Dietary Changes for Hidradenitis Suppurativa

The postings here reflect a tremendous problem and huge differences in level of understanding about the condition and its treatment. And it is not just patients who are confused and frustrated - so are the dermatologists, GPs, surgeons, ER docs, gynecologists and Infectious Disease docs who you have all met!

We have been working on the dietary side of the disease and are accumulating cases who have cleared with a diet very similar to the Paleo diet described here.

We insist on zero dairy - that is total zero dairy, even avoiding things like casein and whey in protein powders and snack bars - combined with a low glycemic load diet that allows no sugar and nothing with a Glycemic Index over 55.

The science behind this has developed immensely over the past 3 years but it has not reached the public yet - lots of resistance from physicians and surgeons who won't take the time to learn. Sad but true.

So why do I write here? Because this is where the people who suffer from this rotten disorder look for help.

And I write solely because I want each and every one of you to try six full months with this diet. I have nothing to sell. I do not want you as a patient - I'm far too busy to even consider that. Being anonymous allows me to set you on what I consider the right road without you needing to spend another nickel on doctors, prescriptions or travel.

It is often said that free advice is worth what you pay for it. I want to prove that wrong. All I ask from each and every one of you is that you report back here on July 15 and tell us all how you did. You can tell us all whatever else you did besides the diet, but PLEASE do the diet. Set your iPhone reminder, mark your calendar, count and diagram all your active spots/lumps/draining areas today and record your progress over the next six months, then report in here on July 15.

And if you would like to act as the control group, you could volunteer to keep doing what you are doing, tell us what dairy/sugar/flour/sweets you continue to consume and keep the same spot/lump/draining area record to tell us about in July. Help us all make medical HS/AI history.

The reason I am posting here is because I have managed to control, and very possibly kick this hellacious nightmare.

If you believe in the medical industry and big pharma, or are a professional victim, -move on, you won't like my post. If you have HAD it w/inept, moneygrubbing prescription writers who treat you as an R&D experiment, read on.

I have only gotten clues about this ugly, depressing illness after searching several alternative remedy sites. NO where have I seen positive results, cures, or relief from sufferers who have succumbed to western medicine treatments, therapies, surgeries, antibiotics or other products of big pharma. Also I would caution you to BEWARE of miracle products and cures. Do a google search on third party reviews concerning whichever remedy you are tempted to try. Remember to CONSIDER THE SOURCE.

The first thing you need to do is lose weight and alter your diet. If you're already fit, look at your diet.

Have you any abcesses or dental problems? Did this condition appear after a dental procedure? Likely the toxins are attacking your lymph nodes to exit your body. Don't expect this diagnosis from doctors. They prefer to give a reluctant prognosis years & thousands of dollars later, from what I've seen.

You MUST become knowledgable about EACH and EVERY thing you consume and ingest if you are truly serious about kicking this. If you scour the alternative remedy sites you will find different therapies you can try that won't break the bank. You must systematically eliminate poisons, fats, and probable allergens. You MUST be patient, as the results will reveal themselves SLOWLY.

Try to find an acupuncturist/chinese herb doctor, but question them about their familarity on this ailment. If they hedge, or forward you to a regular MD, they are of poor quality. It's probable one of them will be able to help you, but they are not infallible, and doctors ARE only human; THEY ARE NOT GODS. If they cannot be bothered to review or comment on what information you consider important, they will waste your time AND money.

There seem to be a number of causes for this illness, as individuals do not all share common successful therapies. Many things can cause your immune system to dump toxins. Your physiology is attempting to save your life!

I surmise no serious treatment is forthcoming for this disease because it gives the medical industry a nice nice fat arena in which to jerk around exhausted, ravaged sufferers while they clean out our bank accounts. Just like with cancer.

Though it is miserable and difficult, try to perservere, and know that I too suffered horribly from this hellish illness. The difference is, I do not trust these quacks and butchers after seeing the results of their handiwork on those who entrusted themselves to their "care". To witness the exact same results endlessly and expect different for yourself is just stupid.

Horrific pain and constant, protracted dealing with this living hell had me at my wit's end for months, but I DIDN'T stop seeking remedies or therapies THAT WORKED. I continued working my job and honoring my commitiments and responsibilites this entire time. No sooner would I get thru my door than I collapsed in exhaustion from the pain. I am not affluent by ANY stretch of the imagination.

