Hidradenitis suppurativa and cows milk.

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hi had HS for about 16 years and have always had suspicions about it being food related because years ago i was told not to have cows milk well after cutting it out completly my lumps which years ago were quite small and undiagnosed cleared up, whilst on hols in Blackpool a health expert told me that usually you can slowly introduce the food back into your body, so i did not having any idea at the time that it could have anything to do with my lumps. years have past my lumps were diagnosed as HS the specialists saying it is nothing to do with food allergies but how can they say this when no one knows why you get it or how to treat it. So I did my own research and this is what i have learnt about my body. When under stress my lumps play up when having cows milk my lumps play up. I booked a week of work to just chill out so there was absolutely no stress however I ate and drank food with milk in and by the end of the week all my previous lumps filled up and opened. So now yet again I'm back on soya milk and cutting out any food with cows milk in it, all my lumps have gone down and feeling great. We know our own body more than anyone so listen to it. Please be aware though that this may not be the case for others as we are all different. :lol:

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  • Posted

    Hi, I am the same, I have noticed that when dont eat diary products my condition gets better, less itching, lesions, and the bumps go down. My right underarm almost looks like a normal healthy underarm at the moment. (My left one is covered in scars, so never will sad ). I would love to know what the link is, why diary products, particulary milk agitates it.
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  • Posted

    Hi,

    It would be helpfull I think if Doctors did more food test. My Dr and specialist both refused me one which I think is such s shame. I have also noticed that if I get run down or pick up a cold (which has happened this wk) my lumps flare up again and the last 2 times I have also had a rash on my upper back and chest can't understand why. Had to go to the Hospital today as my surgery would'nt entertain me because could'nt hardly walk from the pain, usually hot baths work for me to open the lump up, very painful just to sit so am standing. How do others cope with work would love to know. Take care.

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  • Posted

    Hi again forgot to say even though the Nurse whe treated me today was lovely yet again another one who has'nt come across HS this reminds me again how rare it is and how little is known.
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    • Posted

      I'm a nurse myself, and I had never heard of this condition. When I started to get it I didn't have a clue what was going on. I saw the GP and this condition was never mentioned; I was prescribed antibiotics and a medicated skin wash, and advised to not use roll-on deodorant!

      ?I eventually got referred to a skin consultant at the hospital, who basically said I had the condition because I was overweight.

      ?I think it's a condition of which there's very little understanding, and it's probably very under reported too because people don't go for medical help. And really, on my own experience, there's little point anyway.

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  • Posted

    I have been clear of what I call my \"bumps\" for months, if not over a year. I just started drinking cow's milk on a regular basis and they've sprouted up again. Can't seem to get rid of them and started thinking about what may be causing it in my diet and realized it had to be the milk. Did a google search and sure enough I'm finding others with the same experience. I'm off the milk as of this evening and fully expect things to get better. Thank you for your post over a year ago! And isn't it interesting that the researchers and experts can't seem to find a definitive reason HS gets worse or better -- but individuals with it are finding the answers. Maybe there needs to be a bit more communication with those of us that have it.

    I don't know if this is true for everyone, of course, but if you have HS and also have an average to more-than-average amount of cow's milk in your diet you might want to reduce or eliminate it to see if it makes a difference. Cow's milk is the ONLY thing that has been different in my diet and I've had no stress or other factors that could have impacted this.

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  • Posted

    Hi guys, I've just had a quick read about this dairy thread. I have not been diagonsed for Hidradenitis Suppurativa, but I had been diagnosed with gram-negative folliculitis. I also have flare ups in my armpit groin area, and severely in the scalp, and sometimes on the face. I think that I am also suffering from the same skin disease. I kept a log of my food intake and I also found that dairy has a HUGE influence on flare ups. I actually went on holiday to usa where the weather was alot warmer , compared to London.

    Whilst being on holiday I totally reduced my intake of milk with LOADS of junk food (high-sugar) / high fatty foods, but a day after I went to starbucks I noticed several outbreaks all over, in my scalp/groin and armpit.

    Since I returned from holiday my scalp became increasingly worse and it left me totally upset and full of pain. By eliminating milk for a few days the condition totally cleared up and I was able to get a hair cut! I really believe there is a strong link with dairy and hidra, the best way to know this is to keep a log of your diet...!!

    I really dont know what to do about breakfast now? Can I drink Soy Milk or what? I dont have a clue if it will affect me? I cant avoid cheese either because im a veggie.

    I have been able to reduce inflammation quickly by taking turmeric / aryuvedic medcine!

    I have also create a log of my flare ups / medicine involved, I would be happy to send it to anyone if they would like to read, my email address is

    ****

    [color=green:94f8c29c6f][size=9:94f8c29c6f][i:94f8c29c6f][b:94f8c29c6f](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.)[/b:94f8c29c6f][/i:94f8c29c6f][/size:94f8c29c6f][/color:94f8c29c6f]

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  • Posted

    Hi

    It is reassuring to find this thread regarding dairy products.I have had the burden of living with HS for the last 10 years and like most no doubt coping as best one can with the flare ups and more than anything trying to get answers.THe medical profession won't entertain the thought that it can be related to food or more specifically dairy which I believe is a shame.

    Whether it is the dairy product itself or whether it is something to do with the processing which is what I am more inclined to believe does need to be researched as far as I am concerned.

