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
    Well gal, you have the most important attribute of all for dealing with this insane rash & that's a fantastic sense of humor! That will take you far.
  2. squirmingitch
    Taking Benadryl is fine!!! For me, Benadryl doesn't do a thing but Claritin helps some -- we're all individuals so what works for one may or may not work for another. I wouldn't worry about taking a shower -- that's fine; and don't worry if blisters burst open -- that's okay too. You just don't want to take your fingernails & scratch right? I don...
  3. squirmingitch
    Irish, do your darndest to get him to take 2 biopsies just in case 1 gets screwed up. Also try not to scratch the ones you want him to biopsy. The patterning the lab will be looking for is very easily destroyed by scratching (another reason for taking 2 biopsies). I know, I know, it's impossible not to scratch & you'll do it in your sleep automatically...
  4. squirmingitch
    Good job!
  5. squirmingitch
    Cross posted with Colleen.
  6. squirmingitch
    I can't say for sure but I think they can take a biopsy from any darn where they want to. They DO have preferred places it seems but I still think they can take it from anywhere. It really is a very small punch they take. I think they like to get the fleshiest area they can & behind the ear would be less fleshy but if that's where they have to do it,...
  7. squirmingitch
    Super! We'll be waiting......
  8. squirmingitch
    It could be dh but I wouldn't say that for positive. You really should get a dh biopsy from a derm experienced in doing the biopsy. A dx of dh is a dx of celiac disease. Is the rash bilateral -- appearing on both sides of the body at the same time? Read this thread: https://www.celiac.com/forums/topic/110557-could-this-be-dh/ And this: https://www...
  9. squirmingitch
    You are very welcome! My husbands initially presented like the way you are describing yours but we had NO idea at that time that there was even such a thing as dh much less celiac disease. Over the years the presentation of his changed until he got to the point where his were like underneath the skin blisters & they would erupt with the fluid. Mine...
  10. squirmingitch
    You could print this out & take it to the derm who did the biopsy incorrectly & tell him/her that they did it wrong & now you want ti done RIGHT & hand them the paper that explains the CORRECT procedure: Open Original Shared Link Here are some more links you may want to print out & take: Open Original Shared Link Open Original...
  11. squirmingitch
    I KNOW your dh biopsy was done incorrectly. PLUS you have to be eating a full gluten diet for at least 2 months before the biopsy. AND if you've had oral steroids or steroid shots or been using topical steroids in the last 2 months before the biopsy then you will get a false negative. I think you have dh. The symmetry of it & the up all night itching...
  12. squirmingitch
    I think sending the biopsy to Utah is a good thing. Not every lab has the facilities to properly examine dh biopsies nor the personnel trained for such. As I understand it, the U of Utah has a great celiac center & is very knowledgeable on the subject plus they do a lot of research. I understand Dr. John Zone is in charge of the Derm Dept. there &...
  13. squirmingitch
    You are so welcome! It truly can hit you at any time in life so one has to be aware of that & watch. The best thing to do is get tested every couple of years. I'm so sorry your mom's sisters won't take it seriously. You can lead a horse to water..... When they get really sick maybe they will listen. Celiac can do so much damage! Not just to the...
  14. squirmingitch
    Okay, well I understand then why you need the proof positive. But you need to know that you need one heck of a good derm. I have seen WAYYYYYY too many dh biopsies screwed up b/c the derm did it wrong. And delayed in the 1st place b/c the derm said it was eczema, psoriasis, dermatitis, scabies, bed bugs & everything else under the sun EXCEPT dh. Consequently...
  15. squirmingitch
    When your gut heals then you will be able to gain. It's pretty much just as simple as that. Be patient.
  16. squirmingitch
    You know, you don't need any one's permission to go gluten free so you can skip the dx if you want to but you will probably never go back on gluten long enough to get an official dx later. The other thing is ~~ do you have kids? They should be tested for celiac -- if they do not have the rash then they get the celiac blood panel.
  17. squirmingitch
    You should absolutely get a dh biopsy. A PROPER dh biopsy. Find a derm with experience. You don't have to have any other symptoms -- those of us with dh tend to either not have GI symptoms or have them much, much milder. With your mom & niece being celiac it's all too possible for you to. Yes, what I see looks like dh but then lots of things can but you...
  18. squirmingitch
    Irish, I was just thinking..... It would help someone somewhere down the line if you would post the name & location of the dermatologist who DOES know how to do the dh biopsy in the Doctors forum. I see you posted there when you were looking for one. You can just start a new thread saying this guy knows what he's doing as far as dh & where he's located...
  19. squirmingitch
    Your dads shins could have been. I NOW know my mom was undoubtably dh & therefore celiac. She had the rash in her scalp. Yeh, I felt it & saw it & it itched like MAD! It was just like ours!!!! Mom always said it was nerves. Logical considering she had 3 kids & we weren't all angels. (snort) She used to use a toothpick to scratch the living...
  20. squirmingitch
    Hi y'all! As a southerner you might call me the queen of fattening foods. Okay, I'll get serious now. I was 103 lbs since I was around 13 yrs. old -- I'm 58 now. About 5 years before I found out I have celiac disease I began losing weight. I ended up at 93 lbs. when I began eating gluten-free. That was 3 years & 1 month ago. I eat a LOT. I'm 5'...
  21. squirmingitch
    You can order the brownies online __ I get mine from Amazon. BTW, you know celiac disease is genetic? Has your mom ever been tested? You know there is such a thing as silent celiac where there are no symptoms?
  22. squirmingitch
    Yes, they have no earthly clue "the skin thing" is in many ways worse than having GI symptoms. They have no idea that if we get a teeny crumb we can have to pay for it for months & months or even years of extended itching, stinging, burning, ugly skin! Honestly I don't think 1/2 of 1% of them understand the skin thing & do not think it's celiac at...
  23. squirmingitch
    Namaste products are free of peanuts, gluten, wheat, soy, corn, potato, tree nuts, dairy & casein. The Spice Cake mix is especially delicious! Here's a link to Namaste so you can see what they make. Lots of choices there! Open Original Shared Link
  24. squirmingitch
    And read this: https://www.celiac.com/forums/topic/108804-to-anyone-looking-to-get-a-dx-of-dh-a-skin-biopsy/
  25. squirmingitch
    wendylady, 60% of celiacs with dh test negative on the celiac blood panel. Does this rash often mirror itself on opposite sides of the body? Pressure points are a favorite place for dh to flare. Waistbands, bras, wrists from cuffs, panty lines. where socks are, you get the picture. I will NOT wear a bra anymore --- never was fond of the torturous things...
×
×
  • 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.