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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,627
    • Most Online (within 30 mins)
      7,748

    kathrynhmarks
    Newest Member
    kathrynhmarks
    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

    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.