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

Been a&e today, please help me

Claireboo

By Claireboo
in Dermatitis Herpetiformis

 Share

Recommended Posts

Claireboo Newbie
Claireboo
Posted

Hello, 

this is my first post and to be honest I’m shocked I’m here. 

I have no stomach problems and felt generally healthy up until a few weeks ago. I am now broken. 

Ive had an itchy scalp for ages but recently it got infected. The doc treated the infection but since I have broken out in the most horrendous rash which I think is D.H which just stared on my scalp

It started as small red spots, watery blisters that pop under the lightest touch. Now huge raised crusty lumps. All itching to my bones and sometimes burning. 

I have been docs 5 times in two weeks and today a&e as I feel completely desperate. I’m scared, anxious and a shell of the person I was last month. 

I keep mentioning the gluten rash to people and they’re brushing it off, saying it’s viral, a reaction etc. I feel crazy as I 100% tick every box for this. I’m also light headed and my eyes hurt.

So my question would be,how do I get help. What do I say? 

Ive had a gluten blood test so waiting on the result. I’ve been referred to dermatologist but that could take 12 weeks. This is consuming me and I’m so scared it could take forever to get sorted. 

thanks in advance 

xx

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Hopefully you were eating gluten regularly before you got the celiac disease blood test. Wait and see what the results are, and then you can consider your next steps. In the meantime, perhaps you can get on a list for an open appointment should someone cancel, or try to push them to move it up, as 3 months is a long time to suffer if you have DH.

Claireboo Newbie
Claireboo
Posted
  • Author

I definitely was eating gluten so fingers crossed! 

Also thank you so much for your common sense advice. I’ve rung and chased this morning and they’re seeing me as an urgent tomorrow. 

My head is so fried I needed someone to tell me to do that! 

squirmingitch Veteran
squirmingitch
Posted

What country are you in? You need to see a derm NOW & get a biopsy for dermatitis herpetiformis. 60% of us with dh test negative on the celiac blood panel. You MUST keep eating gluten every day until the dh biopsy.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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. trents
      - trents replied to Tarp's topic in Related Issues & Disorders
      5

      Celiac related issues

      Diabetes type 1 or type 2? Type 2 diabetes has a statistical correlation with celiac disease. The B vitamins work in synergy with one another so I still would recommend a B-complex. This may also help your anemia which is evident from your low ferritin, hematocrit and hemoglobin. Your "chest pain arm pain and burning with increased weakness in...
    2. Tarp
      - Tarp replied to Tarp's topic in Related Issues & Disorders
      5

      Celiac related issues

      I thought I had osteoprosis but did not find it on my record. I know I have stenosisof the spine. I also have Sarcoidosis and diabetes.
    3. Tarp
      - Tarp replied to Tarp's topic in Related Issues & Disorders
      5

      Celiac related issues

      I am 64. I have struggled with a combination of diarrhea and constipation most of my life. Yes I have osteoporosis. I have been taken magnesium citrate with calcium and d 3 and zinc. I take b12 and my latest blood work showed it to be high 2000. My other blood work showed low rbc, hemacrit, hemoglobin and Ferrin. My gastroentologist didn’t say anything j...
    4. trents
      - trents replied to Tarp's topic in Related Issues & Disorders
      5

      Celiac related issues

      Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries? As you probably know, celiac disease damages the lining...
    5. trents
      - trents replied to Tarp's topic in Related Issues & Disorders
      5

      Celiac related issues

      Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries? As you probably know, celiac disease damages the lining...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,329
    • Most Online (within 30 mins)
      7,748
    Carogo61
    Newest Member
    Carogo61
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac related issues

      By trents · Posted

      Diabetes type 1 or type 2? Type 2 diabetes has a statistical correlation with celiac disease.  The B vitamins work in synergy with one another so I still would recommend a B-complex. This may also help your anemia which is evident from your low ferritin, hematocrit and hemoglobin.  Your "chest pain arm pain and burning with increased weakness in my legs" would seem to correspond to the areas of your spine where you have had surgeries. My observation is that spinal surgeries seldom prove to be successful in the long term as they usually don't address underlying degenerative problems.  I will attach embed an article which may be helpful to you in eliminating gluten from your life. There is usually a real learning curve involved in achieving gluten free eating habits on a consistent basis as gluten is hidden in so many food products where you would never expect to find it and can be masked by terminology such "food starch". Eating out is the number one way to sabotage your efforts to eat gluten free as even when you order things that are naturally gluten free they often become cross contaminated with wheat back in the kitchen by being prepared and handled along with wheat containing foods. Another factoid that you need to be aware of is that for mature adults, it typically takes 2-3 years after achieving a consistently gluten free diet for the mucosa of the small bowel to experience complete healing. However, considerable improvement in symptoms usually occurs in a matter or weeks or months.  
    • Tarp
      Celiac related issues

      By Tarp · Posted

      I thought I had osteoprosis but did not find it on my record.  I know I have stenosisof the spine.  I also have Sarcoidosis and diabetes.
    • Tarp
      Celiac related issues

      By Tarp · Posted

      I am 64.   I have struggled with a combination of diarrhea and constipation most of my life. Yes I have osteoporosis.  I have been taken magnesium citrate with calcium and d 3 and zinc.  I take b12 and my latest blood work showed it to be high 2000. My other blood work showed low rbc, hemacrit, hemoglobin and Ferrin.  My gastroentologist didn’t say anything just told me to go gluten free and check blood in 3 months. I have had 2 lumbar disc surgeries and 2 cervical spine surgeries    
    • trents
      Celiac related issues

      By trents · Posted

      Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries?  As you probably know, celiac disease damages the lining of the small bowel which typically results in malabsorption of vitamins and minerals. This, in turn, can result in bone demineralization and as well as neurological disorders. Because of your spinal surgeries, it might be difficult to sort out what is causing what. Are there nutrient deficiency related neurological problems going on? Are there nerve impingement problems going on from the surgeries? Both? Having said that, it's a pretty safe bet that you would do well to invest in some high potency vitamin and mineral supplementation to address the malabsorption problem. We routinely recommend a high potency B-complex, magnesium glycinate or magnesium citrate (not magnesium oxide), D3 (5000 IU daily) and zinc. Most of these in this list are vital to neurological health. Make sure all are gluten free. Costco's Nature Made and Kirkland Signature products are a good choice and reasonably priced.
    • trents
      Celiac related issues

      By trents · Posted

      Welcome to the forum @Tarp! Some more information would be helpful. What is your age? What led you to investigate celiac diagnosis 11 years ago? What were your symptoms then? Do you have osteoporosis/osteopenia? What areas of the spine have been involved with your four surgeries?  As you probably know, celiac disease damages the lining of the small bowel which typically results in malabsorption of vitamins and minerals. This, in turn, can result in bone demineralization and as well as neurological disorders. Because of your spinal surgeries, it might be difficult to sort out what is causing what. Are there nutrient deficiency related neurological problems going on? Are there nerve impingement problems going on from the surgeries? Both? Having said that, it's a pretty safe bet that you would do well to invest in some high potency vitamin and mineral supplementation to address the malabsorption problem. We routinely recommend a high potency B-complex, magnesium glycinate or magnesium citrate (not magnesium oxide), D3 (5000 IU daily) and zinc. Most of these in this list are vital to neurological health. 
×
×
  • Create New...