Awaiting dermatitis herpetiformis confirmation following biopsy

[suek54]

Hi

Im new to this game, so bear with me. 

May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis. Biopsy 6 weeks ago and Dapsone, which I seem to be tolerating OK so far. 

The NHS is in permanent backlog so no result yet but just wanted to say hello to anyone else with this maddening condition.

[trents]

Welcome to the the celiac.com community, @suek54!

Is the Dapsone getting the rash under control?

Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.

[suek54]

Hi,

Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application. 

And yes, giving the gluten-free diet 110%. Very careful about any cross contamination. 

This is my fifth autoimmune condition so well and truly on that bandwagon. 

[trents]

You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[suek54]

Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me. 

The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that?

Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day.

Life is very sweet, just so damn complicated sometimes! Hey ho, onwards.

Thank you again for your advice.

 

[knitty kitty]

Welcome to the forum, @suek54,

I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.  

I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.  

Interesting Reading:

Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide

https://pubmed.ncbi.nlm.nih.gov/10844495/

 

Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long

https://pubmed.ncbi.nlm.nih.gov/24437222/

 

Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

https://pubmed.ncbi.nlm.nih.gov/30390734/

 

Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra

https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.

 

Nicotinic acid therapy of dermatitis herpetiformis (1950)

https://pubmed.ncbi.nlm.nih.gov/15412276/

[suek54]

Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. 

The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. . 

Niacin B3 Very interesting too. Must have a good read about that. 

Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.

[suek54]

Hi all

Biopsy confirmed dermatitis herpetiformis. Strict gluten free diet going OK, I cook nearly everything from scratch anyway and am finding gluten free  adaptations for most recipes. 

I seem to be tolerating 50mg Dapsone well, regular blood tests OK so far.  Next derma appt in 8 weeks. I have some continuing itching and rash outbreaks, though nowhere near as severe as they were, so I am hoping for an increased dose, as the effect only seems to last 6-7 hours.  I think I may be burning through it more quickly than some due to other medication. Also I cannot mount a response to inflammation due to Addison's Disease. 

I hope others are finding their way though the minefield that is dermatitis herpetiformis. Hang on in there!

Sue (in UK)

[Rogol72]

Hey @suek54,

I also have Dermatitis Herpetiformis. I used to be on Dapsone but have managed to wean myself off it after many attempts. It's quiet a toxic drug, as it affects the bone marrow and red blood cells. It also artificially reduces Hemoglobin A1C. Mine was at 21 at one stage, I think normal is around 37. With dermatitis herpetiformis, you need to be really strict.

It wasn't until I focused on getting the trace minerals the body needs that I managed to get off it. I believe getting the thyroid numbers in the optimal range also helped with Iodine and Selenium. Iodine doesn't bother me for some reason, but flares others as knitty kitty said. I take Viridian Trace Mineral complex and it's made a huge difference, among other vitamins and minerals.

Now I can tolerate gluten free oats which I could never eat before. Though I only have them very occasionally in the form of gluten free soda bread . One thing I miss is my Mums Irish soda bread.

Hope this helps.

[suek54]

Many thanks for your reply Rogol72.  People have been very kind and made all sorts of suggestions. I am bearing them all in mind but at this early stage just desperately need to be itch free. 

I have literally had this horrid rash from scalp to feet. My most recent outbreak was all across my face as well. At one stage it was so widespread I was having very bad thoughts. Dapsone has changed that. 

I think my situation is worsened by Addison's Disease. I am totally steroid dependent. Its a constant trade-off between increasing steroids to cope with dermatitis herpetiformis vs increased risk of high steroids. I also have hypothyroidism. In fact dermatitis herpetiformis is my fifth autoimmune condition. 

Hey ho, I'm muddling through. Its nice to hear that others with the condition have found various ways to get back on track. 

I don't want to be on Dapsone a day longer than necessary but it's far better than the awful state I was in.  My dermatologist is keeping a close eye on my bloods. So far, so good. 

Thank you again for your advice. Very much appreciated. 

Sue

 

 

[suek54]

Hi again,

I have been reading a bit about iodine, some of you have helpfully suggested should be minimised to relieve the symptoms of dermatitis herpetiformis.  I don't think I have a very high iodine intake but probably reach the recommended daily requirement every day...I love dairy, eggs and fish. 

I have had hypothyroidism (autoimmune)for around 15 years, well controlled with Levothyroxine, and my thyroid blood tests are always exactly where they need to be.

Does anyone know how reducing iodine might affect medicated thyroid function? I feel like Ive got enough on my plate without upsetting my thyroid as well but need to keep a lid on the dermatitis herpetiformis if possible.

