Anyone else not impressed with NHS treatment of Dermatitis Herpetiformis diagnosis?

[Lexy]

Just yesterday (a full 4 months) after the initial consultation at the dermatology clinic, I got a kind o' confirmation of the long-suspected diagnosis of Dermatitis Herpetiformis. The specialist did not at any point give a name to the condition I have, but mumbled that the skin biopsies and the symptoms I had presented which had ameliorated with cutting out gluten from my diet indicated 'a condition which could be treated with Dapsone'. Now, I know it's used for leprosy but unless the symptoms are identical I do not have leprosy! I found it very weird that I was sat in silence in the specialist's office for precisely 5 minutes, having waited half an hour past my appointment time, only to be told I had to go for yet another blood test (without being told what for) and then to get my prescription of Dapsone filled. Oh and by the way, 'some people take a bad reaction to the tablets'. That was it. No talk of dietician or any indication that I might need to check any kind of vitamin levels etc etc. I found it all very weird and disconcerting. The specialist was obviously running late and almost pushed me out the door, albeit with a smile on his face, and into the arms of the nurse - who eventually told me I was getting a blood test for glucose levels. I truly hope that nobody else gets this kind of treatment. If I didn't know how to research the web for reliable information and find helpful groups like this I would be none the wiser, and I certainly would not have known to either become gluten-free or stay gluten-free. Very very unsatisfactory. Off to collect my prescription of Dapsone, which needless to say the hospital chemist didn't have in so they had to send out for it... Ah well.

[Hidden]

Hi there Lexy, Cheer up, that sort of care is pretty normal for some. You need to see letter sent to gp about what YOU reported (even if you didnt ) If you get a copy it could be a shorter cut down one just to kid you. Tricks of the trade its called. Keep your cool and try to get full information.More problems are caused by not telling patients all. Mind you some doctors like the power over patients fortunately not all. Intelligent doctors sometimes lack understanding and common sense. Hope all goes better for u. Wait till you find out THEY think it in there heads, put it on computer it has been explained to you. BUT guess what, they actually have NOT told u. If you havent experienced this yet, dont fret you will. Hope this makes sense to u, as it wont to some. So chin up and plod on.

[Lexy in reply to Hidden]

Hi Osborne, thanks for the reply. It just felt so surreal... I guess after months of being on this site and having so much useful and helpful feedback on all sorts of issues I just felt stunned that 'the medical profession' showed itself to be rather lacking in the communication department! I can't believe I wasn't actually told the name of the condition I apparently have!! Isn't that just absurd?? Anyway, have started the Dapsone treatment. Must admit it felt a bit strange... got that 'distant', as though 'wrapped in cotton wool' feeling again, which I haven't had for a long time. Hope it's not the the meds, and just my mind playing tricks on me. By the way, the same specialist I saw yesterday was the one who suggested I try 'spelt' flour when I told him I was following a gluten-free diet...that worried me rather...hm!! Hope you are having a great start to a lovely weekend! Cheers

[Hidden in reply to Lexy]

How come you didnt enlighten him about spelt flour, or did you.

[Lexy in reply to Hidden]

I was so taken aback that he would even suggest it I rather stared at him blankly, and by the time I got my thoughts together he had moved onto discussing blood tests... This specialist has a very disconcerting manner: on the one hand smiling a fair bit, on the other being extremely silent and reticent to speak (perhaps the smiling is a compensation for that?) and yet - because of what I know through my research - he seems to have asked for the relevant tests (blood tests, skin biopsies etc) which I can only correlate to Dermatitis Herpetiformis. I'll call my GP on Monday and see if they can give me the biopsy results and any further clarification as I'm not due back at the specialist until end of June. Cheers,

[Hidden in reply to Lexy]

Thought that is what happened, makes one speachless to think they could say such things. Couple months back fainted in hospital area...nurses great doctor bad attitude. in gp letter said advised more fluids. Why as he didnt do a urine test to see if dehydrated ( which I wasnt ) said I was ok over past year. I wasnt but he never asked. Im getting on so am used to such silly remarks. Will gp explain over phone nicely, if so your lucky. I have started to pay more interest in tests etc., and it isnt going down well at all. After all what does an old lady understand. Reseptionist already grumbling, saying we dont usually give a copy we tell over phone. I request printout then cant say I misheard. They wont be doing many blood test anyway so wont hurt to allow me copy.

[FionaGFG Administrator]

Hi Lexy

I'd suggest you make a complaint to PALS at the hospital. They are very diplomatic and will be able to ensure that you get a proper diagnosis in your letter from Doc to your GP.

Often consultants have no people skills yet you'll find they write you a lovely worded detailed letter that contains things that weren't even discussed at the appointment. Pretty barmy but it does happen. Also get your GP on side so he can talk you through the Dapsone and arrange any checks / apts with dietitians. Sadly these vary on the NHS. If you have GF questions were sure that people in this forum will be happy to help you.

