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
charolastra00
Posted

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
Bravie
Posted

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
dlp252
Posted

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
blueeyedmanda
Posted

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
ravenwoodglass
Posted

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
BettyL.
Posted
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
lovegrov
Posted

If this is truly DH you need dapsone.

richard

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
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
charolastra00
Posted
  • Author

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
jerseyangel
Posted

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
ravenwoodglass
Posted
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
Fiddle-Faddle
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748
    Kimmber
    Newest Member
    Kimmber
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.