Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

I Think I Have Dh..think I Possibly Always Have


needtobebetter

Recommended Posts

needtobebetter Apprentice

Hello..I feel so stupid..not even thought of it before..

I came on here over a year ago as ive had bad gastro probs, which never showed on blood test as celiac.

I accidently got on the diet as was doing candida diet, experienced problems with ryvita so when i heard about celiac was sent for testing. Was on thediet for 7 months withur ryvita, had to go back to eating for biopsy and followed a low carb diet and have always wondered if I may be had healed my to much on the diet, for a small amount of gluten!!

At the very begining I had a thick herpes looking rash at the base of my spine, about teh size of my hand but I do suffer from herpes and just thought it was that.

I have distention of my belly, impacted feaces, hung overfeeling, muscle weakness / wasting facial droop, crepe paper looking skin (at 32yrs) tmj, muscle spasum for a year in my neck Wry neck, fatigue, constant weeing, saggy skin on of a sudden..lots more..

After I had the biopsy and they said no i was told to eat again so I did got ill of course sokept thinking it was the candida not celiac, so sometimes had things with gluten in.

I had a further 2 tests by blood which were negative.

Ive recently started getting these small patches on my skin one on my chest, bottom and leg but not both sides??/

Ive looked at photos and it does look like it - it is itchy aswell sort of looks likea cross between exma and herpes..

Can you have DH just on one side of the body thought it mirrored the other side from what Ive read ...

So, Iam going to ask the doctor on Tuesday just seems a bit weird!!

I keep trying the diet and have to do candida diet aswell but I still have other symptoms, which I am having my hormones tested for on tuesday..

I get big puffy face, constipated, bad fatigue / brain fog, cold, also heat intolerance sweat all over my body in the heat, constant weeing as soon as I drink water and the palms of my hands frequently shrivel uplike ive been in the bath for hours and then dry out and then finley faky skin ...feels horrible and my skin feels so fragile..

BUT..LOL..

I also seem to get hyper symptoms nervous energy where I run around doing thing but dont do anything properly, anxiety, talk a bit weird things come out funny, thin skin, muscle weakness, cant relax, rls, TMJ..and other stuff ..

Last year I had a mad attack where my heart was pounding, my skin was all clamy, headache, face weakness, neck wry, arm and leg weakness, frequent dioreah..it was the next night after taking prozac..which i have stopped the same weekend. I went a bit manic,was shaking all thetime and dropping things for about two weeks after..

It wasnt a stroke I had a brain scan..I think I am going hypo to hyper sometimes or something...

Thanks for listening..any advice on DH would be great, came on here last year but didnt even read about dh til i have this weird rash thing..

Mand:)


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



Celiac.com Sponsor (A8-M):



RoseTapper Newbie

Good grief! You sound so ill! First, from my personal experiences and those of my son (and from reading other postings on this forum), I believe that DH can appear on only one side of the body even though what little medical data there is out there states that it must be mirrored on both sides. I get it on both sides of my face and neck but only on the sole of one foot. My son gets it in the identical areas.

I'm not a doctor, but many of your symptoms sound like thyroiditis (you need thyroid supplements). Also, it sounds to me as though you are lacking in magnesium. Have you been tested for hypothyroid and basic nutrient depletion? If you have celiac, you can certainly be suffering from both thyroiditis and depletion of nutrients and hormones. I hope your doctor is doing the proper tests!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,079
    • Most Online (within 30 mins)
      7,748

    Lynn94
    Newest Member
    Lynn94
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your approach is spot-on—trusting reliable sources like Mayo Clinic and sticking to a gluten-free diet that works for you is the best way to navigate all the noise out there. The claim that rice and corn contain forms of gluten harmful to celiacs is indeed a misconception. While these grains do contain proteins that may technically be referred to as "glutens" in a broader scientific sense, they are structurally and functionally different from the gliadin found in wheat, which is the specific protein harmful to those with celiac disease. Scientific research overwhelmingly supports the safety of non-contaminated rice and corn for celiacs unless there’s a separate sensitivity or allergy involved. Some opinion pieces or alternative health sources may blur the lines by conflating these proteins, which can cause unnecessary worry. You're absolutely correct to focus on the distinction between scientifically validated information and anecdotal claims. It's also important to note that some people with celiac disease may develop sensitivities to other grains over time, but this is individual and not a universal rule. If you’re asymptomatic and thriving on a diet that includes certified gluten-free products with rice and corn, there’s no reason to change what’s clearly working for you. The internet is a breeding ground for well-meaning but misguided advice, and it’s easy to feel overwhelmed. Your instinct to validate claims through reliable research is exactly the right way to go. Keep enjoying your gluten-free meals, stick with trusted certifications, and don’t feel pressured to adopt restrictive diets that aren’t backed by science or tailored to your specific needs. Happy New Year to you too!
    • Scott Adams
      Healing and regaining energy after a celiac diagnosis can be a frustratingly slow process, but you're not alone in feeling this way! Everyone's healing journey is different, and factors like age, how long celiac was undiagnosed, and the extent of intestinal damage can all play a role. In general, villi can begin to heal within a few weeks to months after starting a strict gluten-free diet, but for some adults—especially those diagnosed later in life—it can take a year or more to see significant improvement. Studies suggest that older adults may heal more slowly, but it does happen with consistent gluten avoidance. Since you're already taking iron, vitamin D3, and a multivitamin, you're on the right track. Here are a few additional tips that might help: Be Patient with Your Body: It’s hard to wait, but healing takes time. Track your progress in small ways—maybe energy levels on a scale of 1-10 each week—to notice gradual improvements. Check for Other Deficiencies: Sometimes celiacs have trouble absorbing other nutrients, like B12, magnesium, or zinc, which can also affect energy levels. Your doctor may want to test for these. Consider Other Conditions: Fatigue can be linked to other issues like thyroid problems, adrenal fatigue, or even sleep disturbances, which can sometimes occur alongside celiac disease. It might be worth discussing this with your healthcare provider. Stay Active, but Pace Yourself: Gentle exercise, like walking or yoga, can help improve energy levels, but don’t push yourself too hard—listen to your body. Hydration and Balanced Meals: Make sure you're drinking enough water and eating a balanced gluten-free diet with plenty of whole foods. Sometimes highly processed gluten-free products can leave you feeling sluggish. Remember, healing isn’t just physical—it’s also mental. You’ve made a huge, positive change by going gluten-free, and your body is working hard to repair itself. It’s okay to feel impatient, but know that you're moving in the right direction. Hang in there—you’ll get there!
    • Lotte18
      Hi Scott, I thought I'd be like "most people" and could go back to having dairy once my villi had healed.  But after dealing with neurological problems that cropped up long after my gut had healed it turned out that this just wasn't true.  I have no idea if celiac influences pancreatic enzyme production or if it's the other way around--for some of us-- but there is a very real relationship that isn't being discussed with patients.  The article just reiterates information that can mislead you if your real problem is pancreatic not villi related.  
    • Scott Adams
    • trents
      Welcome to the forum, @Amyinwyoming! Answers to your question that you might receive may not be helpful to you as an individual since sensitivity levels vary significantly within the gluten sensitive/gluten intolerant/celiac community. The other complicating factor is that low levels of gluten in a product may not cause obvious symptoms but may still generate low level inflammation in the small bowel. When in doubt, it is best to pass on the product. I'm not a particularly sensitive celiac so I might allow myself to eat something at a guest's house that was made from a food product with the kind of disclaimer label you describe but I typically shy away from buying them or consuming them when I have a choice.
×
×
  • Create New...