Dermatitis Herpetiformis Do you have to be glutened for it to return?

Hi I am wondering whether anyone with DH can advise me whether it will return even if no gluten is consumed.

I had just had a month on Dapsone, and rash disappeared, stopped taking the drug on Dr's advice and within 3 days its back on knees and elbows despite having no gluten as far as i know. As I dont have the major stomach issues associated with CD I am wondering whether I have had cross contamination somewhere based on the rash returning, I cannot seem to find a definative answer to the question "If I have DH could i suffer flareups even if I have not consumed gluten". This is an extremely important question for me as I am continually restricting my diet assuming items to a potential cause but maybe doing so unnecessarily if the rash could return due to stress or other factors.

I am continually questioning what I eat and are suspecting I have a hyper sensitivity as i am strict but still get symptoms. I am wondering whether its barley malt extract or maltodextrin which is present in some gluten free stock cubes could be a culprit as others have cited an intolerance. Any feedback on others experiences would be appreciated as only diagnosed April last year and the continual conflicting opinions I am getting are very frustrating. Thanks in advance.

22 Replies

oldestnewest
  • I am very sensitive to maltodextrin . I find it brings back the DH, as does traces of wheat if I get them after a flare up has died down. Another thing that brings them on is hair spray/shampoo with gluten in.

  • Hi Sappho - thank you for your reply. Your answer has prompted another question, is the DH rash when caused by the shampoo or hairspray just on areas that have come into contact with the shampoo/hairspray.

    thanks again

  • Hi Tony62

    I am also wondering whether I am highly sensitive. Straight after I had my endoscope I went gluten free and because I wasn’t receiving any support as I hadn’t been properly diagnosed and was unsure of what to eat, I only ate fresh ingredients i.e. meat and vegetables without any additives and did feel better for a few weeks. Once properly diagnosed I started to introduce foods such as bisto gravy granules/knorr stock cubes/tesco cornflakes which are approved for coeliac’s to eat. The dietician I first saw prescribed bread products with codex wheat starch and after a while of eating these rash flared up badly and now I only get bread products on prescription which don’t have codex wheat starch in them.

    Because my symptoms are not typical, i.e. upset stomach (I have any or a combination of headaches, sensitive to heat palms of hands and inside of mouth, rashes, feeling as though I can’t concentrate etc). it’s not as easy to spot if I have had gluten. Last month I had half an ordinary scone to see what would happen, I didn’t get any of my “usual symptoms” but my stomach felt bloated about 9 hours later. I don’t feel full of health as I thought I would do when I first was diagnosed so it might be that I have to look further into what I eat. I will have a look at the directory you suggest, to be honest it all looks so complicated. Can you recommend any stock cubes or gravy that you have found to not cause any symptoms?

  • Hi tomoxon, Fortunately I do not suffer from DH but am a super sensitive coeliac so if you are hyper sensitive then you will have issues with Tesco's cornflakes as they contain malt extract: Tesco cornflakes ingredients:

    Maize,Sugar ,Salt ,Dextrose ,Barley Malt Extract ,Iron ,Niacin ,Pantothenic Acid ,Vitamin B6 ,Riboflavin ,Thiamin ,Folic Acid ,Vitamin D ,Vitamin B12

    Coeliac who are super sensitive avoid all gluten and this is when it is harder for dieticians as they get their info from CUK who are happy with 20 ppm we call it life beyond codex because we do not eat malted products, codex wheat products, oats or even wheat deriv's. Wheat deriv's are the grey area for coeliac because in some countries corn is used to make dextrose and maltodextrin, like in the US but in the Eu wheat is often the source. People on a wheat free diet tend to avoid ALL artificial sweeteners like dextrose maltodextrin aspartame etc.

    As for gravies its very easy to make your own with stock and just thicken with a naturally gf flour and add dried herbs or you can buy specialist ones in most health food shops.

