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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • 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!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.