If you have no discipline, then you are damned to years of this. It is hard, but if you do not surrender, you can kick this! Perservere!

But after trying everything by the book -- antibiotics, topicals, washing with a specific soap, trying to de- stress my life. Losing weight - and I lost 50 pounds. And finally the most invasive of all, surgical removal of tissue - I was no closer to a cure than when I started.

It was time for me to do the research. Articles, I read everything I could get my hands on. I read blog after blog and came up with some amazing information. In essence our bodies are screaming at us through the HS lesions. We have and are consuming a food group whether it be gluten or nightshades or dairy or eggs that are making our bodies attack themselves. Simple. Find out what the offending food is and remove it. Either by going to see a Naturopath for an IgE and an IeE food sensitivity tests. Or if you financially aren't able to do that, then simply put yourself on a diet of protein, simple salads and green vegetables. Once you have done that, introduce one food group at a time and wait to see if you flare. No flare. Wonderful, now try another and another until you isolate the group that causes you to flare. Be vigilant at looking at labels. Because I was sensitive to nightshades, I had to look out for paprika and it is in so many different foods. Vigilance.

If you are like me, you have lived with the fear of this disease on a day to day basis. You have kept yourself isolated for fear that someone might find out. The pain is so intolerable as is the stigma of this disease. But you can take your life back. You can be happy again. It is a process and it will take time and diligence. You deserve a chance at living a normal life. God be with you.

I have had 5 surgical removals and they still came back sometimes in the same spot, sometimes indifferent spots. They usually came up when I had mayonnaise which I found out I'm allergic to, they appeared less when I avoided mayonnaise. I later found out that I was allergic to dairy and tried to avoid it as best as possible, but when I completely took dairy from my diet they happened even less. I am not sure the cause of this last breakou.t I think it may have been an artificial drink that I had (I don't usually drink artificially drinks especially those with too much sugars) or a spike in flour in my diet. I know it wasn't caused by wheat because since I got rid of milk there's no need for cereals. I will be trying a lot of the tips I have read here and I will definitely track my progress. I'm also considering laser hair removal (if that has worked to help alleviate the frequency of breakouts please let me know).

i don't know for other people with hs but for me the worst part of this is having doctors constantly tell you that this is caused by bad hygienic practices and then making it look like you are a nasty person (My new doctor said that based on my current practices the only way I could be any cleaner is maybe if I locked myself in a sanitized bubble.)

Good luck to all and wish me luck please.

I have had HS for 16 years. I have had medical doctors ignore my pleas for help and only prescribe antibiotics - which incindentally, made the issue worse.

I have tried apple cider vinegar, coconut oil, antibacterial soaps, no soap... I can't even remember all of the things I've tried. Nothing worked. For years, I had no hope. The breakouts had gotten worse and the scars kept me in sleeves even in the summertime.

Then I found that HS is an autoimmune condition... Just like my Hypothyroidism, back and joint pain, etc. The puzzle pieces started coming together.

The best/easiest/cheapest treatment I've found is to change your diet to a paleo diet: meats, seafood, lots of veggies, fruit, nuts, seeds and quality fats. Since starting the paleo diet over a year ago I have not only lost 30 pounds effortlessly and kept it off, but I rarely get an HS breakout. If I do, it's generally very minimal and Turmeric, 2-3 times a day, in pill form usually clears it up in a day or two! Gluten tends to be the biggest trigger for a breakout, so I try to make sure my diet is completely gluten-free.

I honestly never thought I would be HS free! I thought I would live with this forever. But now, after just one year, my scars are starting to fade and I even have a couple of sleeveless tops that I like to wear!

There are so many people who have nearly erradicated their breakouts (including myself) by eliminating all grains, sugar, legumes and dairy from their diets - only to find other health benefits as well.

I'm so happy to be able to share this information with you all as I know what it's like to have lost hope for a treatment, let alone a cure! I urge you to do the research and give the diet/lifestyle a try for just 1 month and if you don't feel any better or notice a change (I bet you will, tho) then you've lost nothing.

It's feels so wonderful and amazing to have made it to the other side of this painful and embarrassing condition! Good luck to you all.

