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

Should I Go To The Er?


charolastra00

Recommended Posts

charolastra00 Newbie

So, I've suspected Celiac for awhile and had previously cut gluten out of my diet. I currently have a DH outbreak on my hands so bad that I've been crying for the past few hours (it burns and itches beyond anything I've ever had before) and I can't bend my fingers or put my hand into a ball. However, because health insurance in this country is horrible, I can't go to urgent care because that's not covered by insurance and ER could take hours which I don't have (I'm going out of town tomorrow morning for 2 weeks and still have a ton of things to do like laundry and pack) and is still $100. I just don't know what to do. Also, I've heard that DH isn't particularly treatable so I don't know if they could even do anything for me. I'm on allegra and zyrtec every day and my hands are covered with aloe, lanacane, and cortizone- but none of that has worked.

I can't hold a phone so my mom is trying to get me into my allergist's office, but he doesn't work Mondays and they're short staffed so they don't know when or if they can get me in.

I know the only cure is to not eat gluten, but I've fasted for the past 2 days just so I would be SURE not to ingest anything that could aggravate it- and it's still only gotten worse. None of my shampoos or anything have gluten in them.

I really just don't know what to do and I'm freaking out, and I'm sure the stress isn't helping. However, I wasn't stressed out AT ALL when the rash started. I'm all alone too because I'm away from home for the summer and school hasn't started so none of my friends are here yet.


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



Celiac.com Sponsor (A8-M):



Bravie Apprentice

I didn't take any medication for my DH. It went away on it's own with a gluten free diet. Although I still have problems like gas and bloating, I no longer have DH like I used to. I had it on my chest, shoulders, arms and a little on my back before I went gluten free. It takes a few months to a year if you're just starting the diet to see improvements on your skin. It took me 3 months. Ofcourse when I slip up real bad on rare occasions, it comes back a little and doesn't go away for a week or two with a strict gluten free diet. It only came back once though. But other than that, I have my DH under control...

dlp252 Apprentice

I don't have DH so I don't know how helpful this will be, but your outbreak sounds very serious...I think I might consider going to the ER. There may be something they can give you that can at least ease the itching/burning. Maybe not, maybe so.... I sure hope you get some relief before your trip.

blueeyedmanda Community Regular

I have to agree, it does sound pretty serious and with you going away tomorrow you will want to at least get an opinion, for even if you cannot get some meds or something for the DH just to have some peace of mind.

ravenwoodglass Mentor

If your regular doctor is not available you should go to the ER. A short course of oral prednisone, it should be about 10 days to 2 weeks and will be a large dose first day with decreasing doses after that should help if they will give it to you. Too many side effects for long term control but it should get you out of this crisis. It is commonly used for severe poison ivy or contact dermatitis, what my DH was diagnosed as for years and hopefully they can help you with this.

BettyL. Rookie
So, I've suspected Celiac for awhile and had previously cut gluten out of my diet. I currently have a DH outbreak on my hands so bad that I've been crying for the past few hours (it burns and itches beyond anything I've ever had before) and I can't bend my fingers or put my hand into a ball. However, because health insurance in this country is horrible, I can't go to urgent care because that's not covered by insurance and ER could take hours which I don't have (I'm going out of town tomorrow morning for 2 weeks and still have a ton of things to do like laundry and pack) and is still $100. I just don't know what to do. Also, I've heard that DH isn't particularly treatable so I don't know if they could even do anything for me. I'm on allegra and zyrtec every day and my hands are covered with aloe, lanacane, and cortizone- but none of that has worked.

I can't hold a phone so my mom is trying to get me into my allergist's office, but he doesn't work Mondays and they're short staffed so they don't know when or if they can get me in.

I know the only cure is to not eat gluten, but I've fasted for the past 2 days just so I would be SURE not to ingest anything that could aggravate it- and it's still only gotten worse. None of my shampoos or anything have gluten in them.

I really just don't know what to do and I'm freaking out, and I'm sure the stress isn't helping. However, I wasn't stressed out AT ALL when the rash started. I'm all alone too because I'm away from home for the summer and school hasn't started so none of my friends are here yet.

I have only a very mild form of DH so I have never sought treatment for it. Your rash sounds similar to the type of rash one of brothers and myself get whenever Tide is used for laundry. Just recently, I had a experience of severe body rahes at night. I did a food dairy, change soaps to all non-allergens soaps. Still didn't have a clue. In May my blood presuure when to over 200/100 or there about. MY FCP couldn't see me for 7 days (I had an appointment in 7 days time). No one in her office could see for 3 days. Her office suggested ER I finally went and my blood pressure was back to normal. I saw a cardiolist and afterhearing my story he said that the Lisinopril 15 mg(I had been taking for over 5 years was the cause. He change the medicine and that was what I was allergic. Check out all medicines and soaps, lotion, ect. It might not be DH.

One of my brohers has DH and he takes something when he eats gluten the prevent DH from happening. I don't know what. He was diagnose at Mayo Clinic.

lovegrov Collaborator

If this is truly DH you need dapsone.

richard


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
If this is truly DH you need dapsone.

richard

Very true but if noone has diagnosed her officially with DH they probably won't give it to her. From the description she gives, especially on the hands it will most likely be considered 'contact dermatitis'. DH blisters look much like a severe plant oil reaction, mine was thought to be poison ivy.