    This may interest you its a list of E no's and their side effects as sulphur is known to cause itching and rashes.

    dflock.co.uk/colitis/foods/...

  • How long have you been on dapsone for? It can take up to 3 years for a gluten-free diet to completely alleviate DH. It might be that you need to go back on it.

  • I have DH and have been biopsied. I've been gluten free for more than 4 years and have it as I write. I haven't had it in almost 2 years and then all of a sudden it came back. My understanding is that it can flare up from time to time after you have gone gluten free. I eat, what I believe, is 100% gluten free. I make all my own food and eat out rarely. I'm not a doctor, but I believe it is possible to have it flare up even when I eat gluten free. At least that has been my experience.

  • HI I have DH and yes my rash does sometimes come back (though not as severe as before) despite being gluten free and on Dapsone. According to my dermatologist gluten can stay in the body for 4 years or longer in some cases and occasional flare ups are likely even if no gluten is consumed. Dapsone is a long term treatment, 1 month will not clear the rash permanently - however Dapsone can cause nasty side effects and further health issues, you definitely need regular blood tests and supervision whilst on the drug.

  • hi, I have coeliac and DH. I was on dapsone long term but no longer take it as I have developed a reaction to uva light triggering aggressive eczema. I cannot prove it but to me it seemed to be triggered after getting sunburnt on a couple of occasions while on dapsone. there is some evidence of this being a very rare side effect in taking dapsone. As I am no longer on it I don't know if it is listed as a rare side effect. I now have to take steriods and Azathioprine daily to manage the eczema. However I no longer get the skin reaction for D. Every cloud has a silver lining strangely but I mention it just because I would probably prefer to go back to managing DH than the current condition so just in case be a bit careful of too much sun exposure when on Dapsone

  • I understand that DH never really goes once it is in the body. I have DH and I have CD. I can't take Dapsone because I have severe anaemia. I understood from my dermatologist (and from reading papers) that Dapsone needs to be adjusted to find the level - it isn't something that they should just stop, so did they abruptly stop you because they were nervous your red cell count was too low? Before diagnosis my DH was so bad that people were avoiding me - I looked contagious. Now I have little bits from time to time and nothing like pre-gf diet.

    My gf diet is quite fascist now. When I didn't eat anything except natural foods I made a complete recovery - my dermatologist was amazed and wanted to know what I'd done! But because I'm slightly OCD I'd researched as much as possible and avoided everything including glucose syrup, caramel, maltadextrin, dextrose, xanthan, etc. Since then, through trial and error I've found that Codex set off DH and that eating more than a couple of bits of gf free-from stuff in a week also did. I don't trust the CUK book, they allow too many risky ingredients - I've not been diagnosed long but in that time they've decided it was unsafe to have malt but now it's safe! (Hello???) The reason CoeliacUK added more foods is because the diet is so restrictive. When I relaxed my diet (after a telling off from the dietitian) to include things like gf stock cubes and (apparently) gf foods I had huge an increase in tTg levels - implicated in DH (which should have gone down or disappeared), so I felt annoyed that they thought I was non-compliant when I was actually following a diet THEY were recommending for coeliacs. Now I don't even drink alcohol (the grain might be safe but since BSE gluten is used to clarify wine and seal oak barrels.)

    I don't think your shampoo is the culprit (unless you swallow it), although sodium laureth sulfate, the foaming agent, is drying and a known irritant in washing and toothpaste products.

    There are things that set it off my DH - ibuprofen, too much fish, supplements with too much iodine. I also have bad problems with my mouth/throat/tongue which seem to be related to using fluoride products (my dentist went ballistic when I briefly avoided fluoride). I'd say don't have the Tesco cereal, eat natural and see how you get on, then you can gradually reduce Dapsone. Good luck.

  • Fluoride in toothpaste does helo reduce cavities, but the water you drink in UK is fluoridated as well. So not necessary.

    Many toothpastes contain low levels of gluten - I always use Kingfisher (available from Holland and Barrett) kingfishertoothpaste.com/ and did find that I got less gluten problems after switching.

