Posted Sun 9 Sep 2018 8.50pm by Jason1985 (edited Sun 9 Sep 2018 8.53pm by Jason1985)
Hi guys for a few years I have been suffering with Psoriasis (solely on my face and scalp) which gets much worse whenever I eat gluten, my clothes are often covered in my flaky skin. During this time I also suffer from chronic fatigue and depression no matter how much sleep I get.
I keep trying to persuade my doctor it's gluten containing foods that are the cause of my Psoriasis but she just tells me how great wheat is for fibre etc. It's no coincidence that 90% of my redness and flaky skin goes away each time after about a fortnight of avoiding gluten and I feel I have more energy. How do I get my GP to understand? It's as if these GPs are told to say wheat is great when for some of us it causes our immune system to attack us.
Posted Sun 9 Sep 2018 9.02pm by OhNo_NotAgain? (edited Mon 10 Sep 2018 9.03am by OhNo_NotAgain?)
Apologies if I am not understanding something clearly.
Can you not cut out gluten from your diet for a few months, see what happens and then tell your GP. If it improves your situation greatly, you might not even need to go back to your GP.
If you do alredy feel better after 2 weeks of avoiding gluten, why not simply continue, why go back to consuming gluten?
And of course if your skin clears, well who cares what your doctor thinks? You have no need to convince them of anything if you have successfully improved your condition.
Posted Tue 11 Sep 2018 7.41pm by Jason1985 (edited Tue 11 Sep 2018 7.44pm by Jason1985)
Thanks for the replies.
Yes without a doubt I have gluten intolerance, obviously it's not as bad as full blown celiac disease which can have more severe symptoms and be fatal.
But each time I eat gluten within about 2 days my Psoriasis starts and the longer I consume wheat products the worse my condition becomes, everyone I know notices it.
Not to mention the chronic fatigue, brain fog, depression and anxiety (all of which because of Psoriasis causing inflammation?)
I first heard about gluten intolerance when Novak Djokovic found out he was gluten intolerant, I don't think he had Psoriasis but complained of chronic fatigue even after some sleep and it dawned on me. So I cut out gluten and 90% of my symptoms went away gradually over a period of days and weeks.
And yes wendyloish to your reply I know about the gluten free craze & I don't advocate a gluten free diet for everyone as most people can tolerate these grains very well and enjoy their taste. But some us, unfortunately myself cannot consume them and it causes these inflammatory responses in the body. Not sure about cutting out dairy though. I really enjoy milk products and feel fine consuming them. I don't feel that they cause me any problems at all. I'm certainly not lactose intolerant.
Thanks for the replies.
Posted Wed 22 Jan 2020 8.13pm by hainiej
Cannot go swimming any more
Hi, your story resonated with me. After advised I had a wheat allergy I went on a 6 week gluten free diet and it cleared my psoriasis. It came back because I didn’t stick with it. I’m now back on it but after 3 weeks I’m not seeing any difference this time. Will stick with it and report back
Posted Sat 1 Feb 2020 9.57pm by benpinder91 (edited Sat 1 Feb 2020 9.57pm by benpinder91)
Looking to find answers and remedies to help cope with the self consciousness of guttate psoriasis
I just found this website and your post. Last year I was diagnosed with IBS, I cannot eat gluten as part of this. Around October time, just before the diagnosis, I also developed guttate psoriasis. I am 28 and have never experienced this before. For me, both things seem to be related. I have been following a strict diet for a month now which is cutting out several things gluten being one of them. But I don't seem to see that much of an improvement with my guttate psoriasis.
I use E45 cream twice a day which worked well at first but now seems to have little effect. Most of my back, chest arms and face are covered with the rash. I . am planning on asking to see a dermatologist and try UVB treatment. I also join a gym with a sauna so I will see if this helps.
TBH I find it really upsetting that I have this guttate psoriasis and it makes me super self-conscious. I'm happy to have found this website and to know I'm not alone in these issues. I hope to find a way to manage this soon. I welcome any advice.
