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

Dermatitis Herpetiformis


radgirl

Recommended Posts

radgirl Enthusiast

How do you know if you have this? Can it mild or does it have to be severe like the pictures I see on the Web. What does it look like/feel like, etc...? Where is it mainly located and how does it start up?


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



Celiac.com Sponsor (A8-M):



ItchyMeredith Contributor

It can be much milder than the pictures. Right now I have about 5 healing blisters on each knee and that's it. When it was at its worst I had probably 10 blisters on each knee, 10 on the top of each foot, 5 on each elbow, and 10 on each butt cheek. For me the blisters feel intensely itchy until the blisters start to heal. Luckily I am healing right now because I have been gluten free for 3 weeks.

I got diagnosed through a skin biopsy at a dermatologist and as far as I know that is the only way to properly diagnose it.

Good luck!

Tephie Apprentice
How do you know if you have this? Can it mild or does it have to be severe like the pictures I see on the Web. What does it look like/feel like, etc...? Where is it mainly located and how does it start up?

Mine never looked like the pictures. Mine aren't very itchy either. I would get an occassional water blister on my face, some red sore dots on my elbows, knees, the back of my legs, and I just started noticing them on my butt. The ones I hated the worse would be the ones on my fingers, they almost looked like blood blisters and the brown stuff under the skin would stay until it worked its way up to the surface, those ones were the most painful for me. I would say mine are mild, but when I do have them they hurt. My rashes were also diagnosed by a dermatolgist via a biospy.

Stephanie

barbara123 Apprentice
How do you know if you have this? Can it mild or does it have to be severe like the pictures I see on the Web. What does it look like/feel like, etc...? Where is it mainly located and how does it start up?

I have had DH for probably 6 years or so. They itch, can be painful and sometimes bleed. Prob due to scratching. the dr's all thought it was shingles. But had never heard of anyone having them on buttocks or so many breakouts. Usually about 19-15 per month.

They thought it was shingles on buttock but Lupus on arms and back. Never did they test for celiac disease. Since going gluten-free for awhile I am now having little to no breakouts. Off the pain medication and feeling much better

Belinda Meeker Apprentice
How do you know if you have this? Can it mild or does it have to be severe like the pictures I see on the Web. What does it look like/feel like, etc...? Where is it mainly located and how does it start up?

Mine came on my feet and hands and found out through hubby's and my GI doc. (hubby's appt) mine was DH, so that day I went gluten-free and they started to go away til I accendently got glutened :(

When they first start they itch like crazy and nothing seems to be there, so u don't really know wht it is til a day later a small round hard bump forms under the skin, then it will turn into a sometimes very painful blister and then as they start to go away they turn brown inside the blister and then u get a white popped looking blister (best if when they form blister take a small neddle and a Kleenex and pop them, I do so they don't continue to itch) >THIS IS ON MY BODY ONLY <

U could try Ting for the itching it does help stop it :) (found at wally world)

It can be any where I was told and it starts from being glutened the more I ate the worse mine got so try to keep a diary of wht u eat when u notice them come.

My hubby had it on his lower belly, buttox, knees, feet, hands,arms, chest and back

My son had it on his feet and hands

My middle son had it on his knees

My oldest son looked like he had the chicken-pox X3

So prolly depends on ur system mostly :(

I sure hope u get better and hope this helped explain the ?'s u asked !

Hope u find wht u have soon.

Good luck!

Belinda

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,482
    • Most Online (within 30 mins)
      7,748

    AmyJos
    Newest Member
    AmyJos
    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