Prednisone would clear my severe DH up as a child, I was covered in blisters on legs and arms that never went away. A 10 day course would do the trick. Of course within a month the rash would be back and I would be getting yelled at for getting into poison ivy, even in December. They would only give it to me about once a year though, undoubtedly because of the possible side effects.

charolastra00 Newbie

Thanks for everyone's advice!

It actually looks exactly like poison ivy which I would have assumed it was if there wasn't any possible way that I could have an ivy reaction. I've had a severe sunburn for the past week before the rash broke out and so I've stayed inside and relaxed (no work because my internship is over for the summer). I literally did not go outside for a few days and I did not come in contact with any unwashed clothes that could have come in contact with the oil from poison ivy.

I was able to track down my allergist and told him what it looked like over the phone, including my fears of celiac or just a general gluten issue. He said that he would support me being more stringent on a gluten free diet but that since I don't really have any GI issues, that it probably wasn't it. I'm on a 6 day round of methylprednisolone and he said to call on Thursday and if it hasn't cleared up at all, we'll try something else on top of it. Oy. My hands have calmed down now a bit because of a cool saline compress, but my back is getting twingy >.<

Also- is grain related heartburn an issue with celiac? I didn't think about it until as soon as I hung up the phone, but before I began cutting out glutens, I would get horrible heartburn to the extent that an 18 year old shouldn't. :P I haven't had it in about 3 months since I cut out simple grains and then more recently gluten. Ditto with the kind of burps that just won't come out. I never burp but I used to get the gas buildup for hours that wouldn't go away. I wrote it down so that at my next appointment with the allergist, I'll remember to bring it up. Hopefully, this horrible rash will be gone by then!

jerseyangel Proficient

You've gotten excellent advice on your rash, and hopefully the meds your doctor gave you will clear it.

I wanted to say that I used to get the gas build-up--exactly as you describe, before I was diagnosed. I still get reflux (severe enough to cause bronchial spasms) when accidently glutened. So, yes, those can be symptoms, too.

ravenwoodglass Mentor
Thanks for everyone's advice!

It actually looks exactly like poison ivy which I would have assumed it was if there wasn't any possible way that I could have an ivy reaction. I've had a severe sunburn for the past week before the rash broke out and so I've stayed inside and relaxed (no work because my internship is over for the summer). I literally did not go outside for a few days and I did not come in contact with any unwashed clothes that could have come in contact with the oil from poison ivy.

I was able to track down my allergist and told him what it looked like over the phone, including my fears of celiac or just a general gluten issue. He said that he would support me being more stringent on a gluten free diet but that since I don't really have any GI issues, that it probably wasn't it. I'm on a 6 day round of methylprednisolone and he said to call on Thursday and if it hasn't cleared up at all, we'll try something else on top of it. Oy. My hands have calmed down now a bit because of a cool saline compress, but my back is getting twingy >.<

Also- is grain related heartburn an issue with celiac? I didn't think about it until as soon as I hung up the phone, but before I began cutting out glutens, I would get horrible heartburn to the extent that an 18 year old shouldn't. :P I haven't had it in about 3 months since I cut out simple grains and then more recently gluten. Ditto with the kind of burps that just won't come out. I never burp but I used to get the gas buildup for hours that wouldn't go away. I wrote it down so that at my next appointment with the allergist, I'll remember to bring it up. Hopefully, this horrible rash will be gone by then!

I am glad you got through and were able to get the med. It should help fairly quickly at least with the itching and inflammation. As far as the heartburn issue goes for my DD it was her only GI symptom, most others were neuro related. For those times when we get glutened we use Pepto and it seems to help fast. There are many folks who have DH that don't have gut issues at all. I never had noticeable GI problems until after my second child but I had DH and neuro issues since the age of 4 or 5. You can get the area near the lesions biopsied by a derma, just make sure they are familiar with how to do it. With a diagnosis of DH there would be no ifs, ands, or buts about your need to be gluten free.

Fiddle-Faddle Community Regular
You can get the area near the lesions biopsied by a derma, just make sure they are familiar with how to do it. With a diagnosis of DH there would be no ifs, ands, or buts about your need to be gluten free.

If you are on prednisone, though, that will screw up the results of the biopsy. I'm glad it looks like things are improving for you. And yes, reflux can definitely have something to do with gluten, as do thyroid disease, joint pain, diabetes, and a whole host of other nasty autoimmune problems. What you have sounds exactly like what I call my DH-type rash (it was never confirmed as DH because the prednisone screwed up the biopsy), and it went away with the combination of prednisone and going gluten-free. And I didn't have major intestinal issues, either--at least, I didn't think I did. After going gluten-free, I realized that I wasn't supposed to have continual bloating, gas, heartburn, joint pain, and alternating diarrhea and constipation! Also, I am now on less than half the dose of thyroid meds that I was on before going gluten-free. Who'd have thunk????

I wonder if eating might help your system clear things out faster?

Keep us posted, okay? Hope you feel much better very soon!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,559
    • Most Online (within 30 mins)
      7,748

    gracedomingo
    Newest Member
    gracedomingo
    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

    • 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! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.