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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      325

      Terrible Neurological Symptoms

    2. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    3. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      325

      Terrible Neurological Symptoms

    4. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Schar's products contain wheat!

    5. - Scott Adams replied to Jmartes71's topic in Doctors
      5

      Second chance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,614
    • Most Online (within 30 mins)
      7,748

    FilbyFam
    Newest Member
    FilbyFam
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • Scott Adams
      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
    • Scott Adams
      By the way, a few years back Nestle launched gluten-free DiGiorno pizza which also used Codex quality wheat starch, but due to backlash from the celiac community quickly reformulated and it is now wheat-free. Personally I think it's not a good direction to go, considering the many alternatives available now.
    • Scott Adams
      I just want to mention that a colonoscopy would not be the test for celiac disease damage, was it an endoscopy? It is not unusual to do either or both tests as a long-term follow up, especially if you're having issues. I fully understand you not wanting to go through a gluten challenge, and would be curious why they would request that part of your follow up--perhaps they questioned your original diagnosis?
×
×
  • 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.