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Dermatologist- don't get DH on face?

Posted , 5 users are following.

bettybetter
bettybetter

Hi 

I would be really grateful of some advice/help.

I'll give a bit of background... I've never been that healthy but I have had a 12 months of really bad health problems (non descript 'viruses' but I have been very, very unwell) which also coiincided with a very painful rash on my face (and scalp but less persistent) which would not budge with any treatments (7 courses of antibiotics and 6 of anti virals plus countless creams). I've had life long gastro problems- diagnosed with IBS at 11 which fluctuated over the years. I had naturally started to go off foods that contained gluten so have had a failry low gluten diet over the past 2 years which would usually increase over the weekend and especially on holiday which would match the times I would get very very ill.

I moved quite a bit over the past year so saw various GPs but with no real conclusions to what was going on. In Oct, I saw a new GP who mentioned coeliacs- I didn't know much about it but once I read about it, it seemed to be a possibility so I went back (to another GP) requesting to be tested. This GP said it was unlikely to be that and wanted to run other standard blood tests first. So I carried on eating as I was (which meant I had gluten free days about 50% of the time and ate the equivalent of 1-2 slices of bread a day max when I did eat it). When I went for my 'standard' blood test, it turned out I was getting a coeliac test too. I knew I should've been eating more gluten for that but just hoped if I had it, it would show. It didn't- apparently it came back 'normal'. So the GP said I didn't have coeliacs and that I was just to come back in 6 weeks if it hadn't cleared. Thanks doc. I pressed and pressed and he agreed to refer me to dermatology. 

So as I was getting nowhere with the Drs, I decided to just try eating completely gluten free as an experiment, just to see if it helped. And within 2 weeks my skin was completely clear and has stayed that way since (apart from some minor rash when I accidentaly ate gluten). I still have a few issues, mostly with fatigue but the majority of my problems have resolved- my stomach/digestion has never been better. I went back to my GP (to the one who first suggested coeliacs) to tell them about this and they weren't that helpful but after a bit of discussion, agreed to refer me to Gastroencology.

I had my dermatology appointment this week and took photos of my face and scalp rashes and tried to explain my history. However, I was cut off, and told to keep and open mind and not jump to conclusions. I was informed that DH is on the elbows and it doesn't appear on the face and that my rashes looked 'non specific'. After waiting 4 months (and an an hour on the day as they were running so late) I was only in the appointment for 5 minutes and felt so dismissed and not listened to.

Now, I'm not stupid and I had done my research on this. In everything I read, it states DH is usually on the elbows but can appear anywhere. So I just don't understand why the dermatologist was so dismissive. I'm just so confused! Can anyone give me more info about this? Can DH appear on the face/scalp?

I've still to get my Gastro appointment but I feel this is my last chance to try get some answers. My hope was to speak to them about what's happened and for them to advise whether to do the gluten test for 6 weeks to then be properly tested. But I'm worried I'll just be dismissed like I was at the dermatologist and I don't know whether I should maybe start eating gluten again for this to try show them something. (I think I also partly want to do this to test whether my skin/gastro symptoms will come back if I do) But having literally ate bread crumbs a few weeks ago (I accidentally used my husband's butter) and then suffered hours of the most intense pain I've ever known, followed by days of fatigue, which I think I'm still recovering from. I'm really scared to do this. I really feel a bit traumatised from that! 

I just feel I don't know what to do. I would really appreciate any advice about this. 

Thanks!

2 likes, 4 replies

4 Replies

  • sophie39764
    sophie39764 bettybetter

    Posted

    Hi, I just had to give a very quick reply as I have had a very simular situation to you. It's not been easy and I have had the same problems with doctors. I even came accross a Gasto consultant who told me that celiac only has 2 symptoms - and treated me as if I were mad - (weight loss and diarrhea). Not what I needed at the time - I can understand that GPs can't be experts in everything but did expect a bit more from a gastro chap. The only 2 doctors I know who have indepth knowledge of the subject both have husbands who are celiac - so they have done a lot more reading than most and neither of them think I'm mad at all.

    The long and short of my situation is - I have decided to take charge of my own health. I don't have an official diagnosis - but like you, gluten now makes me very ill (like 'flu without the snot' as I put it) - so I have opted to skip eating it for months on end to gain a possible diagnosis. My 'unidentifed rash' has greatly reduced thank god and slowly I'm getting more energy. It is taking longer than I expected though. I eat a very simple diet of veg, meat mainly. Just wanted to let you know that there are others in the same boat. I hope you get better soon Betty!

    • bettybetter
      bettybetter sophie39764

      Posted

      Thanks for replying smile

      Although it's not good to hear you've had similarly unhelpful experiences, in a way it's good to know it's not just me. I do worry I'm being a 'difficult patient' or wasting their time whenever I go to see any Dr. I always feel I'm imagining my problems or they're nowhere near as bad as everyone else's etc. So when this kind of stuff happens at the Dr, I just think my worries are right and I end up feeling silly for going and just shrink away and leave feeling really unheard.

      I need to knock that out of my head and maybe be more demanding! :D

       

  • Paige1310
    Paige1310 bettybetter

    Posted

    Hello bettybetter, i wanted to let you know that i have been diagnosed with dermatitis herpetiformis. It is an uncomfortable skin rash that comes from injesting gluten. To get the diagnoses, my dermatologist had to biopsy my rash which, at the time, was on my elbows and knees. But now the ONLY place i get this rash is on my face. Im sorry to hear that your doctors completely dismissed what you said because you are right. This rash can flare up anywhere on the body. Yes, most commonly on the elbows and knees, but i read about a patient that had this condition and her rash was on her eyelids. It is comforting to know i am not alone in suffering with this rash on my face. In addition to eating a gluten free diet, they perscribed me Dapsone, which helps control my DH symptoms. Hopefully by now you have been diagnosed ☺
  • cericruz45
    cericruz45 bettybetter

    Posted

    Hi. Just to let you know I have had DH since I was about 4 years old. It has moved it's self around my body throughout the years. I haven't followed a religious gluten free diet over the years but have managed to reduce my dapsone to only when I need it. Which is next to never these days (fingers crossed ). But when I do have a flare up it starts with a small blister usually on the side of my nose or my chin. So yes you can get it on your face. In fact through the years I've probably had it on every part of my body.

    Good luck.

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