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

Negative Coeliac Biopsy But Possible Dh - Help

tiggy400

By tiggy400
in Dermatitis Herpetiformis

Recommended Posts

tiggy400 Newbie
tiggy400
Posted

Hi i have just had a negative stomach biopsy for Coeliac. I am awaiting a private consultation for DH which is on the 15th of Dec. I have been getting a strange rash on my elbow for years but it was never present when i went docs and he just said it sounded like a Herpes type rash but he needed to see it. To cut a long story short i also have stomach symptoms ie wind, mainly constipation but bouts of runs now and again. Non stomach symptoms are heachaches, extreme tiredness, lethargy and bouts of temper lack of patience.

My Gastro Doc has said he does not want to see me now till Feb. I have been gluten free for just over 3 weeks since i had the biopsy, i feel so much better, i lost 1/2 stone straight away, i am "awake" and not a nice thing to say but i go to the toilet once a day!! I cant remember when i did that!

The thing that i am not sure about is the DH, i only get it on the left elbow, small circles of red raised bumps that then blister and crust over, i usually pop the blisters so they go quicker.....not nice i know. This itches/burns until the blisters appear. My GP thought it was shingles but i can get this maybe 2/3/4 times a year.......can you get it so infrequent? And so mild and only on one side? I have had blisters on the arch of my foot but i dont know if this was the same thing as it did not appear to be "hard" underneath, but these are even rarer. I did notice though that before my biopsy i upped by bread intake and i itched all over, particularly my head but no other blisters or anything anywhere.

When having a skin biopsy does the rash have to be present, i know they dont take it from the rash but should i be eating wheat again before my skin biopsy? I really feel fed up and dont know what to do next.

I will try to add pics, please let me know if anyone else has had this problem.

Ps how do i add a pic lol!!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You do need an active lesion for them to be able to biopsy the area next to. The antibodies are found in the adjacent skin not the lesion itself. It would be unusual for DH to only appear on one side but not totally unheard of. Your description of the lesions does sound like DH, when they heal do they leave a purplish scar that takes a very long time to fade? DH has that type of scarring.

tiggy400 Newbie
tiggy400
Posted
  • Author
You do need an active lesion for them to be able to biopsy the area next to. The antibodies are found in the adjacent skin not the lesion itself. It would be unusual for DH to only appear on one side but not totally unheard of. Your description of the lesions does sound like DH, when they heal do they leave a purplish scar that takes a very long time to fade? DH has that type of scarring.

Hi Ravenwoodglass,

i would say they are more of a redish/purple mark after, which eventually turns white, if i could add a photo i could show you when they are active. I had pasta and bread last night for the first time in 3 weeks so will see what happens next, although i think mine is very mild.

thank you for your reply

ang1e0251 Contributor
ang1e0251
Posted

I get 2 different rashes when glutened badly, that's initially what made me think celiac. One rash started on one side and later the other side matched it. The other rash, the one with the blisters, I only get on one side. I sometimes have those on my scalp also.

tiggy400 Newbie
tiggy400
Posted
  • Author
I get 2 different rashes when glutened badly, that's initially what made me think celiac. One rash started on one side and later the other side matched it. The other rash, the one with the blisters, I only get on one side. I sometimes have those on my scalp also.

Hi

well to update i had homemade Lasagne and Garlic Bread saturday night.......not the gluten free stuff i have been making but the real thing......was lovely!!

Except i had a really upset stomach the next morning, had a headache all afternoon and i could not stay awake today at work and feel pretty tired and low...........so i am so confused i dont know what to do.

Does everyone have the rash all the time or like me only about 3/4 times a year which is going to make a biopsy hard to get?

mushroom Proficient
mushroom
Posted
Does everyone have the rash all the time or like me only about 3/4 times a year which is going to make a biopsy hard to get?

My DH gets gastro symptoms all the time with gluten, but has only had DH (I am sure that is what it was) once on one side of his forehead. His symptoms were just as you describe them. It was enough to make a believer of him not to cheat.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi

well to update i had homemade Lasagne and Garlic Bread saturday night.......not the gluten free stuff i have been making but the real thing......was lovely!!

Except i had a really upset stomach the next morning, had a headache all afternoon and i could not stay awake today at work and feel pretty tired and low...........so i am so confused i dont know what to do.

Does everyone have the rash all the time or like me only about 3/4 times a year which is going to make a biopsy hard to get?

You just did a gluten challenge and the results were positive. You may find you have a new lesion at some point in the next week.

The rash with DH and the frequency of outbreaks can vary even within one persons experience. When I was a child I would have the rash all over my legs and arms for months at a time, the only time it would heal was with heavy doses of prednisone and then it would reappear a couple months later. In my teens it was mostly on my face and in the crooks of my elbows and knees and would be present more during the warmer months. In adulthood the lesions moved to my scalp, jawline and across my shoulders with rare outbreaks on my fingers. I did almost always have a lesion of some description.

I would reccommend making an appointment with a derm and talking to them. They should be willing to fix it so that when you have an active lesion you can come in immediately to have the area adjacent biopsied.

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

Celiac.com Sponsor (A8-M):


Archived

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

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.