Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Blisters


wowzer

Recommended Posts

Lemontree Newbie
Before I was diagnosed, I would get the itchy blisters on my fingers and on the inside of my forearms.

Now, when glutened, I get a few around my mouth--they do hurt, but are nothing compared to the huge ones I used to get on my chin.


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



Celiac.com Sponsor (A8-M):



Lemontree Newbie

I have heard that JerseyAngel and Mouse had DH blisters on their fingers.

My blisters started on 5/14/07 with what I thought was a spider bite (looked like a spider bite and itched) by late day it had a small group of blisters on it. By the next day my fingers itched on the opposite hand, then both hands. Every day they would alternate which hand, always middle and ring fingers. They itched before they errupted- I knew when it was coming. My hands burned and felt electric, I kept them over the Air conditioner while driving and held onto frozen corn at home. My doctor gave me a progesterone shot 5/19/07 and said it was Poison Ivy. I tried to tell him that this was no poison Ivy and the blisters came semetrically one at a time (this did not matter to him). The blisters healed, but more itchy spots occured on my legs and hips these just had itchy areas that turned into little red/pink dots. (on both sides, but the right more than the left).

Since my blisters are gone is it too late to get tested?

Does anyone else know about this electric tingly feeling (burning stopped) in fingers and when will it go away!

little d Enthusiast
hi i get this itchy thing on my hands and feet, look like white calusus and itch and hurt like crazy, i also get this zitty looking thing on my legs and the back of my knees and elbows, lookls like little white zits, no fluid though, and last night they looked like little ingrown hairs. what is this? itches like crazy especially the ones on the back of my knees? any help would be great.

what you are describing the pimple like thing on you knees could be karatosis piolarsis. I have it all over my body. had it since I was little

I am right now expreriancing on my left hand which it comes and goes for as long as I can remember it will also go to my right hand too but for now on my left. It is itchy for sure and I do have blisters which have gone done quite a bit since I took a shower before coming to work but is still there. Yesterday I had to look at my hand where the blisters are and it felt like I had some kind of bug crawling on me it felt wreid. So I made a doc appointment with my primary doc also to get a check up because it has been a year since I had any blood work done so hopfully he can look at it and tell me which im sure he won't be able too, because he didn't know what celiac disease was last year when I told him that I had a problem (to get a referral and all)

Donna

DebNC84 Apprentice
Sounds like DH to me Lynne. My face is a mess because that is the main place I break out with it and I hate it. I want to walk around with a bag over my head because I look like a leper.

one word.... RETIN-A

little d Enthusiast
one word.... RETIN-A

sorry cant use that i get hives with that

donna

jmd3 Contributor
Okay, I have asked this question probably too many times before, but I have had a new experience with it. I developed what looked like the beginning of chicken pox (only smaller) on three spots of my leg -- all in close proximity. It was after I accidentally consumed gluten in generic antibiotics I was given. They itched like CRAZY -- because they started "popping", I covered them with a Tegaderm dressing to keep the fluid from moving to other areas. Now I'm left with some mild scars (I scar pretty badly anyway). The dermatologist said that it sounded like DH, but would have to biopsy them when they're active. Given that I'm gluten-free, I'm hoping it doesn't happen again! Is this what DH is like, though?

Any help would be greatly appreciated!

Thanks,

Lynne

I had a scar on my hand from a gluten antibiotic IV - SINCE Dec.

Mine has just gone away since I started watching like a hawk with what I was putting on my skin at all times. I am only using botanically based lotions that are gluten-free.

Watch carefully what you are putting on your skin...anything from hand cream to soap, could be just about anything affecting you that has gluten in it that is geting through your skin. Watch your labels, call the companies - they like to say they don't add any gluten - but then when you ask about the products they get from other companies they add into the product the story changes, they can't be sure, or they say they don't regularly test for gluten. Be safe, check everything and then stay with what works!! ( Mineral oil and petoleum may make you smoother, but it is actually harmful)

  • 7 months later...
oldskool Newbie

Oh my $&@*!

Could this be it! You all have no idea what I have been living with and going through the past year of my life.

Long story short, since last January I was under extreme stress and trauma and had a bit of a breakdown due to a very sad event and a short while later I broke out in this painful rash that seemed like blisters almost all over my face and it was pretty much symmetrical.

I have been on Minocycline, Doxycycline, Bactrim DS, Accutane and various topicals that help to keep it somewhat at bay but it is still there and flares viciously from time to time and is the worst burning I have ever felt.

Nothing works on these blisters/lesions and they sting something awful.

The doctors do not know, have been told possibly shingles, but prednisone and valtrax did nothing.

I also get these sores in my mouth on my tongue.

I was diagnosed with Celiac through symptoms as a child and put on a gluten free diet for 6-8 months which cleared symptoms. Symptoms included, stop in bone growth and weight gain, diarreah, terrible blistery rash on my rear end, all at the age of 10 months.

Since my symptoms seemed to go into remission, the doctor introduced gluten back into my diet at 2 years and watched me unti lI was 10 to make sure growth etc. were normal and they were.

If this is what I am dealing with you have no idea how happy I will be (sounds funny doesn't it). I have tried every medication possible (although not dapisone) and none have cleared things, they always come back in the same area, terrible burning and I get the creepy, crawly, stinging feeling a day before so I know its coming.

If it is all gluten I will be so happy because I will be able to eat the correct diet and rid this terrible blistery pain for good!

What do you think of my situation...possible? I can answer further questions and details if that helps anyone.

I already started to cut back on Gluten and see the Gastro in 2 days. SHould I keep eating the Gluten now so if/when they do a biopsy they will be able to tell?


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,346
    • Most Online (within 30 mins)
      7,748

    Thomas D Cosgrove
    Newest Member
    Thomas D Cosgrove
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Given your severe symptoms it sounds like you would be much better off going 100% gluten-free!
    • Ginger38
      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
×
×
  • Create New...