    • knitty kitty
      @JForman, Did you know that Celiac disease genes can be traced back to the Neanderthals?   At times I have found it amusingly distracting to think that we're eating according to our ancestors who had eaten gluten-free for thousands of years, before those homo sapiens  started growing grasses all over the place.  (Yes, grains evolved from grasses.) Grocery shopping is now hunting-gathering.  Peeps that eat gluten are grass-growers.  Watch the movie "Caveman" starring Ringo Starr.  Never fails to remind me that we belong to the winning tribe.   Have fun with being different!
    • knitty kitty
      @Rejoicephd Getting glutened and gastrointestinal Beriberi have very similar symptoms! Drinking alcohol cleaves thiamine in half making it useless.   A twenty percent increase in dietary thiamine produces an eighty percent increase in brain function.   Symptoms seem to wax and wane mysteriously, depending on how much thiamine you absorb from your food on any particular day.  Thiamine deficiency is on a sliding scale.  The lower your thiamine , the worse you feel.  This can drag along for years.  Alcohol depletes Thiamine further.   Occam's razor. A Must Read: Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/
    • knitty kitty
      This article explains how thyroid problems and Celiac are connected... Celiac Disease and Autoimmune Thyroid Disease: The Two Peas in a Pod https://pmc.ncbi.nlm.nih.gov/articles/PMC9312543/
    • knitty kitty
      @lehum, I found great improvement by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne, a Celiac herself designed it; her book, the Paleo Approach, is very helpful!) Following the low histamine AIP diet, I cut out all nuts, all dairy, all grains and rice, all processed gluten free foods, Eggs, and all nightshades (potatoes, tomatoes, eggplant, and peppers because they contain glycoalkaloids that promote intestinal permeability).    A diet high in carbohydrates can encourage SIBO and Candida overgrowth.  Candida can often be confused for mold toxicity.  Candida and SIBO can disrupt your absorption of nutrients from your food, especially B vitamins.  Thiamine Vitamin B 1 influences the microbiome.  Thiamine keeps bad bacteria and Candida in check.  Cutting out carbohydrates, following the AIP diet, starves out the bad carbohydrate-loving bacteria and Candida.  Supplementing with the eight essential B vitamins and Vitamin C while you heal will help immensely.  Benfotiamine, a form of thiamine, has been shown to promote intestinal healing (no more leaky gut!).  Thiamine also helps overactive mast cells from releasing histamine at the least provocation (no more Mast Cell Activation Syndrome!). Blood tests for deficiencies in B vitamins are notoriously inaccurate.  The best way to see if you are low in any of the B's is to take them and look for health improvement.  Since the B vitamins are water soluble, if you don't need them, they are easily excreted in urine.   On the AIP diet, healthy Omega Three fats are important.  Our bodies run better when fueled with healthy fats than on carbohydrates.  Cook with olive oil or avocado oil.  Flax seed oil is also great.   Do get your Vitamin D level checked.  Try to get your Vitamin D up to 80 ng/ml  where it can function as a hormone and regulate the immune system and calm it down.  Yes, Vitamin D tests are fairly accurate.  Since fat malabsorption is common in Celiac, we often don't get enough of the fat soluble vitamins A, D, E, and K.  Vitamin A and Niacin B 3 are integral to skin health.  Magnesium and Calcium should be checked as well.  Magnesium is needed to make life sustaining enzymes with thiamine, and Calcium for strong bones. I followed this diet, supplemented essential nutrients, and felt better within a few weeks.  It took about three days for my body to adjust to running on fats, during which time I felt fairly poorly, but after that switch, improvement was rapid.   I still stick fairly close to a Paleo diet, and have added other foods slowly back into my diet once my histamine level came down.  I occasionally have Basmati rice - this rice is the least likely to cause a reaction.   I know it's a very strict diet, but it has been very much worthwhile.  It's going back to non-inflammatory,  simple to digest foods, as you would feed a sick child, allowing time to heal, then graduating into a wider variety of foods.  You can do it and be a success story, too!
    • FayeBr
      I have this so many times with products. Companies state online that their items are gluten free and then when I ask in an email, they always respond with ‘we can’t guarantee that it is, as we don’t test for gluten’ I had one recently with a bone broth that I enquired about. And dioralyte. I will include their advert and then their reply. It is so frustrating. More than frustrating. How are we meant to navigate the minefield without transparency? Thankfully I very rarely get Glutened. It is mostly soy that is the worst thing for me to avert. I react to it similarly but not for as long and mainly pain all over. And we know how that hides in things. I am still suffering and today was a back pain day with the usual gut and gastro symptoms. Aren’t we all lucky.  Still, we live to fight another day! 😊
×
×
  • 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.