Posted Sat 1 Feb 2020 11pm by PonkieG (edited Sat 1 Feb 2020 11.06pm by PonkieG)
@jason it may be coeliac disease, not just an intolerance. I thought I was just intolerant because my symptoms were mild, so it is important to get the proper blood test done (though you have to eat gluten leading up to it which isn’t ideal!)
Since going strictly strictly strictly gluten free (can’t even share toasters with ppl) my psoriasis has calmed so much. Used to get it allll over and now just have patches. Hope you get some breakthroughs!
@ben sorry to hear you’re struggling with it. It can be such a nightmare!
As a veteran (I’m 31 and had it since I was 2) I’d say e45 isn’t the best moisturiser, and also not sure saunas are good for psoriasis? May work for you as we all react to different things!
Does your skin have scale on it? If so you could use exorex and then 30 minutes later put a moisturiser like diprobase on? (Never use acqueous cream).
Light treatment for me is the only thing that really worked to fully clear me. But cutting out gluten (and accepting that I am just a person with a skin disease and that’s who I am now so - f*ck it! - type thing) definitely helped!
You are not alone with this psoriasis b*llocks
Posted Sun 2 Feb 2020 9.49pm by benpinder91
Looking to find answers and remedies to help cope with the self consciousness of guttate psoriasis
@PonkieG thanks. Yes, it's a little scaly in places. The worst part is it is on my back and my arms just don't reach there to moisturize. I need some sort of arm extension device.
I read somewhere that sauna can help so I am willing to try it, I just don't like taking my top off anymore as I feel self-conscious but I am just having to accept it and do it I guess. The same for the gym or at work. I used to wear short sleeve shirts but now I always have my jacket or jumper on as it is all over my arms :(
I will try these creams thanks they are all so expensive, can they be gotten on prescription?, and I will enquire about the light treatment with my GP.
I also read that taking stuff like omega 3 and vitamin d can help so planning this also.
Posted Mon 3 Feb 2020 6.49am by PonkieG (edited Mon 3 Feb 2020 6.54am by PonkieG)
Yes definitely take a decent dose vitamin d supplement every day! That will help for sure.
Exorex can be prescribed, yep, and is only really useful if you need to remove scale. For moisturisers if you want one now I actually love childs farm (unscented) you can get from boots for like £3. Unfortunately it’s a case of you trying different ones to see what you like best.
Exorex and moisturiser just calm the skin down - you’ll probably need another treatment cream or UV light to completely clear it (try and avoid steroid creams unless you are desperate because it always comes back worse I find when you try ween off them!)
See if you can get referred to a dermatologist ASAP. A good GP should arrange that, especially if you are suffering with it all mentally.
I bet ppl don’t notice or care as much as you think they do but I still totally get it. At least you have the winter months to cover up (and these cold seasons also make vitamin d and moisturiser extra important!)
Do you know why you suddenly got guttate psoriasis? Quite often it can be caused by an infection, like strep throat. Or psoriasis loves a bit of stress. So if there’s an underlying cause that may need to be addressed too... attack from all angles!
In my case I had a tonsillectomy (I needed one anyway), light treatment and psychodermatherapy combined - this is the extreme version after 29 years with it haha
Tip: ask behind the counter in boots or Superdrug for vitamin d supplements cos they’re about £2 instead of £7 then
Posted Tue 4 Feb 2020 8.15pm by Amber
I have scalp psoriasis and it leave me with horrible flakes on my clothes especially wearing black is a nightmare. I’m so embarrassed by it. I have it at the back of my neck but in my scalp. It’s stiff, itchy and irritated. I’ve started using coal tar shampoo first day today. I didn’t blow dry my hair as well but it’s still stiff.
On top of this my hair loss is crazy at the moment. Any advice on how I can manage this is it a diet matter?
Please any advice and help would be great
Posted Tue 4 Feb 2020 9.58pm by PonkieG (edited Tue 4 Feb 2020 10.02pm by PonkieG)
It’s so annoying!
