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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    2. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    3. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    5. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.