Jump to content

squirmingitch

Advanced Members
 View Profile  See their activity

  • Posts

    4,552

  • Joined

  • Last visited

  • Days Won

    94

 Content Type 

Profiles

Forums

Events

Blogs

Celiac.com - Your Trusted Resource for Celiac Disease & Gluten-Free Living Since 1995

Everything posted by squirmingitch

  1. squirmingitch
    Anytime you see the word malt it means barley was used to make the malt & barley is NOT allowed!
  2. squirmingitch
    You've jumped the first hurdle which is the surgery. Now you know exactly what you're dealing with. We're here for you at all times. {{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}
  3. squirmingitch
    I agree with ravenwoodglass.
  4. squirmingitch
    This looks exactly like what I'm going through right now. I got cc'd some time ago & am dealing with the rash. It has ramped down now to appear just as your daughter's. You have to make sure she doesn't get the tiniest amount of gluten. Whole foods only. Forget processed gluten-free foods for now. Also make sure she doesn't have oats for a full year...
  5. squirmingitch
    I completely agree with ravenwoodglass. Kids heal MUCH faster than adults. I would also keep calling the doc doing the endoscopy every single day to see if there are any cancellations so you can get it done sooner.
  6. squirmingitch
    I'm guessing it means signs & symptoms.
  7. squirmingitch
    Open Original Shared Link
  8. squirmingitch
    We know she needs that official dx. And here's the thing..... if she goes gluten free & then tries to go back to gluten for an endoscopy she's likely to have a MUCH harder time. We tend to react far stronger to gluten after we've been off of it. Many people have thought they could go off it & then go back on it because the wait time for an endoscopy...
  9. squirmingitch
    You can always say "It's medically necessary" leaving off the word diagnosis. YOU know it's medically necessary for you to not eat gluten so don't feel bad terming it the way I typed it.
  10. squirmingitch
    There's a problem with her going gluten-free now. If the doc wants to do an endoscopy she needs to be eating gluten right up until the endoscopy. Most docs are NOT going to dx based on positive blood work alone!!!! The endoscopy is "the gold standard" for diagnosis.
  11. squirmingitch
    It's only come up once with me and it was a situation where I was at a new neighbor's home & was offered food. I had to tell them I have celiac, explain I can't eat their chili or whatever. She kept offering me things. I live in the south & it's very impolite not to offer anyone in your home something to eat & drink. I was fighting a long tradition...
  12. squirmingitch
    Ask your GI if he can recommend a celiac versed GI where your new home will be. The farm sounds terrific! How are you doing now? Have you gained any weight back yet? How long have you been gluten free? You read the Newbie 101 in the coping section right? Bone broth is great for healing the gut.
  13. squirmingitch
    YES! Get your daughter tested!!!!!!! And your wife. I am glad your siblings are listening to you!!! Yes, if they test positive then it will help your case. I too, am livid that they never thought to test you in the hospital. It's beyond shameful!!!! You got lucky getting a GI that seems to know what the heck is going on & is wise in celiac. For...
  14. squirmingitch
    You need to describe all this to the GI at your next appt. and take your wife along so she can help you remember things as well as corroborate. There have been cases of getting a dx w/o doing the challenge but it's really rare & depends on the doc. He could do a genetic test - that only rules out celiac if you don't have the genes but if you do have them...
  15. squirmingitch
    Distilled vinegar IS gluten-free, I assure you it is. I understand you are reacting to it & that's totally logical considering how damaged your gut apparently is from what all you've described. Vinegar is highly acid and your gut just can not take it right now. There are probably a lot of things your gut can't deal with at present. I'm sorry but...
  16. squirmingitch
    OK, so the doc who did the endoscopy is the jerk. He didn't even interpret the results? Just sent it to your doc who had to interpret them? This makes me question how many biopsies he actually did & from what sections of the intestine. I think you should get your records. There should be 4-6 biopsies. I forget exactly which sections they should come from...
  17. squirmingitch
    No, non celiac gluten sensitivity does NOT cause flattened villi. You need to be on gluten for 3 months for the blood tests: Open Original Shared Link Make sure the doc does the FULL serum panel for celiac disease. This is it. Print it out & take it with you to the doc & stand on his shoulders if you have to in order to make sure he...
  18. squirmingitch
    The Chicago Celiac Disease Center says eating gluten 1 slice of bread or 1 cracker per day for 12 weeks for the blood tests and for an endoscopic biopsy 2 weeks prior. I can't find anything saying exactly how long to eat gluten for a dh biopsy except they recommend you keep eating gluten until the biopsy. DH seems to be the bastard stepchild of celiac disease...
  19. squirmingitch
    If you've taken oral steroids in the last 2 months it can give you a false negative on the dh biopsy. Don't use any topical steroids either for about 2 weeks prior.
  20. squirmingitch
    I left some links for you on another thread where you had said your blood tests were negative. Here: Get copies of your celiac serum panel that was done. #1, I bet they didn't give you a full panel. #2, 60% of those with dh test negative on the blood panel. Here is the official recommendation from the Chicago Celiac Disease Center on eating...
  21. squirmingitch
    And get your records!!!
  22. squirmingitch
    Justpeachy, get your doc to do a serum eTG aka TG3. Read, print out & take to doc: Open Original Shared Link Open Original Shared Link Open Original Shared Link Open Original Shared Link
  23. squirmingitch
    I am so sorry to hear this. I will be sending all my strength & healing thoughts you way throughout your ordeal. I have no tips for you as thankfully I have not been through this. I did want to give you my full support though. I do have a dear, dear, friend who just went through a lumpectomy & radiation. She declined the chemo as she has...
  24. squirmingitch
    I will answer you as to what symptoms I had (if I can remember them all LOL). Just to let you know, I have dermatitis herpetiformis aka "the celiac rash" which IS celiac. We tend to have fewer, milder GI symptoms and 60% of us test negative on the blood panel but still have the damage tot eh villi. Okay, here goes: Dizziness, sometimes unsteady...
  25. squirmingitch
    I'm quoting you: (deamidated gliadin abs, iga was one point above the reference range, everything else normal) You had a positive blood test period! That one positive can not be ignored. A positive is a positive even if it isn't sky high. This is more significant in light of your having only been back on gluten for 4 weeks.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.