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squirmingitch

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About squirmingitch

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    Female
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    Gardening, birds, bees, butterflies and nature in general. Nature is a genius!
    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. http://www.celiac.com/gluten-free/topic/115445-relief-and-it-isnt-dapsone/ Click on the above link & read it.
  2. Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now.
  3. 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 then again, breathe. You're going to be fine.
  4. 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 for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea! I'll update as things go along.
  5. 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 food & symptom log can be a great help especially in the beginning.
  6. Youcould try this:
  7. 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. All I'll say is make sure you get the regular blood work that is supposed to be done while you're taking it.
  8. Sure is! It says so right on their website: https://www.miralax.com/why-miralax/the-most-recommended-choice/ MiraLAX® is gluten free and sugar free, and available without a prescription.
  9. 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? Just ask!
  10. You might consider going Paleo. Elana's Pantry has gobs of recipes. https://elanaspantry.com
  11. 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.
  12. 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 records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
  13. 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: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet. Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
  14. 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 extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
  15. 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....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous! I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!