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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year. You've been given great information. Just breathe and...
  2. 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...
  3. squirmingitch
    I think it won't hurt a bit to eliminate dairy for a while. As far as carbs, that's kind of an individual thing. Some do better without them or with limiting them and some, like myself, have to have carbs. I am skinny, have a high metabolism & would dry up & blow away without my carbs & I eat lots of carbs. They don't bother me. Keeping a...
  4. squirmingitch
    Youcould try this:
  5. squirmingitch
    Do you mean Dapsone? I have not done Dapsone. To me, it's a scary drug. Secondly, I am allergic to sulfa drugs & Dapsone is in the sulfa class. Here's a thread I started about what is helping me: There are those who have tried Dapsone. Some had good results. Many more were not able to tolerate it, got side effects & had to go off it...
  6. squirmingitch
    Sure is! It says so right on their website: Open Original Shared Link MiraLAX® is gluten free and sugar free, and available without a prescription.
  7. squirmingitch
    Read the Newbie 101 & follow the links contained within. This will give you a ton of good info. & teach you how to avoid cross contamination. Yep, you're exactly right.... you didn't get sick overnight & you're not going to heal overnight. We're here for you though through the good times & the bad & for pity parties too. Questions...
  8. squirmingitch
    You might consider going Paleo. Elana's Pantry has gobs of recipes. Open Original Shared Link
  9. squirmingitch
    There will be ups & downs for 6 months, maybe as much as a year. Sort of like being on a roller coaster ride. You can also get gluten withdrawal; just hang in there! I had swelling while eating gluten.
  10. squirmingitch
    To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps". You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical...
  11. squirmingitch
    Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: Open Original Shared Link which says in part: The presence of signs and symptoms compatible...
  12. squirmingitch
    OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the...
  13. squirmingitch
    I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then...
  14. squirmingitch
    Any news?
  15. squirmingitch
    Ditto what cyclinglady said.
  16. squirmingitch
    I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game...
  17. 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...
  18. squirmingitch
    Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
  19. squirmingitch
    I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred! Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh. Oh gosh! Don't you just hate the ones in your ears...
  20. squirmingitch
    Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be...
  21. squirmingitch
    I will let you know as things progress.
  22. 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...
  23. squirmingitch
    I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband...
  24. squirmingitch
    Yuummmmmmmmmmmmmmmmmmmmmm BUTTER!!!!! I've never had a problem with any brand of butter. Butter is not made in a factory that makes anything with gluten.
  25. squirmingitch
    I fully agree with cyclinglady!
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