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

Latest Celiac Disease News & Research:

Everything posted by squirmingitch

  1. squirmingitch
    Oh, wait a minute! I read your post wrong about the gene testing. I don't understand..... it says no haloype detected yet doesn't state what your genes are?
  2. squirmingitch
    I gave Colleen a holler about the bloods --- others are better at that than I. BUT, BUT, BUT, 13 days is not enough time back on gluten after being off it since late Sept. So the tests are false negative; at least I would bet my hat on it with a 99% chance of being false negative. Dairy doesn't make non celiac gluten intolerant people sick --- it's celiacs...
  3. squirmingitch
    Nope, lack of GI symptoms when one has dh does not mean it was all in your head. Heck, before I had a clue I had celiac (via dh), I was at the GI doc for the colonoscopy when you turn 55 or close enough & he asked if I have "D" & I replied no. Why? B/C I did not consider that I did. I used to get horrid cramps & D about once every 2 months. Now...
  4. squirmingitch
    I edited my post above so go back to make sure you read all of it please. Thanks!
  5. squirmingitch
    I don't know everything about it but I know a good deal. You're embarrassing me Colleen. Okay, down to business. 60% of the time, those with dh test negative on the celiac blood panel. That brings us to the question of whether the doc even did the full, current blood panel. You should get your test results from the doc & compare them to this: ...
  6. squirmingitch
    There's always a catch isn't there? Loud scream of frustration!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Okay, life gave you lemons. Let's go make some lemonade. One foot in front of the other & then the next & then the next annnnnnnd breathe.
  7. squirmingitch
    People with dh tend to have fewer, or less severe, or no GI symptoms at all. This is because the antibodies deposit under our skin. We still have damage to our villi but it tends to be patchier. Now, I have not been glutened (thanking all the powers that be!!!!!) since I went gluten-free. But I have read others with dh who have been cc'd or full out glutened...
  8. squirmingitch
    Awwww hon, it's hard to be a parent. I have to hand you credit. Even harder being a parent when your child has an illness. I've been thinking....... What I think I would REALLY do? Keep him on gluten & start looking for a new derm right away. See if you can't get him in before you have to go back to the one you saw yesterday. Hedge your bets. I...
  9. squirmingitch
    DO NOT beat yourself up over this!!!!! You can go in prepared as all heck & they can screw you up so bad that you forget half of what you wanted to talk about EVEN with notes! And they do rush you. You did really good considering. Yeh, I would have wanted to make a crack about "like mildly pregnant" also. I am so glad you understand about the hydrocortisone...
  10. squirmingitch
    If it gets too, too bad then call the doc & ask to be seen right away. Perhaps the doc will dx on reaction as he's seen how your son is off gluten & now on gluten. Sometimes docs will dx that way when the gluten challenge makes the person so sick they deem it wise not to continue on the gluten. And there are quite a few people who never make it through...
  11. squirmingitch
    Here are some links I Googled. Open Original Shared Link Open Original Shared Link
  12. squirmingitch
    Sounds like you have your answer. Now you just have to get through it until the tests are done. Not an easy task for parents or your son. (((((HUGS)))))
  13. squirmingitch
    YVW! And let's hope you never find out because I'm hoping you never get glutened or cc'd ever again!
  14. squirmingitch
    I have to say that it does not sound like what you have is dh. Hallmarks of dh are the insane itch 24/7/365 & bilateral presentation, & grouping, along with a few other things you do not mention.
  15. squirmingitch
    Thankfully, I have not been glutened since going gluten-free so I can't tell you about reaction times. I can tell you that dh can ebb & flow eating gluten or not eating gluten. The stuff has a mind of it's own! Before I went gluten free, in the "early" days of the rash, I didn't know I had dh & therefore was eating gluten every day. Some days I got...
  16. squirmingitch
    The links to your photos don't work -- at least for me. it says page not found. Okay, I seriously doubt it's tinea since you got it on both elbows at the same time and you were glutened. Itchy, well tinea is itchy too but you have bilateral presentation and on you elbows. Is the liquid that comes out clear & watery at first & then as it dries it...
  17. squirmingitch
    Awwwwwwww man! I know how that ear burns!!! And itches. Burns & itches all at one time. It's really hard looking at that on a child. Okay, now things are much more clear. Don't worry about it ~~~ it is intimidating to try to explain everything the first time you post. There are a few reasons the tummy ache could come after going gluten-free...
  18. squirmingitch
    Great! Being well prepared can make it or break it. You're so welcome. That's what all of us are here for. Sort of a "pay it forward" thing. There were people here who helped me immensely when I knew nothing & was floundering in the murky waters.
  19. squirmingitch
    It's a real sticky wicket with kids. If we were talking about an adult, I would say go gluten free & forget about a dx but with kids, they need that dx for school, college & the military so it's important to get one if possible. And yes, the steroids ARE a problem. They will negate any positives on a test. He will need to be off all steroids for...
  20. squirmingitch
    Okay, so the derm thought it was dh & told you to take him gluten-free yet had NOT done a biopsy yet. So she was going to do the biopsy AFTER he had been gluten-free for how long????? I realize she did not do the biopsy but right there we have a problem. One needs to be eating gluten right up until the biopsy is taken, not stopped a week before or 2 days...
  21. squirmingitch
    It could be dh, then again it could be something else. It's really your call as to putting him back on gluten right now. I will say that if the derm wants to do a dh biopsy, he's going to have to be on gluten for 2 months prior. Sorry! If that's all the tests the GP ordered then he did not do the full celiac blood panel AND those with dh test negative...
  22. squirmingitch
    itchyAbby is right. Also, if you are still getting traces of gluten then you can not say you gave up gluten. I'm not coming up against you, I'm just saying there is a difference & on this site or to celiacs, when one says they gave up gluten, it means they do not eat gluten at all & avoid cross contamination as if it were the plague. The dh...
  23. squirmingitch
    I'm not surprised the test came back negative. Those of us with dh test negative on the celiac blood panel 60% of the time. Generally, steroids make the itch and the rash go away or at least calm down but the backlash comes when the steroids are withdrawn (as in oral steroids) or when the steroid shot gets out of your system. Then the rash & itch come...
  24. squirmingitch
    Good! Sounds like a plan.
  25. squirmingitch
    Well, try your darndest to keep from getting cc'd! Once the rash presents, it can go bonkers on you real quickly.
×
×
  • 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.