Coal tar shampoo is good to remove flakes for sure. I find sometimes it’s quite severe so I use a soothing conditioner afterwards (just discovered Salcura sensitive and dry scalp conditioner which I love)
To remove flakes I also like to sleep with pure coconut oil rubbed into my scalp, then I wash it in the morning and don’t always need coal tar (I like the break from the smell sometimes). If you use normal shampoos try not to use any with too many perfumes in.
To remove serious scale you can also use cocois or sebco ointment, again to sleep in or leave on for a few hours before washing off. It really works but only needed for quite thick scale I’d say. And it smells! (But nice to ppl who like the smell of petrol!)
I also alternate with a ketaconazole shampoo, which is anti fungal. Psoriasis tends to like sweat hence it loves the scalp!
Make sure you leave medicated shampoos on for long enough (5 mins +) - I sit in the bath!
Another tip, I always make sure I fully dry my scalp after I’ve washed my hair because I find it less itchy afterwards but everyone is different.
My dermatologist says diet doesn’t have much to do with psoriasis, though I reckon if your body already doesn’t like certain foods it probably does. Any immune system reaction and psoriasis gets involved :D so for me it is gluten, but again it’s person by person.
In general they say to avoid acidic foods cos they dry the skin - orange juice, strawberries etc - but I personally haven’t noticed that. Unfortunately it’s a case of cutting things out one at a time to test it for you. In the meantime hopefully the medicated shampoos can help!
Ps try not to worry too much about the flakes. Maybe avoid wearing black just so you’re not thinking about it too much when you’re out and about. Don’t want psoriasis being on your mind all the time. No one really notices, but I know we do ourselves!
Let us know how you get on :)
Posted Tue 4 Feb 2020 10.04pm by Amber
@ponkieg thank you so much for the advice definitely going to try the conditioner. Mines isn’t that bad big I still just want the flakes to go away and the stiffness in the back of my scalp. I’ll definitely keep you posted on how I get on.
Posted Wed 5 Feb 2020 8.57am by LukB
I also tried to avoid gluten for one year and it helped a little. But since four months I completely avoid all food which contains starch and it helped a lot. Psoriasis was nearly gone sometimes - but it's hard to accomplish this kind of "Keto-Diet" (no wheat, potatoes, rice, alcohol, ..).
Would be great if anyone else has good experience trying it.
Posted Sun 9 Feb 2020 5.48pm by Amber
Just a little update I’ve bee. Using the coal tar shampoo for a week now three times a week. It’s cleared the stiffness in my scalp where the psoriasis is but my scalp still feels itchy and flakes fall im so fed up of it now. Don’t know what else to do. I feel like my hair gets greasy as well quickly and hair loss too.
Are there any vitamins I can take that will help that are safe to take. I’m really struggling with my self esteem because of this psoriasis I feel like people will notice all the flakes falling and I can’t wear black 😩
Any advice would be great.
Posted Sun 9 Feb 2020 6.04pm by PonkieG
Sorry to hear that, Amber.
Definitely start taking 25 ug daily dose of vitamin d. Everyone with psoriasis should take vitamin d supplements!
Did you try sleeping in coconut oil, then brushing the flakes out as you wash and dry it? Unfortunately the more you wash hair, the greasier it gets. But if you calm the flakes the hair loss should stop.
Have you spoken to your gp? It might be worth getting cocois or sebco to really attack the flakes?
Posted Sun 9 Feb 2020 6.15pm by Amber
Hi PonkieG, thanks again for your quick response.
I’ll start talking vit D tablets. Are the ones from Holland and Barrett ok?
I’ve been using coconut oil and sleeping with in overnight. I do feel it’s made a difference but the hair loss is mad I feel like there’s so much dryness in my scalp after I wash my hair and dry it and I can feel my hair snap :( driving me mad.
The gp gave me steroid cream is the same as cocois and Sebco?
I’ve also noticed my eyelids are a bit dry is also cause of the psoriasis?
Posted Sun 9 Feb 2020 7.24pm by PonkieG
Yeh any vitamin d tablets should be fine!
Are you using a good conditioner after washing? To make sure the hair doesn’t dry out.