I also eat plenty of sea salt. I understand sea salt is not high in iodine. Unlike most people, salt does not adversely affect my blood pressure as I have Addison's Disease and struggle to maintain sodium levels. Low sodium nearly proved fatal for me twice so salt intake is non-negotiable. 

Anyone else out there poly-autoimmune like me?

Sue

 

 

[Rogol72]

I'm not poly-autoimmune but I do have Ulcerative Colitis, it was moderate to severe. I'm in remission for a long time, but have to be careful. I was told never to take an NSAID as they could induce a UC flare, and that I would accumulate more autoimmune diseases over time, but so far, only UC and Coeliac Disease/dermatitis herpetiformis. I've never taken an NSAID since UC diagnosis.

I don't know how reducing iodine could affect medicated hypothyroidism, but my T4 levels dropped steadily over a number of years to the borderline lower limit of 12 for some hostpitals in Dublin. Probably because of dietary restriction of cheese etc. That's why I started carefully supplementing with iodine as I don't think we get enough in the diet in the UK and Ireland, especially as Coeliacs. Fortunately, supplementing iodine has never caused a dermatitis herpetiformis flare for me. The relentless itch of dermatitis herpetiformis is terrible, so I know what you're going through. Dapsone was a godsend despite the side effects.

Might be worth speaking to your endocrinologist and dermatologist about iodine and it's possible affect on both conditions. 

[suek54]

Hi Rogol72

Thanks for your reply. 

I understand UC is pretty awful. Sympathies on that one. I mustn't take NSAIDS either.

Everyone who has replied to my posts has made various suggestions to improve the joy that is dermatitis herpetiformis and I have slowly been reading about them all.  Possible iodine reduction was one of them. Boosting various vitamins was another. As you say, I think I need to discuss further with my dermatologist and endocrinologist before making any changes. Its a trade-off, one condition against another, so often. 

Like you, I have found Dapsone an absolute godsend. I'm only on 50mg and so far my bloods have been good. It may be something to do with my steroids, particularly Fludrocortisone, but I seem to burn through the Dapsone in 6-7hours. After that the itches return. It feels like I could do with dosing twice a day. Maybe just an additional 25mg might do the trick mid afternoon, or I could split my existing dose half in the morning, half in the afternoon. Need to check with derma at next appointment. 

Take care

Sue

 

[Rogol72]

From what I've read in the medical studies, the TTG3 antibodies in the skin that cause the itch and blisters in dermatitis herpetiformis takes longer to dissipate over time than the TTG2 antibodies involved in the small intestine. I would also consider testing your Coeliac antibodies on a regular basis to see if they are coming down. Regular cheese of any kind used to set off my dermatitis herpetiformis and any meats like roast bacon which have Transglutaminase meat glue in them would also set it off. 

I started on 50mg and had to increase to 100mg ... 50mg twice daily ... then I switched to 100mg twice a week on the 4th and 7th day. I also take a methylated b complex.

Hopefully, everything will settle down for you over time.

[suek54]

Hi

May I ask how long you have had dermatitis herpetiformis and how long you have taken Dapsone for? All the info online seems to suggest needing Dapsone for between 1-2 years, gradually reducing thereafter.  Is that your experience?

Sue

[Rogol72]

Yes, that was my experience. I was diagnosed about 15 years ago, was on azathioprine for uc at the time. It took me many attempts to get off it, probably 10 or 15. It wasn't until I basically went on the AIP diet for a while that things got better. I got sucked into the gluten free alternatives rabbit hole ... eating gluten free breads, pastas and biscuits. I cut all that stuff out, and eliminated gluten free oats and dairy, pepper and spices. I just eat meat, fish, liver, fruit and veg. I was willing to do whatever it took to get off it. I think autoimmune patients with malabsorption burn through vast amounts of vitamins and minerals. Through trial an error and the great information provided by Scott and the mods here, I learned to supplement with the macro and trace minerals and b complex, vitamin D, Calcium, Magnesium and Zinc. Red meat is inflammatory for UC, so I limit that also. I'm a problem solver and like to understand how things work. 

There's a great podcast on Spotify by Dr. Robert Pastore. He's a Phd Clinical Nutritionist. He has Coeliac Disease and dermatitis herpetiformis and has worked with some of the top Coeliac Disease specialists at the Mayo Clinic on the importance of nutrition for celiac disease and dermatitis herpetiformis. I learned a lot there. He has several podcast episodes on dermatitis herpetiformis. Well worth listening to. If you google his name, the link to the podcast pops up on the search results.

 

[suek54]

Brilliant info Rogol72, thank you. 

