGfree Gluten Free Classic Soft White Hamburger Buns https://www.fda.gov/Safety/Recalls/ucm569131.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery
  13. squirmingitch
    2 weeks of eating gluten for an endoscopic biopsy as opposed to 12 weeks for celiac serum panel.
  14. squirmingitch
    Oy! I'm sorry! And because you didn't just add 1 item at the time, you are now left guessing. Been there, done that! It's soooooooo hard to just add 1 item & take it, take it, take it until you're sure it's okay and then add 1 more item and test that & so on & so forth. Ugh!
  15. squirmingitch
    Edgar Cayce was a "psychic & medical clairvoyant", a christian mystic. Ummmm, okay. Not exactly someone whom I would rely on for great medical or any other advice but you be the judge. Read about him here: https://en.wikipedia.org/wiki/Edgar_Cayce
  16. squirmingitch
    Dh can present anywhere on the body but a hallmark of it is that it almost always presents bilaterally. It echoes itself from one side of the body to the other. IOW, both arms, both legs, both elbows, all the way around the neck or each side of the neck...... you get the picture. Yes, it can present body wide. Here's a photo of my legs at one point....
  17. squirmingitch
    Well basically, in layman's terms, the study concludes that some celiacs are so sensitive that they haven't healed even though they have been following a strict gluten-free diet. They aren't doing okay eating 20ppm or less therefore their body is reacting & staying in a state of autoimmune attack. As celiacs, we don't eat gluten but we know there are...
  18. squirmingitch
    I don't know of any who haven't. It takes time to learn to be rabid about checking everything until it becomes second nature to you. However, those accidents can keep your symptoms going & even make them worse than before you went gluten free. And as others have said..... it takes time to heal and neuro symptoms are the last to go.
  19. squirmingitch
    I gave you the link for the Fasano diet in my earlier post. Something else that struck me was you said her itching ramps up at night. Almost all of us with dh will tell you it ramps up at night.
  20. squirmingitch
    This is what I'm thinking too. I can vouch for this as it's what I had to do & it's made a world of difference. I have a totally gluten-free household but I was reacting to even gluten-free products. Here's a link: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40 I have dh, the celiac rash, and can tell you that long...
  21. squirmingitch
    Another thought Have you considered taking her to a neurologist? itching can be coming from nerves & I mean the actual kind of nerves not the mental kind of nerves.
  22. squirmingitch
    I was thinking along the lines of a reaction to the poison used by the pest control people. Not a allergy to what they're using but a reaction to the poison itself OR the flea treatments used on the dog. This is where my mind was moving when I asked those questions. Just trying to brainstorm with you. Another thought...... what do you feed the dog?...
  23. squirmingitch
    Looks like you've been gluten-free for 3 years now this last time? I wouldn't give a snowballs chance in hell that you will test positive on either blood or endoscopy at this point without doing a full gluten challenge.
  24. squirmingitch
    Alyssa, while the above answers are true there is something I would like to point out and that is IF you jump the gun & get the blood testing b/c you don't want to eat gluten EVERY DAY for 12 weeks and you turn up negative then it is extremely common for docs to refuse to test you again after a 12 week challenge because they say, "we've already tested...
  25. squirmingitch
    Is she celiac? If so, are you positive she's not getting any cross contamination from ANYWHERE? Do you have any pets? Does she get exposed to pets at friends/relatives homes? Do you have a pest control service?
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