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

Do your DH symptoms match this?


Allo-london

Recommended Posts

Allo-london Rookie

Symptoms: through day, random pin prick stinging in my skin. Could be anywhere. Feet, legs, back, occasionally face. Varies in degree of pain. No immediate sign of rash. It can feel "on the surface" of the skin, or "deeper" in the skin. Sometimes v painful, enough to make me jump. It's like being poked with a needle, or having a speck of hot fat from a frying pan land on you. Occurences of sudden itch also, or the stings are itchy themselves. Sometimes large patches of skin feel sensitive or sore for some time (hours maybe days). Like the other day a patch of skin on my back was just sort of sore/sensitive. Sometimes I experience what I can only describe as "waves of itch", almost non descript itching that you can feel but almost cannot describe where exactly. Around these times I tend to get red bumps on either side of my scalp. I think they may have vesicles that can pop (nice! but not pus, clear). I sometimes get them on my legs too. They are then sore, scab and take several days at least to heal up.

I have a raised ttg antigen level but a negative skin biopsy for DH and no villous damage on endoscopy. My skin sympoms cleared up for nearely 5 years when off dairy and gluten, but they came back recently. I need to know the cause.

Please, DH people, I know a lot of people ask, but I would really appreciate, if you can, do my symptoms sound familiar?! Do you get stinging or itching like this randomly but not on a rash/sores? And then the rash/bump/blisters elsewhere, or is your itching only physically at the point the rash?
 


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

The rash, for me, and I think for most of us from what others have said on here, the sensation follows nerves. I can get rash that itches like mad 3 or 4 inches from the actual lesion. I think it's following the nerve pathways. Before I had my first major outbreak of rash, yes, I would get those sensations like little pops of hot oil landing on my skin. Funny, I hadn't thought about that until you mentioned it.

Allo-london Rookie

Thanks for your reply. Really appreciated! Can I pry and ask before the first major outbreak, did you get the sensations around usual lesion sites (whereever they are for you) or elsewhere. I'm leaning towards I possibly have some DH going on, perhaps it is "mild" in that not the full blown itchy rash, though enough to get these lesions. Probably some peripheral neuropathy going on I am guessing here. Being extrenmely strict on my diet right now and things very gradually improving, not fun though. Pretty sure dairy provokes reaction as well, but maybe other things, also so called gluten-free things sometimes seem an issue.

squirmingitch Veteran

No I didn't. Actually my back broke out & it began down low, all the way across & then in hours it had moved right on up my back all the way up & across. At the time, I thought it was nerves (as in mental) because I was going through a terribly stressful time. The stress is undoubtably what triggered it. Then by the next day it had crawled over my shoulders & onto my upper chest. I had no idea at the time that it I had celiac much less dh. All I knew was that I was burning & itching like crazy!

Allo-london Rookie

Yeah, it isn't fun. At least you know the cause know and can take steps to avoid. Thanks again for your replies!

  • 8 months later...
Allo-london Rookie

Hi DH Forum - honestly I was really hoping for more people to answer my question. There must be hundreds of people read this with DH - maybe the greatest congregation of DH patients on the internet, and if so, the world and most likely the universe. Could you possibly please spare 1 minute to answer my original post?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,817
    • Most Online (within 30 mins)
      7,748

    Terry49
    Newest Member
    Terry49
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ABP2025
      Got it. Thanks Scott. I'll set up an appointment with a GI after the holidays and get all the celiac disease screening done. Thanks to this amazing forum and to all who have answered my question, I now know what my next steps are.
    • ABP2025
      Aah it sucks that there's no definitive way to confirm NCGS or celiac. I've found a GI clinic that is covered by my insurance and I'll contact them after the holidays to setup an appointment. I hope to get some sort of clarity with further tests. 
    • ABP2025
      Thanks @knitty kitty. I didn't know about thiamine deficiency before you had mentioned it. I'm doing more research into what it is and how I can test for that deficiency. Is Vitamin B1 test the best way to find it? I saw that there is another test: Erythrocyte transketolase activity coefficient (ETKAC) assay to test for thiamine deficiency but I'm not sure how that test is done. Is that something I can take on my own or do I need GI referral. If it does turn out that I'm thiamine deficient, does that confirm that I have celiac disease or could it just mean that I have not been consuming Vitamin B1 rich food and once I address that with a supplement or food, I would no longer be thiamine deficient? Also full disclosure, I'm a vegetarian and only last year I found out that my Vitamin D level was very low. It was 3.7 ng/ml and the ideal range is >29.9 ng/ml. After a year of taking multivitamin supplement, my Vitamin D level has gone up to 27 ng/ml. Though it's better than 3.7 ng/ml, it's still below the range. I'm not sure for how long my Vitamin D level was around 3.7 ng/ml before 2023 as I didn't have my Vitamin D test taken prior to that. My doctor also wanted to check my Vitamin B12 level as I might not be getting enough of it from vegetarian sources. When I took that test last year, Vitamin B12 was 247 pg/ml and ideal range is 200-1100 pg/ml. So it's still within the range though it's on the lower end of the ideal range. I also have recently started taking vitamin b-complex tablets daily. I've never checked other Vitamin B levels including Vitamin B1. Do you know if such a very low level of Vitamin D and moderately lower level of Vitamin B12 would cause celiac disease or may contribute to some of the symptoms I've been experiencing? Regarding the DNA test to test celiac genes, are you referring to HLA DQ2 and HLA DQ8 tests? As soon as I got the result where my IgG was above range, I had ordered the "HLA Typing for Celiac Disease" test in Quest Diagnostics which measures HLA DQ2 and HLA DQ8. The test is 2 weeks from now and I'll post my results here once I receive them.  
    • Russ H
      Small amounts of gliadin are detectable in some samples of human breast milk but these are at too low a level to cause symptoms. No gliadin has been detected in the beef of grain-fed cattle.   https://pmc.ncbi.nlm.nih.gov/articles/PMC5622696/
    • knitty kitty
      Welcome to the forum, @Kiwifruit, I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.   On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.   Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.   Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.   Best wishes on your journey!  Please keep us posted on your progress.  
×
×
  • Create New...