[Lexy in reply to FionaGFG]

Thanks for the suggestion Fiona. I am still so disappointed that I'm still in the dark officially as to what I have. I'm phoning my GP first thing tomorrow and will see what that brings. May ask them about the PALS (haven't heard about that before?) and see what they say. I definitely want a chat re Dapsone - some info on the web indicates you need very regular blood tests because the liver is susceptible to damage in some people...scary stuff!!! Ah well, learning experience eh. The only positive thing was that the specialist was very dismayed that it had taken so long since our first appointment (January) for him to see me again (May)...he thought he would have seen me in March at the latest...You learn something new every day!

[Lexy]

Not much to report after finally getting an appointment with my GP. He still hasn't been sent the report by the consultant at the hospital! Although he did have the skin biopsy results, which were apparently 'inconclusive' but displaying enough white blood cells to indicate some kind of problem. The GP said that as Dapsone is normally only prescribed for Dermatitis Herpetiformis this must be what the consultant suspects. Still no mention of the relevance of being or staying gluten-free. Neither doctor mentioned diet, the significance of it, or it's wider implications. I am of course remaining gluten-free without question but it is weird that this is not brought up. If I was to suddenly start eating gluten products the Dapsone would really be less than effective, as far as I understand it. Oh well. We'll see what the return to the consultant at the hospital brings at the end of June!

[Hidden in reply to Lexy]

Lexy, Hope all is going well with you. Just stick with it and keep calmish. On the whole PALS have been really helpful, they dont mess about. Also I have had good advice and explanations from here. There is always someone who cares enough to help and understand.

[Lexy in reply to Hidden]

Thanks Osborne, the visit with the GP was pretty unenlightening. He basically had to look up Dapsone in his book of medications and read up before he could even guess why I had been prescribed it! He also said that his little book didn't say anything about blood tests while on a course of Dapsone. Again, not a squeak about becoming/staying gluten free and not a mention of dietician or any checks for iron, vitamin levels etc etc that I've read about on this very useful website. I am taking extra vitamins myself (Iron, vit D, magnesium, zinc, vit B etc). The one worrying thing is that I used to get the 'itch' within minutes (about 10 minutes) of ingesting gluten/being cross-contaminated, which was great cause it meant that I immediately stopped eating whatever it was. Now, with the Dapsone, I DON'T get the itch, so I carry on eating and then I get the really bad stomach problems which last at least 24 hours, and I get the blisters which last forever...So I'm not really impressed with Dapsone. Because I had almost completely eliminated gluten (except for accidental/unintentional exposure) I had stopped the itching and reduced the blistering, but now that I don't have my 'early-warning system' I get much worse reactions!!!! I will stay the course until I get back to the consultant but then I'm telling him all this and I'm asking can I come off the Dapsone unless he can tell me specifically why I'm on it. It's pretty unsatisfactory all round. I will ask why I have not been referred to a dietician as well. Thanks for your encouragement. I'm so glad to have access to this website !

[Hidden]

Lexy, have u tried coeliac uk, seems they have a leaflet on a blistering condition and something about Dapsone. Think u have to be member for some info.

[spider in reply to Hidden]

ive been GF for over 10 yrs (like really GF though. not buying gf baked goods or foods labeled GF. i eat only rice breaded chicken and drink oj. it sucks and to me food is only fuel not enjoyment.) after taking out gluten i was still getting reactions to fiber beans alcohols dairy yeasts and vinegar etc. so even now 10 yrs later i was getting bad flare ups ON MY FACE! im a good lookin girl and leaving the house has become emotionally painful! so i did some more research and by a stroke of miracle i figured out that IODINE CAN CAUSE FLARE -UPS IN GF PEOPLE! it makes sense though cause some dermatologists tell zitty teens so cut down on iodine. strangly i switched about a year ago to iodized salt (for reasons i dont remember). but looking back through that year i dealt with NUMEROUS YEAST INFECTIONS DOWN THERE, BACTERIAL INFECTIONS, AND PROGRESSIVELY WORSENING DERMATITIS. as soon as i switched back to Kosher salt (non-iodized) ALL OF MY PROBLEMS DOWN THERE STOPPED and my DH went into remission! im not even kidding! please take out as much iodine as you can! (includes-seafood kelp carragean eggs potatoes strawberries etc.) and most important --DO NOT BUY EGGLANDS EGGS IF YOU DO EAT EGGS CAUSE THEY HAVE 3X THE IODINE AS REGULAR EGGS! good luck and let me know if anyone makes any progress. . . . .

[tmoxon]

Hi Lexy

I have just come across your post when searching for something on the site, I must have missed it when it was first posted. I have both CD and DH, I was first diagnosed with CD and had all of the regular checks ie blood tests and bone scan etc. got an appointment with dieticans however by the time i saw them I felt I knew more than they did simply by looking on websites such as this one. When I visited my immunologist after the CD diagnosis I told him about the rash and he wanted to have me tested, so I had the skin biopsy which came back postive despite the fact i had been GF for about a year.