    What leads me down this road in my experience is this:My Flares tend to coincide with periods when I eat ice cream.I am not a prolific ice cream eater but do go through periods when I will have a dessert after a meal which is ice cream based.My first inkling that it could be this was three years ago when I ate a large amount of ice cream one night with a distinctive flavour vanilla based,when the abcess erupted the odour was exactly that of the ice cream flavour,which says to me the body is getting rid of something it doesn't want in there.However this was dismissed when I suggested it and one carries on.Eruptions since then do coincide with similiar trends,Currently I am halfway through one of the worst episodes I have had after having desserts consisting of pie and double cream.It does make me think that there is something to the dairy connection.Although my condition is a constant (which maybe down to the fact I take milk in my coffee) this is the first flare up in one year which coincides with a few days when fancied desserts on a regular basis (3-4 days) which were predominately dairy based.A coincidence I think not.

    As an after thought this may help.Over the last year I have been relatively pain free with no eruptions but on two occassions the first signs of bumps coming up did show and all I did was to cover the bumps no cream just cover and made sure I ate what I call good food veg etc and a couple of early nights,they did go into remission.

    Stress I do believe plays a role as I tend to get a sweet tooth when I get run down but there are strong pointers that dairy is the trigger.

    Hopefully funding will be found somewhere to explore this avenue and save a great deal of suffering for people who live with HS.

    KJ

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  • Posted

    would not surprise me at all to find a link. cows spread TB in milk. this was discovered in the 1950s. look up TB hospitals there used to be many of them. cows today are still tested for TB and if they have it are put down.

    i worked on a dairy farm. with the best intentions farmers take the greatest care of their livestock. this includes medication and can include growth hormone. i think in the uk this is now illegal and no longer in practise but imported milk products will have it and a lot of other stuff that would be illegal to add in the uk.

    the production of cows and their feed including chemicals added to the grassland they feed on is intensive. the land is treated with fertilizers, the cows are treated and medicated (not saying its wrong if they are sick they need medicine) their skin is treated to prevent parasites their udders are washed in chemicals to prevent infection. then the milking equipment is chemically treated. it all adds up. nothing wrong the cows need to eat and be given medical treatment as necessary but i would either go organic or drink coco nut milk. i never looked into soy milk so many people say no one would touch it if they knew the production process.

    and yes i love my milk! i was brought up on a dairy farm so i have a bad habit to break. ideally just don't start children taking it they wont develop a habit.

    good luck everyone. just wish i didn't like milky coffee so much and fresh whipped cream on my chocolate cake and ice cream............

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  • Posted

    hi scuby.  thank god that i am right.  i have been suffering with this condition since about 6 years of age.  remember two particular outbreaks which still horrify me.  i am 54 now.  i have been eating a lot of yoghurts lately as i am losing weight and have just had one of the worst outbreaks ever.  under the breast as usual, and the vagina, as usual....i just asked a friend of mine had she ever heard of anyone being allergic to yoghurts. duh! DAIRY DAIRY DAIRY.  i thank everyone who has contributed to this forum as it is really so lonely knowing that your body is growing these pustules and cant really talk about it.  my g.p. thankfully knew what this was and it was the first time anyone had ever told me about it.  i went to see a skin specialist but the meds gave me severe diarrhoea to the point that i couldnt leave the house.  my beautiful husband is very supportive, but it is such a lonely disease. I will change to goats milk in the hope that things will improve.  i drink a million cups of coffee with milk daily and am hardly ever without an outbreak, which is unbelievably painful and humiliating as i am sure you know.  thanks to everyone.  i will get back in about a month or so and let you know how the goats milk has worked out.
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    • Posted

      Hi Deborah

      ?It is a lonely condition isn't it? I feel not only embarrassed, I actually feel ashamed, as if people will look at me differently if they know about it, or if they see it. It's not easy never being able to wear clothes without proper sleeves, or having to wear dark coloured things so that the pus leakage doesn't show.

      ?How did you get on with the goats milk? I tried it and I simply don't like the taste.

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  • Posted

    I discovered the link to dairy by accident. I've suffered with HS for many years, and tried lots of things, none of which really help. I stopped having dairy as an experiment for something else, and was quite surprised to see an improvement in the HS. I went back to dairy and the HS got bad again, so I stopped the dairy again and there was improvement in the HS again, so I'm certain there's a link. I then got tested for food intolerances and dairy was one of them. The medical world doesn't believe there is a link to dairy!

    I substituted soya milk for cows and was quite OK for a few years, then I started getting a few other things wrong with me; weight gain, constant exhaustion, poor concentration. I put all this down to work-related stress but after a few years it all got so bad, and then I was diagnosed with underactive thyroid.

    I've been on medication for that for about 5 years now, it has helped with some of the symptoms, however I discovered that soya products shouldn't be taken by anyone with underactive thyroid. So, I had to stop taking soya instead of dairy. Of course the HS flared up again. I did go back to soya for a while but it interfered with my thyroid! I then tried almond and hazlenut milks but they give me intestinal problems so I can't take them. I tried goats milk but actually can't bear the taste of it. 

    I'm a bit stumped by it all, so if anyone has any ideas I'd be very glad to hear them.

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  • Posted

    Yes you are right sane thing with me , milk

    Breads , anything with the ingrediebts like waffles ect. Once I stopped abd cut back no more flare ups. It is reaction to the foods .

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    • Posted

      I try to avoid dairy as it is cows milk does not digest / break down in the body that leads to intolerance ect. I eat other foods that have calcium vitd .
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    • Posted

      I'm finding it hard as I have intolerances to other things too, so it's difficult to find something to have in my tea other than milk.

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    • Posted

      Hi Caroline, I've not tried it in tea or coffee, have you? I've found that with all these alternative "milks" they separate in the tea and seem to almost curdle and then I just can't drink it.

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