  • Fortunately I live in an area where fluoride isn't added to the water supply, but yes, there is naturally low residual amount in all water supplies.

    I did try kingfisher toothpaste once, but it contains sodium lauryl sulfate. My toothpaste is gf. I don't think gluten is the mouth problem, but it does occur with halides as my current OCD way of eating is enabling self-monitoring of everything!

  • Thank you for all of the help and advice.

    The immunologist I saw last month prescribed me a months worth of Dapsone. I think his idea was that after the month they would check my blood, see if it had any effect on the rash and then decide whether to continue prescribing.

    Went I went back a month later for the appointment I saw a different person who said that he wasnt happy prescribing Dapsone and would prefer to do a biopsy just to make sure that it was DH. He was asking me how itchy I found the rash and said that if possible Dapsone was something to avoid if possible. Having said that, he gave me another months supply to take if I needed to, my husband who was with me mentioned it would be handy to take if going on holiday to get rid of the rash but after reading sgdean66's comments I am wondering whether it would cause more problems as we always holiday in the sun.

    I spoke to the specialist yesterday and he is arranging for me to have a biopsy. The blood results were back and he told me that they were fine apart from a low haemoglobin count, but nothing to worry about.

    I did find towards the end of the month of being on Dapsone that my legs felt heavy when I went for a walk and that I was getting water retention in them. I have had this before when travelling and when pregnant.

    With regards to the foods I am definately going to take all of your advice and eat naturally, just been to the butchers for bones to make a stock.

    I wrote to CUK regarding these issues and they have insisted that foods which are included in the directory are suitable for all coeliacs, but have said "we would always recommend that individuals seek specific guidance from their healthcare team"

    Anyway thanks to everyone who posted, you have been really helpful. I am taking your advice and hopefully I will see improvements in my health.

  • Hi. I don't have DH but I can't cope on a GF diet. I kept having flare ups and have worked out that it concerns all grains (corn, soya, rice) and if I take those out then I'm fine. But that doesn't mean missing out on anything, just doing more cooking and baking. But its worth it!

    Good luck

  • Dont have DH but do have coeliac i find that if i eat gluten i get and awful itch on my feet, hands, arms and legs, this isnt DH is it. I can scratch until i bleed, not very nice

  • DH will absolutely clear with a STRICT GF diet. Bear in mind if you are still exhibiting DH symptoms then you are still ingesting gluten. You are still far more likely to suffer with associated cancers from that consumption, even more so than just plain coeliac sufferers.

    The only solution is a GF diet, and to be honest this is not that hard these days, so please don't whinge. I'm a single male in my 40's and have been GF for over 15 years. I cook my own food, bake my own bread, (including pizza!) and even make cakes. If you are on this website then you have internet access and can easily search GF recipes, as I did. My skin, which used to be bleeding and weeping through my jeans and shirts, is now clear and healed. If you are still blistering then you are simply not following a GF diet, period. DH will not appear without your body producing the antibodies to gluten you consume.

  • Hi Alan thanks for your comments and help, it is always better getting advise from someone who is going, or has gone through the same experiences.

    I understand completely what you are saying however, I like you do all of the correct things, before being diagnosed I rarely bought readymade meals and tended to use fresh ingredients but sometimes used sauces in jars, i.e. Tesco pasta sauce etc. which I still use and as they are supposed to be gluten free. With regards to bread I get the long life bread on prescription without codex starch, make my own cakes and pizzas and I am lucky enough to have a husband who eats the same food as me apart from the odd bread roll so that the cross contamination issue would not be a problem. The only thing I do struggle with is gravy and stock cubes and I now use Antony Worrall Thompsons gravy and I was using Knorr stock cubes which are supposed to be gluten free but now have moved on to Kallo again also gluten free, (I did try to make my own stock with beef bones but it was extremely expensive, time consuming and tasteless).