I've truly believed for some time now that food can be either a medicine or a poison. Although I've known this intuitively, I've never really tried to eat to the standards I knew I needed. I thought "now or never, ya gotta do it Susan! " So after two days of using the antibiotics (it just got worse anyway, which I knew would happen) I decided to cleanse out my system and give my body what it needed.

Here is what I did:

1. ) having read everyones praise about turmeric, I started take 1/4 tbs 3x day. (I've taken it before without much improvement, but have considered the fact that it might not be all I needed to do)

2. ) I only ate vegetables, mostly greens such as swiss chard, kale, spinach, and mixed salad greens. I sometimes would juice these to get more in one setting.
3. ) I drank distilled water with lemon added (roughly 84 ounces each day.
4. ) I took vitamin D and a multivitamin.
5. ) I avoided sugar, caffeine, nicotine, alcohol, meat, dairy and gluten.
6. ) I saw a naturopathic doctor who agreed that gluten-free dairy free was the way to go if you have H.S. She is currently looking into my blood work to see how we can adjust my diet to be more appropriate. Additionally, she has several H.S. patients that are in remission! A doctor who actually has positive feedback!!!

So the results: After two days of this my boil came to a head and started draining. After one week it shrunk to the size of a pea! Additionally, the rest of my smaller symptoms of H.S. are dried up and gone, my skin overall is smoother, my hair shinier, face glows more, and I have energy like never before! I'm not 100% yet, as I have days where I cheat (I'm only human ;) but I strive to eat well at least 90% of the time. My final conclusion is that our bodies are actually totally amazing at healing once we nurture ourselves. Disease is Dis-Ease. Sickness is our bodies being out of balance and striving to re-balance themselves. When a condition is acute (such as my baseball size boil on my buttock) I nurtured myself completely. Got plenty of sleep, flushed my system with clean water, and gave my body the vitamins, minerals and nutrients it has been craving for years and years.

I would say the turmeric is also essential with this as after I would take it initially, the pain would stop altogether. I wanted to share this story because, like I said, I've tried the turmeric in the past with not much in the way of results, but I was really looking for a quick solution rather than a total revamp to how I treat my body. Once I gave my body what it needs to heal, the turmeric had a friendly playground so to speak to clean up all the junk! The good new is that there really are a bunch of healthy options for food out there now days, especially if you have a whole foods or trader joes near by. Luckily, even grocery stores are coming around with organic throughout. (Oh, that being said, try to eat as much organic and clean food as possible). The initial period of switching your diet will be difficult, but the results are worth it! The longer you eat clean food, the more you like it and the less you want all the junk/processed foods that you used to think tasted good. Good luck to all my brothers and sisters out there who deal with this dis-ease. Love yourself and give your body what it needs!

I am trying to get this message out to as many ppl that have HS as possible - THIS can be the cure for 80% of you!!

Most of us have digestive issues and weakened immune systems, and our bodies are reacting to what we put in our bodies, which are bodies can not handle, and it shows up on our skin in the form of boils.

For me it was dairy, for you it could be dairy, it could be gluten or wheat, or something else!

TAKE THIS MESSAGE VERY SERIOUSLY - THIS CAN CHANGE YOUR LIFE FOREVER!!!

My dermatologist told me to take anti biotics for the rest of my life - I had really bad HS - I just went to see him recently, and showed him I was almost 100% cured... He was shocked!

It is very simple for me, and will be for most of you, my body can not digest or handle certain foods, and that causes HS reactions. You need to figure out what foods!!! Day by day figure out what you ate, and see how it reacts on your body. For me, if I have diary, it will immediately show up on my body (ex- within a few minutes)... it is very obvious what is effecting me..

Allergy test is only step 1... healthy lifestyle is step 2 (yoga, gym, healthy diet)...

DONT LIVE YOUR LIFE IN MISERY WHEN YOU DON'T HAVE TO!!!

I thought I'd share my story in hopes that my experience will help others.

I've been suffering from this horrible condition since I was 18 - I am 36. I went through the vicious cycle of antibiotics (many different kinds) and lancings with little success. My aliens were all in the groin area. At first, this process did help with flare ups. I would go for several months and somtimes over a year without serious flare-ups - the condition was manageable, minimal discomfort and pain that would heal quickly. it stopped being manageable about 8 years ago.

During this period I was partying often (drinking, smoking, etc. ), not sleeping much, eating very poorly (I have never been overweight, a bit underweight... just eating a lot of fast and processed foods) and not exercising much if at all.