Yeh I get psoriasis on my eyelids. It likes it there... unfortunately hard to treat. Unscented Non perfumed moisturiser probably best for now and it should disappear when the rest of your skin clears.
Steroid works really well (once you have removed the flakes so it can get to the scalp) but be careful cos it comes back easily once you stop using it. You will need to ween yourself off when the time comes.
Sebco/cocois are thick coal tar treatments that remove really thick scaling. Only needed if the flakes are really thick, otherwise treatment won’t actually reach the skin.
Scalp psoriasis is the only psoriasis you’re actually encouraged to remove scale from (properly with coconut oil or coal tar), so then you can treat the skin underneath.
A soothing conditioner (like the salcura one) should really help the hair condition. What are you currently using?
Posted Sun 9 Feb 2020 7.31pm by Amber
Thanks for all the advice. I’m using the L’Oréal conditioner which is probably not that good to use I assume. I just don’t like my hair smelling like medicine.
On the eyelids it’s only a little dry and it comes and goes. In the summer I didn’t notice it at all it’s been more so in the winter.
I thankfully don’t have thick scale for me it’s more the itching and flakes falling that’s what I want to get rid off.
How often should I use coconut oil? I use the raw vita coconut oil is that one ok to use?
Posted Sun 9 Feb 2020 8.15pm by PonkieG
Oh yeh I’d avoid L’Oréal like the plague. Far too perfumed. Some baby conditioners can be easier on the skin - child’s farm range at boots Or something? Perfume aggravates the skin. I know you just want to avoid smelling of coal tar! There should be some less harsh conditioners that still have a good smell.
Did you also try washing every other wash with ketaconazole rather than just always coal tar? It’s an anti-fungal/anti-dandruff shampoo and it doesn’t smell as bad at all.
I just use coconut oil once at the weekend to soothe my scalp. Depends on how you feel. If your scalp feels dry and tight (I find it does after coal tar) then you can use coconut oil to moisturise it. Anything 100% pure is good, so make sure no added perfumes etc.
Posted Sun 9 Feb 2020 8.45pm by Amber
Which conditioner do you use or recommend?
Also where can u get ketaconazole?
Honestly your advice so far has been amazing so good to know I’m not the only one who feels this way about psoriasis.
Posted Sun 9 Feb 2020 9.15pm by PonkieG
No problem! Psoriasis is the worst cos it makes you think about it all day!
I like this https://www.allbeauty.com/gb/en/1168779-salcura-omega-rich-formula-conditioner-200ml?abref=GoogleShoppingCsGoogleUkSandgoogleUkB&utm_source=PLA&utm_medium=CPC&ref=%7Badtype%7D&gclid=CjwKCAiA-P7xBRAvEiwAow-VaT1ypCW-G5a7C8cnr5WP-sVd3ToFJB9ftiWH2y9FyOK2HoOntha57hoCxEkQAvD_BwE
Salcura conditioner, but it’s quite expensive. But it soothes and moisturises so much.
A make called child’s farm do conditioner (Available at Boots) - that I find to be ok (it’s for babies so is quite sensitive).
Ketaconazole Shampoo can be purchased over the counter from any pharmacy, but again it’s £7-8 so you might want to get it on prescription.
Keep us updated!
Posted Sun 9 Feb 2020 9.29pm by Amber
Thank you so much I will definitely keep you updated. Hope you have a good week.
Posted Tue 11 Feb 2020 9.46pm by Amber
Just a quick update so I’ve now been using coal tar for almost a week and I’ve switched my conditioner to a less perfumed one. The itchiness has slightly got better but I can still feel some itchiness and flakes falling and tight skin on the back of my scalp.
I feel as the day goes on it’s gets worse and after two days when my hair becomes greasy it’s uncomfortable. Also I’ve noticed my hair has become so static which I hate.
I’m at the end of my limit I just want this to go away or get some relief. My doctor hasn’t been that great.
Am I doing anything wrong in my own personal treatment. Any advice would be greatly appreciated once again.