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
    That is great info. to know Laura. I was so disappointed when she told me only ppl with that insurance could use him, so I'm happy to hear that is not a hard & fast rule & there could be options.
  2. squirmingitch
    If you're in the Denver metro area, there is a doc in Arvada, Co. who knows all about celiac as well as dermatitis herpetiformis because he has it! This info. is from a fellow celiac friend of mine who uses him. His name is: Dr. Mark Ptaskiewicz 7701 Sheridan Blvd, Arvada, CO 80003 (303) 338-4545 She says her HMO is Kaiser Permanente & only people...
  3. squirmingitch
    I just hope the dermatologist (derm for short) knows their stuff. I'm sorry to tell you that far, far, too many don't. It's like when you were trying to find out what the rash was way back when. Your story is like so many others.... scabies, impetigo, allergies, eczema, psoriasis & on & on & on. It's like a broken record. Yeh, I agree with...
  4. squirmingitch
    Geez, I'm really sorry your doc didn't truly understand about the Dapsone; that it's not meant to be a lifelong treatment. Generally, people are put on Dapsone only until they are strict gluten-free long enough for the rash to ramp down so it doesn't make you NUTS. By that time, you've got all the gluten-free rules down pat & can be taken off Dapsone...
  5. squirmingitch
    That's the problem with Dapsone. You take the pill, you have no rash, therefore you don't have a clue when you're getting a little cross contamination but the antibodies are still getting deposited under your skin. Obviously this is what has been happening with you as you say you've had a few attacks while on the Dapsone. Your Dapsone dosage wasn't enough...
  6. squirmingitch
    Yes! Pet food can gluten you!!!! Pets lick themselves. drool & what the gluten goes on can get transferred to you. You said grinding..... do you use the same food processor? There could be a source of cc. There are grain free/gluten free pet foods. Just Google gluten-free dog food, cat food. Also, in the grinding process, if there's gluten in it, the...
  7. squirmingitch
    Re-read the Newbie 101 again & go through your kitchen & make sure everything is in order. Also, does your hubs eat gluten or drink beer ever? You actually can get glutened by kissing. He has to brush his teeth REALLY well before you kiss. With the rash, every time you get glutened or even the slightest cross contamination, it fires back up all those...
  8. squirmingitch
    Hi itchynscratcy, I have no clue. What you describe does not sound like dermatitis herpetiformis. Only the itching part but the whole thing with the knee & the other places that lump & flake & peel in big scales..... doesn't sound like dh. What you're going through sounds awful though & I feel for you.
  9. squirmingitch
    Yes, you are correct; Dapsone is in the sulfa class. How are you doing Doorknocker? Have you had any greater relief from being on the Pepcid longer now?
  10. squirmingitch
    https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/ I am not ashamed of my rash. I tell them the truth. You never know when you will be helping by making someone knowledgable about celiac disease & also about dh.
  11. squirmingitch
    You can only tell them. The rash itself will do the rest. The sad thing is, by the time they have to admit it, the rash is so ensconced they have a long fight ahead of them to wait out the antibodies which makes them sooner or later doubt it's dh b/c "they are eating gluten-free so why is this rash still hitting me?" It's like beating your head against a...
  12. squirmingitch
    Can you get the derm appt. moved up to be Oct. or Nov.? Anytime that's 2 months from the last steroid. What does your mom say bout her rash. Does she eschew celiac disease or do you think you can get her to get a biopsy?
  13. squirmingitch
    Well, I am very glad to hear you are getting some kind of relief!!!! Doing a happy dance for you! And isn't it wonderful to be able to think of something other than the insane itching & burning 24/7? As to the burning precluding a blister & not getting a match on the other side..... the match may be a day or 2 or 3 behind orrrrrrrrrr it might just...
  14. squirmingitch
    Coleen if the place we were renting at the time had a bath tub, I would have filled it with ice & sunk down to my neck in it! Seriously though, the worst places on my scalp were from my temples & over my ears which was a real "B". That's right where a towel turban wraps so that wasn't possible for those & my glasses temples go there too...
  15. squirmingitch
    I DO understand! I had it all over my scalp too & it drives you crazy not really being able to see. I like the towel turban hiding an ice pack!
  16. squirmingitch
    I forgot to say that if you haven't tried it yet, try limiting your iodine intake. See thyca.org for a low iodine diet (of course, leave off the gluten foods). Iodine is like throwing gasoline on a fire for many of us with dh.
  17. squirmingitch
    When you said you were ready to scalp yourself, it really resonated with me. I once told a doc the same thing. I told him I was ready to take a fillet knife to my skin & peel it all off as that could not be any more painful than what I was going through. My dh has presented literally everywhere on my body so I know how your scalp feels. Before I forget...
  18. squirmingitch
    Doorknocker, you have a good doctor there. He's using his noggin. The Pepcid is not going to hurt you & it could help & possibly help a lot. You'll only know by trying it. The cream is a corticosteroid which can help. The thing is with the steroids.... they can come back & bite you when withdrawn. It's like a backlash with dh. I'm sorry you...
  19. squirmingitch
    You just have to make SURE you do not get the tiniest amount of gluten! The pregnancy hormones do have an impact on dh too. Many people never had dh & when they got pregnant, it presented. No way to tell you how long. Everyone is an individual & then throw in your pregnancy & it's anybody's game. Being pregnant, I would not limit your...
  20. squirmingitch
    Excellent GottaSki! Excellent.
  21. squirmingitch
    What bloods did they do?
  22. squirmingitch
    Did you see a dermatologist? Do that & insist they do a dh biopsy. Make sure they do it right. Read threads on here for info. on how the dh biopsy is correctly performed, Meanwhile, try limiting iodine intake in your diet. Iodine for some reason is like pouring gas on a fire for most of us with dh. Google Thyca.org for a low iodine diet.
  23. squirmingitch
    Not ON a fresh lesion but ADJACENT to a FRESH lesion. You can NOT have a valid dh biopsy if you have been gluten-free or gluten light --- you have to be actively eating gluten for at least 2 months if you had been gluten-free or gluten light. If you have taken oral or used topical steroids in the last 2 months, you will get a false negative.
  24. squirmingitch
    Absolutely correct Georgia_guy!
  25. squirmingitch
    Well, it is genetic sooooo...... It's really too bad this daughter didn't get the celiac blood panel & the endoscopy before she developed the rash. It would have been so much easier to get a dx then. I understand what happened with the doc leaving etc.... The thing is, she has now (I call it this) "crossed over" from the gut issue presentation to...
×
×
  • 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.