Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Itch-o-rama!


momxyz

Recommended Posts

momxyz Contributor

I felt I had been doing so good.... I'm almost 7 weeks gluten free, with one weekend of falling off the wagon a month ago...

but just last weekend I was happy to report no new spots and old ones starting to heal, although slowly.

And then, at the end of this week! An Attack! Today, burning and itching returned, and although I forcibly restrained my self from scratching after I woke up, even w/o scratching some of the spots started to blister and exude fluid, all by themselves...

And I have new spots... no new "geography" affected, thank goodness, but new spots around old ones... and everybody is angry and red, instead of "tame" brown.

Ok so I am looking back over the last few days... Friday I was at a conference, and lunch was provided. I had been hoping we would have the chance to order and select, or at least salad would be on the menu. Fat chance. Boxed lunches Apple, sandwich, and potatoe chips. I had the apple but was still hungry, so ate the middle of the sandwich - turkey, cheese, lettuce. thought that was ok.

Along comes Saturday. I have my usual "on the go" breakfast, coffee, OJ, banana, homemade rice crackers. I'm volunteering, and mid afternoon, I have to use the bathroom. One, twice, three times.... this is not me. My daughter has had GI symptoms, my tummy and tract have been to this date copestetic, and it's the rash that's been my incentive to go gluten-free along with my daughter.

So this morning I am really bumming because I really want to lick this rash w/o oral drugs. Yes. the hydrocortisone cream provided relief very quickly, but, I really did not want to add to my collection of leopard spots.

Is this unusual, to be worse after getting better?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

Sorry, but it is definitely not safe to eat the filling out of a gluten sandwich. That filling has been put there by gluten-touching hands and has itself been touching gluten--plenty of cc there. I am sorry that you are feeling bad afterwards, but t'was not a wise decision. Yes, after you have been gluten free it is normal to have a worse reaction to gluten. Your body has been getting used to not having to deal with it, so when it encounters it again it is outraged and goes bonkers to a greater or lesser extent depending on the individual. Hope you are feeling better soon. If nothing else, it has taught you how careful you must be...

momxyz Contributor

thank you for your reply...

part of me knew better, having had one reaction after a weekend away. but the amount encountered this time was so much less than the last "off the wagon" exposure I really was surprised.

I have to fill out an online evaluation of the conference, and I am going to mention the need for choice for luncheons. The business that was catering this conference was very local and I have been able to get take out from them before (salads). All the organizers would have had to do was either included a salad, or let people choose from the take out menu when they signed in for the day.

ChemistMama Contributor

Yep, mushroom is right, no picking from the sandwich!

Unfortunately, whenever you go to a conference, it'll be your responsibility to ask the organizers for the contact info for the caterers so you can plan a gluten-free meal beforehand. I had to do the same at a recent high school reunion, and fortunately they were extremely nice and accomodating.

If you're in doubt, there are several heat-and-eat items you can take with you, Hormel has a whole gluten-free list, and there are several gluten-free Healthy Choice soups in the pull tab cans (Healthy Choice is a ConAgra brand and they will label any gluten present.). Taste of Thai has several box noodle meals that you add water and heat in the microwave, too.

I'm sorry about the itching, it stinks!! By the way, don't go crazy with the hydrocortisone, my dermatologist says that it can hinder healing. Try Sarna lotion with pramoxamine. My DH got worse before it got better, too. :( Hang in there! I'm 9 months gluten-free and things have calmed down a lot.

ang1e0251 Contributor

So this morning I am really bumming because I really want to lick this rash w/o oral drugs. Yes. the hydrocortisone cream provided relief very quickly, but, I really did not want to add to my collection of leopard spots.

You can lick the rash by not licking the inside of a gluten sandwich! Sorry, just couldn't resist. Now that you know that gluten that is too small for you to see can cause you to react, take it as a lesson and be more cautious. It's your responsibility to check your meals. You can never assume you'll have choices or safe food. You have to be the one to make sure or just bring your own food. Even if I had arranged for food, I would bring back up food. There can be a mixup and there you are hungry.

momxyz Contributor
I'm sorry about the itching, it stinks!! By the way, don't go crazy with the hydrocortisone, my dermatologist says that it can hinder healing. Try Sarna lotion with pramoxamine. My DH got worse before it got better, too. :( Hang in there! I'm 9 months gluten-free and things have calmed down a lot.

Ok, I have tried to use your advice here - yesterday I tried going without the hyrocortisone and almost made it thru my work day with feeling itchy witchy. I did put a little on after work. Today was better still and after work, I had to stop by the grocery store, which has a fairly decent pharmacy section. Probably not as big a selection as say Rite Aid, but decent enough.

Well I did find Sarna lotion, but under active ingredients, it only listed camphor and menthol, not pramoxine. Perhaps it was mentioned somewhere else on the bottle; I have gotten so focused on reading ingredients that I immediately checked the drug facts section on the back of the bottle....

So I kept looking. I did find Gold Bond's medicated anti itch cream. It's active ingredients are 1% pramoxine along with 1% menthol. No Camphor tho. ( I believe the purpose of Camphor is like an analgesic?)

So I got that. Putting it on I could really feel (and smell) the Menthol.

Ok, and to all the other posters, the scolding is duly accepted and appreciated!

  • 1 month later...
positivenrgfairy Apprentice

when I used to get it (not having any clue what was causing it) the only think that made it go away was a hydrocortizone shot.

Hope you feel better!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ChemistMama Contributor

There's actually two types of Sarna lotion, one with the menthol and camphor, and one that's labeled for sensitive skin that has the pramoxine- the bottle has a purple outline around the product name. There's another one called Dermarest senstive, the regular has hydrocortisone but the sensitive formula has pramoxamine.

If you're sores are on your arms or legs, one thing that I and another DH sufferer found that helps are compression gloves/stockings. Not pretty, but I have very bad DH on my right calf, and that stocking helped with the itching and it kept me from scratching. :) Not pretty, but effective!

momxyz Contributor
There's actually two types of Sarna lotion, one with the menthol and camphor, and one that's labeled for sensitive skin that has the pramoxine- the bottle has a purple outline around the product name. There's another one called Dermarest senstive, the regular has hydrocortisone but the sensitive formula has pramoxamine.

If you're sores are on your arms or legs, one thing that I and another DH sufferer found that helps are compression gloves/stockings. Not pretty, but I have very bad DH on my right calf, and that stocking helped with the itching and it kept me from scratching. :) Not pretty, but effective!

thanks for the explanation on the different types of lotions.

I can see how the stockings would be helpful; I've been doing something sort of similar. My worst spots are from the ankle to mid calf. After applying the lotion, I wrap a single layer of gauze around my legs in those region, then put on pantyhose. Not pretty but I normally wear pants to work anyways. Like you said, keeps me from scratching!

Things are getting much better with time tho.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,590
    • Most Online (within 30 mins)
      7,748

    uhlissuh
    Newest Member
    uhlissuh
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.