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

2.5 Years After My First Episode, Dh Returns With A Vengence . . .


weaselfish

Recommended Posts

weaselfish Rookie

Back in late 2011, I joined this forum after having self-diagnosed my DH / Celiac condition.  Needless to say, I got a wee bit jaded after recovery / healing, backslid, and DH is back with a vengence.  This time bringing intense Edema in my hands, wrists, forearms, feet, ankles, and calves.  Beer was my downfall.  I've been again gluten-free for over 2 weeks, but my DH hasn't peaked yet ( ie, new small lesions still manifesting in a diminishing fashion ). 

 

The Edema I now have drove me to the emergency ward 2 days ago as I didn't know if it was my Kidneys, Liver, or Heart ( I'm 56 years old ).

 

Blood tests for Kidneys, Liver, and Heart came back negative, so it's Celiac.  All I was given was Atarax for itching, no diuretic ( I'm taking Diurex on my own ).  Fluid build-up is scary ( can't even see my right ankle bones ).  This time around DH got my eyes too ( yes, eyeballs itching - used anti-histamine eyedrops as suggested elsewhere here ).

 

The Edema causes me continuous pain and burning let alone the DH nightmare I've once been through.  Still using Vanicream ( moisturizer ),  Witch Hazel for itching, but the Edema is excruciating at times.  As for my eyes, I used Zaditor anti-histamine eyedrops with better-than-average success.

 

Thus, short of a worsening Edema condition, I'm left to Diurex, time, abstention of gluten ( and of course my favorite beer ), and prayers that God will help me heal again.

 

Edema tip:  Use pillows to elevate feet and hands if necessary for daytime rest periods, and night time sleep.  If I come across a " magic bullet " I'll report here.

 

Peace & healing to all, and don't forget:  Be Love,

 

WF

 

.

 

 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

What about getting the rash biopsied so you know if it really is DH or something else?  sounds like you had test for lots of things, but not Celiac?

weaselfish Rookie

What about getting the rash biopsied so you know if it really is DH or something else?  sounds like you had test for lots of things, but not Celiac?

Though I appreciate your input Yum!, please do not insult either my intelligence or perceptive capacity via pointless suggestions.  I went to emergency for Edema, not DH.  The emergency team confirmed my Edema was Celiac related as they have experience with those like me.  Thank you and peace,

 

WF

kareng Grand Master

Though I appreciate your input Yum!, please do not insult either my intelligence or perceptive capacity via pointless suggestions. I went to emergency for Edema, not DH. The emergency team confirmed my Edema was Celiac related as they have experience with those like me. Thank you and peace,

WF

Wow! Alrighty then.....

You said you were self-diagnosed with Celiac. I thought, since you were eating or drinking gluten, it would be a good time to get a definitive diagnosis. Sorry. I can see you do not want any suggestions.

Peace

GottaSki Mentor

I do agree with Karen that biopsies are a good idea since you have active DH lesions.

You seem to not be in need of diagnosis....so as long as your primaries and ER are on board..great.

Unfortunately, your situation is not the norm...we normally see folks that are fighting to be understood by their primaries and ER physicians

IrishHeart Veteran

Though I appreciate your input Yum!, please do not insult either my intelligence or perceptive capacity via pointless suggestions.  I went to emergency for Edema, not DH.  The emergency team confirmed my Edema was Celiac related as they have experience with those like me.  Thank you and peace,

 

WF

 

Hi Weasel,

 

I have suffered edema from celiac, but I have never met an ER person yet who knows all the symptoms associated with  C D,

It's unusual for them to even be aware of it. You got lucky. 

 

I did not find Karen's input insulting at all. No need to be upset with her suggestion. :) She makes a good point about biopsying the area since you have active lesions (you call it returning with a vengeance). Many people assume they have DH when in fact it is something else. We can have all kinds of rashes and sores from gluten. I did, but it's not DH.

 

Whatever the case, it appears you have learned a valuable lesson about imbibing in beer. 

 

I'd point you to some excellent G F brews, but I am fearful you might also find my suggestions "pointless and an insult to your intelligence".

 

Instead, I will just say: hope you feel better 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. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Oh my goodness medication causing pain !!!!

    2. - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    3. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    4. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,843
    • Most Online (within 30 mins)
      7,748

    K M
    Newest Member
    K M
    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

    • Colleen H
      I think I found a huge culprit for severe reactions to create worsening of my c symptoms. Do people with celiac have sensitivity and /or have opposite reaction to certain medications Where can I find a list ?  I'm new here I'm.wondering why I am getting worse when I take certain medicine...the burning feet.  Rebound muscle pain so intense  How many people get opposite effects or have a horrible attack after these meds
    • Colleen H
      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
×
×
  • 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.