Awaiting dermatitis herpetiformis confirmation following biopsy

[suek54]

Many thanks for that AC. .

I too have had awful hay-fever since very young and have taken antihistamine every spring and summer since then. In recent years I have changed to second generation antihistamines, which are not a problem apparently, but prior to that they were all on the 'bad' list. Now aged 72, there's not much I can do about the past, except keep my fingers crossed. 

However, recently I have reverted to older antihistamines at night because they help me sleep though the itches. Pretty sure I  need a higher dose of Dapsone for a while but my last appointment was cancelled, which means I have waited 14 weeks to see my derma specialist instead of 6 weeks - NHS problems in the UK are exasperating - but having read your attachment I think I might stop that habit. 

 

Thanks again for your input

Sue

[Lockgirl]

Thank you for all the feedback. To suek54 - I was taking Benadryl for itchiness but it caused my BP to skyrocket. Ended up the in ER. Had no idea this was a side effect. As of right now, I am off all medication. I have been looking into homeopathic teas for relief from common ailments.  

[trents]

@Aretaeus Cappadocia, I think the dangers to cognitive function of chronic "first generation" antihistamine use have been known or at least suspected for a long time. However, most people I know who suffer from allergies, including myself, have switched to using "second generation" antihistamines like zyrtec, allegra, or claritin which seem not to pose such risks and are also considered to be "non drowsy" alternatives.

[suek54]

Hi Trents, 

Cetirizene (aka Zirtek) has been my antihistamine of choice since it became available. I personally don't get on with fexofenadine (aka Allevia), it dries me out too much, including making me constantly  thirsty, which is not good with Addison's disease.

However, the old fashioned Piriton has been a godsend at night to help me get to sleep when I'm itchy. But if it carries an increased dementia risk I think I might save them for just occasional use.

I see my derma specialist in less than two weeks and will hopefully be able to up my Dapsone for a while. Im still on just 50mg and feel like I am burning through it in about 6-7 hours, possibly due to my steroids. 

Its all a trade off isn't it?

Sue 

 

[Aretaeus Cappadocia]

1 hour ago, trents said:

@Aretaeus Cappadocia, I think the dangers to cognitive function of chronic "first generation" antihistamine use have been known or at least suspected for a long time. However, most people I know who suffer from allergies, including myself, have switched to using "second generation" antihistamines like zyrtec, allegra, or claritin which seem not to pose such risks and are also considered to be "non drowsy" alternatives.

I don't know what is a "long time" in this context. A little over a decade ago, my kid's pediatrician advised us to give a benadryl with a second generation antihistamine to manage serious allergies. The Dr said to follow the dosing schedule for each of them independently of the other but not to double up on more than one of the same class.

Before there were any second generation antihistamines, I learned from experience that the several products on the market had varying degrees of efficacy, but the side-effects for me of feeling woozy and falling asleep were always proportional to efficacy. I would take the one or another based on how much side-effect I could afford on a given day. Benadryl was alway king - the relief was great but I knew I would have about half an hour to find someplace safe and comfortable to sleep, or else just sleep where I dropped. When Seldane came on the market it broke out of the efficacy=side effects ratio and changed my life. When they took it off the market for safety reasons, I read up on it and decided it was worth it to me to buy as much as I could get and then I would run the "sponge-worthy" calculation until I eventually ran out. Luckily there are a number of somewhat efficacious non-sedating antihistamines on the market today.

[knitty kitty]

Hello all,

Some B vitamins have antihistaminergic properties!  Are any of you taking a B Complex supplement?

Thiamine B 1 has the ability to cause mast cells that produce histamine not to release it.  If your Thiamine stores are low, mast cells develop an itchy trigger finger and degranulate histamine at the slightest provocation.  Thiamine helps mast cells not to degranulate and not release histamine.

Niacin B 3 has anti-inflammatory properties.  Niacin improves skin health and lowers inflammation.  Niacin (flushing) and niacinamide (nonflushing) will help improve dermatitis herpetiformis and the itchies.  

Riboflavin B2, Pyridoxine B 6,  Cobalamine B12 and Vitamin C act as antioxidants and clear histamine, breaking it down so the body can eliminate it. 

Vitamin D helps regulate the immune system and correction of low Vitamin D will reduce inflammation caused by high histamine levels.  Vitamin D should be 78-100 nmol/l.  

As @Lockgirl mentioned, there are natural plants and teas that act as antioxidants and lower histamine levels.  Ginger and turmeric can be made into teas or used to season foods.  Betaine in pineapple or supplements lower histamine levels.  Black tea, green tea and especially Oolong tea have anti-inflammatory and antihistaminergic properties and antioxidants which lower histamine levels.  Bilberry, lavender,  and Chamomile teas have antihistaminergic properties and lower histamine levels.

