Hidradenitis Suppurativa and Gluten

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Has anyone ever tried to eliminate gluten from their diet to see if it improves/eliminates HS symptoms? I've been gluten free for almost 2 weeks and I've noticed a difference. It makes too much sense that gluten is the culprit, but nobody talks about it. Gluten is behind so many autoimmune skin diseases, yet nobody seems to think it causes HS. I'm pretty close to convinced that gluten caused my HS, which is an autoimmune skin disease.

I can't find anyone who has tried going GF. Since HS can be such a horrible disease, I don't know why more people aren't trying this. It seems like the answer is always antibiotics or creams, which are just putting a band aid on the problem (& actually antibiotics make the problem worse). I think the root of the problem is a hyperactive response by the immune system to gluten.

Thoughts? Stories?

Replies

  • Simplyunique25
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    Hi my name is quanah and I'm currently suffering from HS as well I just found out and its been crazy for me the last couple of day I went to my OBGYN on Monday thinking I had a vaginal infection and come to find out I tested negative. So I asked my Doctor what was causing my pain and he told me it was HS I had never heard of this disease until now, I've been looking on the web for something to cure it, and I just came across a forum talking about gluten and how this was affecting some people that have HS, so I thought about trying the gluten free diet to see if this helps
  • holli0224
    holli0224 Posts: 6 Member
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    I'm just now seeing this. I hope you stated a gluten free diet and it's working for you. Eating gluten free has completely put me in remission. I struggled with HS for almost 15 years and wish I would have known this sooner. Even the smallest amount of gluten will now jack me up so I avoid it at all costs.
    No matter what they tell you, think long and hard about getting on antibiotics.
  • marajade5
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    I think I have this too, been on antibiotics for 5 months now and it's cleared up - but a few months ago I was on holiday and didn't
    have enough with me and it came back again within 2 days...So dreading coming off them next month :(.
    Recently found out that my mum has it, and my granddad had it when he was younger. Will maybe look into gluten free now!
  • lindsayforlife
    lindsayforlife Posts: 93 Member
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    I have HS as well. For me, no dietary changes I've made in the past have done anything. Nothing at all. I've had them since I was 10 and 25 years later I've realized they are on their own sort of cycle, and nothing I eat makes any sort of difference at all. It sucks.
  • Shellz31
    Shellz31 Posts: 214 Member
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    I also have HS. It is an awful disease and my mother has had numerous surgeries to cope with her's, including removing sweat glands from under her arms.

    HS is all about imflammation, imo. I guess for some people gluten can cause imflammation. Gluten doesn't affect me at all. For me, cutting down (though not eliminating) dairy helped a lot, and using anti-imflammatory spices like turmeric has been a HUGE help. Birth control also helped me, so there's a hormonal component to mine. The abscesses I have don't go away, but they are very small now. The only time they start to swell is if I'm stressed about something, or during TOM.

    I think different things work for different people. Antibiotics never helped me or my mother, though I have a friend who says they are the only thing that helps him. Birth control did nothing for my mom, but helped my abscesses located in that female area. Eliminating gluten may help you, but I wouldn't assume it's THE answer for everyone.
  • rosieradiogirl
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    I've been gluten free and dairy free for 3 weeks and all of my sores have closed! My doctor was the one who told me to do start the TQI diet ( to quiet inflammation) I thought it was to simple to just cut out gluten and not have any more pain/sores but oh man it has been such a relief. After YEARS and YEARS of pain. Im Happy to see others have figured this out :)
  • bridgettejulia
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    My HS has been fairly mild and infrequent so far (like only a few times a year when I'd want to take advil for the pain - not that advil helps). I've found that taking zinc supplements has helped keep outbreaks to a minimum. I've recently tried a GF diet and have stopped taking the zinc. Since my HS is pretty infrequent, it's too early to tell if the GF diet has had an effect.
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    en.wikipedia.org/wiki/Hidradenitis_suppurativa

    Since it is a condition that has not got much attention from researchers must make it a hard one to treat. I know when out I cut out most all carbs including grain both my arthritis pain got much better the IBS totally cleared up.

    I am so glad some of you have found a diet change can help with or clear up Hidradenitis Suppurativa.

    Thanks for the info because I had never heard of the condition.
  • RodaRose
    RodaRose Posts: 9,562 Member
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    If you really want to go gluten free, get the gluten out of your kitchen as it is in the teflon, the toaster, the silverware drawer, . . . Also do not share condiments with family members (mustard, jelly -- anything that could accidentally contain gluten).
  • zombiekate
    zombiekate Posts: 5 Member
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    Hi - I was diagnosed with HS just a couple of years ago but I've had Celiac disease for at least 15 years. I am very strict with my diet. No gluten at all. I just started a support group on here for HS if some of you want to share your experiences. It is called Hidradenitis Suppurativa Survivors. Thanks ☀️