I have further derma and endo appointments at end April/beg May. I need my B12/B9 results before any supplementing as they have been on a downward trend.  My brother had pernicious anemia (another autoimmune) so I need to eliminate that first. 

Thanks again. 

Sue

[knitty kitty]

@suek54,

Do get your Vitamin D checked as well.  Vitamin D is frequently low in people with autoimmune diseases including Celiac and Dermatitis Herpetiformis, Diabetes, and Addison's.   Do get Vitamin E checked as well because it can help if taking Dapsone.  

Check for deficiencies in B vitamins that can cause peripheral neuropathy beyond just Folate B 9 and Cobalamine B 12.   Pyridoxine B 6, Thiamine B1, and Niacin B 3 can cause that itchy skin feeling without a dermatitis herpetiformis blister.  Ask for an Erythrocyte Transketolace Activity Assay, a better test for Thiamine deficiency than blood.  Eighty percent of people with pernicious anemia and B12 deficiency have Thiamine deficiency.  

 

High-dose vitamin D in Addison's disease regulates T-cells and monocytes: A pilot trial

https://pubmed.ncbi.nlm.nih.gov/29522979/

The protective effect of vitamin E on the hemolysis associated with dapsone treatment in patients with dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/1739299/

 

I followed the Autoimmune Protocol diet as well.  It really made a difference for me, too.  

Autoimmune protocol diet: A personalized elimination diet for patients with autoimmune diseases

https://pmc.ncbi.nlm.nih.gov/articles/PMC11755016/

 

[suek54]

Thank you Knittykitty. That's a lot more reading to help me understand dermatitis herpetiformis. Its a steep learning curve. 

Im guessing you are in the US? I can definitely ask for those tests but in the UK currently the NHS is under such pressure, with such huge backlogs, I'm not sure whether I stand much chance of getting them. Still, we can but ask. 

Thank you again. 

Sue.

[Rogol72]

@suek54,

If it's of any interest to you, medichecks in the UK do private blood testing if you can't get them through the NHS ... https://www.medichecks.com/.

I've been researching into nutrigenomics and genetic testing relating to nutritional status. For example ... "The PEMT (phosphatidylethanolamine N-methyltransferase) gene plays a significant role in inflammatory bowel disease (IBD) through its impact on lipid metabolism and choline production, particularly in the creation of phosphatidylcholine (PC), a critical component of the intestinal mucus layer". Even though I eat eggs and liver which have plenty choline, I may not be converting the choline to phosphatidylcholine. So I've started supplementing. I haven't pulled to trigger yet but I intend on getting it done through a company in the UK.

If you're interested in looking into nutrigenomics, just let me know. 

[Lockgirl]

Hi Everyone, Haven't been on in a while, but through the rabbit hole found this topic. I have literally been covered with different levels of rash for the past 5 years. I have RA and am gluten intolerant. I do notice that I have become EXTREMELY sensitive to all medications. The rash escalates when I take any medication. I found the post about Dermatitis Herpetiformis, and I am wondering if this may be part of my problem. I am going to try to eliminate dairy and all the high level iodine foods, to see if maybe I can't get a little relief. I am in the US and have what would be considered decent health coverage, however, I just keep getting passed around the doctor spectrum. GP to Dermatologist to Allergist to Immunologist to Dermatologist, with no help whatsoever. I am gluten free and will start with the removing dairy and the iodine heavy foods. Does anyone know if there is a good egg substitute? Any advice on supplements? Much thanks!!

[Scott Adams]

Dermatitis herpetiformis could be worth asking about, especially since it is linked to gluten exposure, but it is best diagnosed by a dermatologist who knows how to biopsy skin next to an active lesion. Since medications seem to flare your rash, it may also help to review inactive ingredients with a pharmacist, because some fillers can cause problems for very sensitive people. For eggs, people often do well with flax egg, chia egg, or commercial egg replacers depending on the recipe. For supplements, be sure they are gluten-free, and don't contain iodine.

If you do have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[trents]

Yes, you need to get tested for dermatitis herpetiformis. But as Scott said, not all dermatologists know how to perform the biopsy correctly. Do some leg work first.

[Aretaeus Cappadocia]

On 1/26/2026 at 11:31 PM, suek54 said:

... The latter made me realise I had stopped taking my antihistamine, which I will restart today...

 

@suek54 I grew up with severe hay fever and have taken antihistamines all my life. Recently there has been research uncovering a downside to chronic antihistamine use. I'm not suggesting that you stop taking them as you clearly need them but you might want to review which one(s) and how much you are taking.

https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-20150128812