Eating a low histamine Autoimmune Protocol diet will help.  This includes eliminating high histamine foods like processed meats (smoked, cured meats, bacon, hams, etc.), processed gluten free facsimile foods (gluten-free breads, etc.), fermented foods and canned foods.  High histamine levels can be found naturally in foods like strawberries, citrus fruits, and nuts.  

Do think about supplying your bodies with the  vitamins that are needed for the body to function properly first.  Subclinical vitamin deficiencies can linger for years.  Supplementing with the B Vitamins and Vitamin C is beneficial.  They are water soluble and can easily be depleted when we're ill.  Doctors aren't knowledgeable about nutrition and the beneficial effects of  supplementing with vitamins.

[suek54]

That's really interesting Knitty Kitty, thank you.. I had been thinking about starting a BVit  supplement  after my blood tests next week - my annual Addison's blood tests include B12, as pernicious anaemia can follow on from Addison's. My B12 has been steadily dropping over the past few years but still within normal range. I shall be interested to see what it is this year. Vit D is also one I should probably supplement too. I wouldn't normally take it in summer as Im a sun lover (not a sun bather) and previous tests have always been good. However, while on Dapsone I am aware I need to be very careful with sun exposure. 

I eat almost nil processed food, I make everything from scratch, so at least one thing in my favour there. Although I confess, I do love a few squares of  dark chocolate.

My husband has been an absolute star through all my autoimmune problems. He now just eats the same as me,  enabling me to eliminate all gluten-containing foodstuffs from the house. I plucked up courage to eat out yesterday, for the first time since diagnosis in December.  I found a brilliant restaurant not far from me accredited by the Coeliacs UK. It was a great experience, no ill effects and nice to see my husband tucking in to loads if his gluten containing favourites. A call out here to all our long suffering and lovely partners and friends. Coeliacs would be even harder without their support. 

[knitty kitty]

You may get more benefits from taking a B Complex supplement with "activated" forms of B vitamins.  About half of all Celiac carry the MTHFR gene which makes turning dietary and regular B vitamin supplements into active forms difficult and slow.  

I like Life Extension Bioactive Complete B Complex.  It contains already methylated (active) forms of Folate and B12, and activated forms of other B vitamins, Riboflavin and Pyridoxine.  

Vitamin B12 and Vitamin D can be stored in the liver for months.  Having B12 levels within "normal" range does not mean that other B vitamin levels are also within "normal" range.  

The fact that your B12 levels have been getting lower over several years may be reflective of lower stored reserves, and difficulty absorbing B12 from dietary sources.  Lower B12 levels can also be reflective of a deficiency in activated Folate, methylfolate, and problems turning B12 into the active form, methylcobalamine.  

Supplementing with additional Thiamine B1 in the form Benfotiamine is helpful as Benfotiamine has been shown to promote intestinal health and improves fatigue.  Benfotiamine can get into cells and mitochondria easily, which helps cells function better, and lowers inflammation. Thiamine is needed in the energy production cycle where B12 and folate are utilized.

Do keep in mind that you can have vitamin deficiencies before they are reflected by reduced blood levels.  Blood levels are not accurate measurements of vitamins.  The blood is used to transport vitamins from the digestive system to organs and tissues.  Blood levels can reflect what you've eaten in the previous day or two, or supplements taken.  Vitamins are utilized inside cells.  Vitamin levels in the bloodstream do not reflect how much of that vitamin is being stored and utilized inside cells.  Ask for an Erythrocyte Transketolace Activity Assay to check for Thiamine deficiency.  

Optimal levels for Vitamin D are between 78-100 nmol/l which is above levels accepted as "normal".  At optimal levels, Vitamin D acts as a hormone, regulating immune responses and lowering inflammation.  

The Gluten Free diet can be low in essential nutrients.  This, coupled with poor absorption, are good reasons to supplement the B vitamins.  The eight B vitamins and Vitamin C are water soluble and easily lost.  Supplementing with active forms is beneficial.

[Lockgirl]

Thank you to everyone for all the feedback.

I have started with the basic supplements suggested. 

I went yesterday to our local health food store and purchased some vegan choices to replace dairy. I did not realize that some products are fortified and have iodine added in.

 

Any recommendations for non dairy milk? non dairy cheese?

[Scott Adams]

On 3/13/2026 at 12:36 AM, suek54 said:

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

 

 

Not everyone with dermatitis herpetiformis needs to avoid iodine. DH is caused by gluten exposure, but iodine can worsen or trigger flares in a subset of people, especially when the rash is active or not yet controlled by a strict gluten-free diet. Some people react to iodized salt, seaweed, shellfish, or iodine supplements, while others tolerate normal dietary iodine without problems. In most cases, iodine restriction is individualized and often temporary, not a lifelong rule for everyone.