Several years back it got really bad (constant pain and discomfort, it was painful getting out of bed). I had sores that constantly drained, never healing. I did some serious googling on remedies and ran into this site among other sites that provided information that I was looking for.

I tried remedies looking for a quick fix still maintaining the lifestyle drinking, smoking, poor sleep, bad food, etc. without any improvement. Acv, turmeric, vitamins, tea tree oil, epsom salt baths, etc were all in the mix. I was pretty down as there was minimal improvement. I did this for a few months.

I then read posts about detoxing with raw organic foods. So I gave it a try. I went 100% raw for about a week and continued at about 90% for a month - I also added probiotics to the regimen and ate some cooked foods, but removed processed foods almost completely. I was also continued the other remedies. I was still smoking but drinking much less with my sleep slightly improving. I don't exactly remember the progress or when everything clicked, but I remember waking up one morning and noticed the pain and the draining coming to a complete stop. Everything flattened out! I continued the strict diet for a few more months with zero flare-ups. I then began adding bad foods back into the diet and increasing the partying forgetting how horrible things were. The aliens did reappear but would go away quickly, nothing like it used to be. Zero medication during this period.

Thinking I was in the clear, I discontinued the strict diet completely. I was eating poorly , but still taking the probitics and other remedies mentioned. At this point I quit smoking but continued to drink. I was good for about a year. flare-ups did occur but they healed quickly with minimal discomfort - more like zits instead of cysts.

About 2 months ago an angry alien came to visit and has not left. It is in a new area and has been very painful. It grew and continued to drain. I've been back on the strict diet (95% raw, daily green juices, no processed foods, etc) for about a week now as I've been rudely reminded of this horrible condition I have and will likely always have. I've also quit smoking and have limited the drinking. I'm also trying to rest as much as possible. The alien has, today, stopped hurting and is flattening out with minimal drainage. From previous experience, I'm confident the sore will heal as long as I continue the lifestyle change.

Your body does a good job of telling you when something is wrong and I believe, from experience, what we ingest plays the biggest role is HS. All the processed foods we ingest, I believe, act like poisons to our system. From my research, medical conditions have increased dramatically since processed foods were introduced. These foods do not have any nutrients and not having the balance by consuming nutrient rich, raw, living foods results in our bodies breaking down. if you really think about it, it makes sense and I suggest all of you to do your own research.

A dramatic change in food required a huge lifestyle change for me and I think it will be for most of you, but it's so worth it. As I've found and as many of you already know, there isn't a cure or a simple fix for HS, but I believe there is a long term solution that will keep me symptom free. This is my experiece for those suffering. I tried most everything and I feel that I've found what works for me and I hope this helps with many of you suffering.

Then a couple of months ago, a new boil popped up along my bikini line. It grew really quickly into a golf sized ball (a couple of days). It was super, super painful which made it hard to walk or sit normally. I started taking warm baths in tea tree oil and epsom salts, twice per day, and I began taking the turmeric capsules again along with upping my daily water intake. This didn't appear to help much if any at this point. And I was super discouraged, tired and weepy at nothing. Hidradentis suppurativa is just awful.

Then I began to look at my diet. I already ate a pretty clean diet - no artificial chemicals, no gluten, lots of fresh veggies and fruits - but I was in so much pain that I decided to take things a step further, believing that food can heal. I started eating Paleo - no grains at all (including white potatoes and corn), no dairy, no sugar, nothing processed. Basically, meat (grass-fed when I can afford it), veggies and fruits along with coconut and olive oils. Within a few days of eating this way, my boil popped and began to ever-so-slowly leak puss mixed with blood. I still soaked in the tub twice per day with tea tree oil and that helped to loosen things up, which I think has been important in the healing process. Then about a week later, the blood and pus changed to a white liquid that came out of the boil when I pressed on it very gently.

Anyhow, it sucks to have to give up pasta, cheese and my beloved chocolate... But it's totally worth it to be pain and boil free! I really believe that hidradentis suppurativa is an autoimmune disease of somesort. I also have pcos and endometriosis along with keloid scarring, which I also believe have an autoimmune connection. My hope is that by eating this way my body will continue to heal itself.

Our next step is to add foods back in to find, hopefully, the trigger food, but we are too scared to do this quickly as these past weeks have been a godsend to the whole family.