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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,015
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.