You might have got more answers than you had when you posted this question but I just wanted to advise that I have been prescribed Dapsone as well ( 50 mg a day) and what myself and my dermatologist suggested is that i take it just when needed so if my rash is bad then I take one or two tablets over a couple of days. Unfortunately despite sticking to a strict GF diet I am still getting the itchy rash and cannot get to the bottom of why it is still occuring which is incredibly frustrating.

My GP like yours had no knowledge or either DH or dapsone, however he was very good and asked me to give him a short while to research about it and has advised me that if I take it for any longer than a week then I will need to have my blood tested.

I hope that you have now received a lot more information, help and advice from your doctors etc, I had to see a dietican before my prescriptions could be sorted out and therefore if for any reason you havent I would go back to ask for this as it sounds as though you have CD as well if you are having stomach issues.

Hope this helps you and you are now feeling better

[Lexy in reply to tmoxon]

Hi tmoxon, thanks for getting back to me! Touch wood, things are going well. I eventually got to see a gp who knew something about dapsone and she was shocked I hadn't been scheduled for regular blood tests! She lined me up for one straight away. Since then I have subsequently come off the dapsone tablets because I wasn't feeling right taking them. I have once or twice taken a tablet when I've been accidentally glutened and the itching has set in. I've still not been referred to a dietician nor has there ever been any mention of becoming/staying gf! So I rather see myself as 'self-medicating' as all the info I have on becoming gf is through my own personal research, and through trial and error.

Basically, as long as I stay gf, avoid caffeine and a lot of dairy, avoid/limit processed food and as long as I'm in charge of what I put into my mouth things are fine! I'm still taking all the vitamins and supplements, I'm still excercising regularly, and so far my skin has really calmed down. I rarely get the itchy blistery eruptions, or if I do it tends to be one solitary eruption as opposed to multiple blisters in multiple places.

I'm really sorry to hear that being gf hasn't helped for you. How strict are you? I don't go by Coeliac UK guidelines because most of their 'acceptable' stuff definitely is NOT for me. I don't buy 'glutenfree' baked goods (I make my own) or 'glutenfree' ready-meals, I don't eat foods with xanthan gum or guar gum in them, I avoid caffeine and most dairy, yeast, soya and corn products. I'm still learning which beans, pulses, lentils I can tolerate - it's a slow process! Have you tried cutting out any of these? I have some coeliac friends and I can't believe what they eat/drink! Much of it I wouldn't touch and I don't eat with them or at their homes. Is it possible that you have other sensitivities which now react like gluten (eggs? corn? soya? pulses? nightshade family: potatoes, mushrooms, aubergine, tomatoes, peppers?). Forgive me if you have already looked into all these things. I'm just mentioning some of the things I have learned in the last 4 months or so which would not necessarily have occurred to me before.

Good luck tmoxon, I do hope you find a resolution to your continuing dh. I know just how debilitating, frustrating and infuriating it can be!

take care

[tmoxon]

Hi Lexy

Thanks for replying, glad to hear that you found a GP that was knowledgeable about Dapsone, although it’s incredible that you haven’t had any form of help with your diet or that anyone has mentioned that the only treatment is going GF if you don’t want to be taking Dapsone for the rest of your life.

I would be going back to the doctors and ask for all of the checks that are available to people with CD such as bone scans, testing for deficiencies etc. as it could be that like me you have both CD and DH its just you have been diagnosed the opposite way to me. Also you will be able to get prescription foods as well. I was lucky and didn’t have to take any supplements but obviously it’s nice to know that there hasn’t been any damage due to having these conditions.

I have had differing opinions regarding DH, both Coeliac Uk and my specialist who is an immunologist said that it can take up to 5 years for someone with DH to be free of it even on a strict GF diet. My dermatologist and some people on this website are of the opinion that if the DH occurs then it must be because gluten is still in the diet. I don’t know, at the moment my rash now seems to appear all over my back and across the front of both hips, it doesn’t feel as though it’s a blistering rash, although I do have the odd blistering type rash appear sometimes on the elbows and shoulders or knees.

With regards to working out exactly why I still get the rash, I have now been GF since my endoscopy March 2011 and I do get periods where I don’t have the rash but when my symptoms didn’t disappear completely as I had hoped I started to keep a detailed food diary. Luckily I work from home so have more time to cook proper meals and have never eaten any convenience foods even before I found out about the condition. I am afraid that the diary didn’t really help me really spot anything and in December I ate a normal half a scone to see what effect it would have on me. I didn’t come out in a rash and didn’t feel the effect of it much at all other than a bloated tummy several hours later. This left me even more confused as I had been strict with my diet and had felt at times worse than when I had purposely eaten gluten???

I am afraid that I don’t touch any of the cereals, codex wheat starch products etc. that CUK suggest are suitable, however I haven’t tried to stop eating the other things you mention, to be honest it all sounds too daunting and don’t know where to start. My husband has mentioned about us just eating meat and salad for a week to see if I feel any different then so perhaps that is the way to go. I feel really sorry for people who have to give up other foods as well as the gluten ones, I find going GF hard enough I am not sure how I could cope with cutting out other things.

Thanks very much for your help, I do appreciate it. I hope you get the support you need for the medical profession.