    I had a biopsy of my skin on 14th March but haven’t had the results yet, as I had been on the GF diet for a year and the fact I had been on Dapsone the week before I had it, I am wondering whether it will come back with false results. All I know is when I am on the Dapsone my skin clears completely, however I had extremely bad cramp and water retention when taking the tablets so I am going to try to avoid taking them. I have had different answers to this question, the dermatologist said that if the rash was still appearing then I was getting gluten from somewhere and that it was almost impossible to eradicate, yet others have said that it can take up to 5 years for it to go ?

    Here is part of an email I received from Coeliac Uk when I asked the question

    Although a gluten-free diet is the most effective treatment for DH in the long term if can take an average of two years for it to take full effect, therefore drug treatment (such as Dapsone) is often needed until the gluten-free diet takes full effect. It is difficult to know whether the flare up you recently had was due to recent gluten ingestion or whether this is just because the gluten-free diet hasn’t yet taken full effect. Dapsone will only help control the skin itching and blisters, so it is extremely important to continue following a strict gluten-free diet alongside taking the Dapsone.

    Could you advise me whether you used stock cubes and readymade gravy and if you do which ones? Also did you try the long life bread and either didn’t like it or found that the rash still appeared? The only other things I have on a regular basis other than homemade food is Cadbury twirls and the odd glass of red wine.

    Thanks a lot for any help you can provide

  • Hiya,

    I use "Marigold Swiss Vegetable Bouillon" which comes in a green tub and from Morrisons. I love thick onion gravy, so slowly brown my onions before adding a spoon of Doves Farm GF and wheat free flour, I then add the bouillon which I made up earlier and cooled. It's lovely. I find my stomach reacts to the de-glutinised wheat flour in some GF flours, so the GF/Wheat Free one is whats needed.

    I never took Dapsone as the DH cleared up very quickly as soon as I became GF, and it has never returned. I think your wise to cook all your own food, as do I, so I'm sorry you are still experiencing DH over a year later.

    On the rare occasion I accidently eat gluten now I react terribly and feel so ill, almost like a bad gastric flu, but the DH has never come back.

  • Thank you for your advice, I will try this method of making the gravy.

    I am just learning as I go along and make a detailed food diary to see what reactions I get. I only get the wheat and gluten free flour and bread products and like the dove flour better than the prescription ones. I tend to use cornflour for yorkshire puddings ( it makes great yorkshire puddings) and for thickening things. My DH doesnt sound as bad as yours was, I am finding that I dont blister much now but my back is still spotty and itchy now. When I first found out that I could have CD, I started eating very simply (this was straight after the biopsy), I only had meat, potatoes, veg and no gravies or anything in any sort of jar, as I didnt have access to the dietician or CUK so just ate things I knew had no additives and I think my skin cleared so perhaps I need to do this again, I will try the stock you advise which will make life easier as I dont like dry food. As mentioned earlier I am very careful with my diet so it is frustrating to still be getting issues.

    thanks again

  • I was recently diagnosed with dh and I was told that no matter how much you faithfully follow your diet, the rash pretty much has a mind of its own. It can come any time. And this has been the case for me, although sticking to your diet is a help.

  • Hi Auntannie thank you for your message I think you are correct. Upon first diagnosis I thought that I would be symptom free, however its not been the case. I think I also flare up with dairy and sometimes alcohol, I really miss dairy as I love butter and cheese. Hope your rash improves and thanks again for your help

  • I just wanted to also let you know that I am on a strict fresh food only diet No dairy no soy,corn grains, sugar,olive oil only and I eat fresh meat, beans, veggies,fruits. And I. Haven't had a break out. I think trying to heal your body with this diet is the key. Then maybe down the road incorporate,some cheese and other so called gluten free foods. It's hard but it's so worth not getting that nasty rash.

  • Thank you for advising of this, I am afraid I struggle to eat that naturally but am strict with the gluten free, thanks for your help

You may also like...