Hidradenitis Suppurativa: You Can Have your Life Back!

Hi Catherine. I have had HS for several years. I realised it was connected to my diet when I went on a micro diet you the ones that you have milk shakes or soups instead of meals. When I went in the diet my HS disappeared only to come back when I started to eat regular meals again. I then researched the condition on the Internet and came across information about nightshade foods. I cut them out and I am currently HS free. I can't believe my luck because I had been told there was no cure for the condition. Please if you have HS just try eliminating nightshade foods to see if it helps you. It's certainly worth trying it. Good luck. 

I just hope it does not come back. Barbara x

I read your post and questioned this with my doctor/dermatologist before she confirmed that i ve got HS . until this visit no other dermatologist(and i ve been to 3 different ones) said HS only foliculitis ,ingrown etc. Bottom line she decided to put me on accutance version and i refused. i had enough of that and acontraceptives for acne in general. 

in the meantime i ve found th here mentioned experiment done by Italian doctors - it s true that the sample is of only 12 people but this is a published experiment and the conclusion was that they had an intolerance to brewer's yeast -technically i dont know how the bread from the supermarket is done but i m personally starting to question if it is not yeast in general . i ve decided to give up on milk (which anyway i was using in my coffee only) and especially on bread . i ve realised it wasnt until 1 year or so ago that i started eating bread on a daily basis in  the morning - my lovely bruschetta . i ve stopped eating bread for over 1-2 months now (although i love bruschetta and toast sandwiches )and i stopped having flares and even more so one in the armpit started disappearing . I d be tempted to contact these doctors since they are on to something. whenever i discuss food intolerance with doctors it s been dismissed immediately hence cannot get any blood tests done . this is definetely something that affects patients. they know it s not curable but they dont see to explore other theories . well i wouldnt blade them as much - i guess they are not given the liberty , as doctors , to do otherwise - it s just another industry. 

either way here s the experiment i was talking about. the 12 patients have been observed for 12months and HS didnt return. hope this helps. 

the published results are here - of course the industry will debate that 12 patients arent enough but they did get cured - so when a doctor tells me it s not curable but that it certainly doesnt have anything to do with diet i beg you to question them over and over again. doctors should help us try to get better. but obviously they do not know better . 

this is on the US National Library of Medicine/National Institutes of Health website so it must count for something. not everything gets published there me hopes?

http://www.ncbi.nlm.nih.gov/pubmed/23891479

Hi Catherine, and thank you so much for sharing your story, I too stumbled upon this page after doing some reseach on a recent outbreak on my buttoks. 

I am 56 years old and had my first bout with HS when I was 14. NOBODY, including doctors, derms, gynos could ever tell me what the problem was and I suffered in embarressing silence for decades.My entire groin area is a mess, and I could never be at ease sexually because of the unsightly pitted and darkend skin in this area, If I had even known there was a term for it, I would not have felt so alone.I've not had any surgeries,I've not tried medication(nor would I at this point,) but I am so interested in cutting out the nightshade vegetables and fruits. Being italian, i overdose on tomates and always have,so I will be a great case study.

I will be checking back with my results in a few weeks.

Thank you again- you have no idea

Hi Catherine,

Thank you for your post. I believe that you summed up my life and struggles in a few paragraphs. I wanted to add to your post to inform anyone reading this that they need to read and re-read alllll ingredients. Almost all cheeses made in the US contain potato starch in them and it's usually labled under Enzymes. Baby bell to Laughing cow. It's everywhere. Another place that I found by mistake was toast/bread that has a shelf life over one day.

I seem to much more sensitive because allot of my sensitivities also come from pepper which again is in everything, but a major food group for me recently has been fruits.

If anyone is considering doing this. It does not happen over night. I am going on one year and when I slip up they come right back. For the first time in over 27 years I went over 7 months without a flare and then I decided to venture back into the world of food and it came back. Another big thing is water / water/ water and when you think you have had enough water drink some more. I now drink about a gallon of water a day.

Don't despair. Keep moving forward. I do believe that there is a light at the end of the tunnel.

This disease has isolated me emotionally, mentally, physically but I believe that if we all try to put our heads together we can find some relief.

Remember that relief means walking again, enjoying family time, laughing, being intimate, working, being social and just getting your life back.

Hi Catherine, have you been able to reduce scars post HS?

Hello, Catherine.  I know your post is over a year old, but could you please come back and communicate again with us who are still suffering?  I am curious if you are still in remission from HS?  Also, in addition to avoiding nightshades, did you avoid anything else?  Such as sugar and sweets?  It has been suggested to me that I avoid all grains and sugar, and this is proving very difficult for me.

It may be unrelated but oddly enough the only time I had a total remission was when I was prescribed a heavy dose of flavonoids (in Italy the product is called Arvenum 500mg 3 caps twice a day for 5 days although I may continue at a lower dose!) for a seemingly unrelated issue, hemorroids that wouldn't go away. The blood sacs I had dried up!! and they wouldn't go away with anything else! (the ingredients are Diosmina/diosmine? 450mg flavonoids expressed in esperidine 50 mg)

Are you still in remission from this Catherine?

Hey everyone Im Sid and i do believe this is what we needed... Thanks Caterine453 Along with your plan i have started Niacin and after bathing i use 99.9% Aleo Vera Gel that help with Healing Pain and Scarring ... No breakouts

That was a real I mean real kind of informative information you have shared with us ! I just had four surgeries , in my right and left side of groins and on my both sides of armpits and I am in the recovery mode lying on the bed all time and hoping it will not come back . But still I have them in buttocks and was planning to have them removed surgically once my armpit and groin ones are healed up , but you gave me a ray of hope , may be I won't be needing another surgery , I would definitely check food allergy and see if it works for me the way it worked for you ! Let's just hope !

Well, this is unfortunate.. but I'm glad to know now. 

I came across the main post to this thread during the first week of January 2016.  Thank you, Catherine. I had just undergone surgery to excise a particularly bad abscess.. my surgeon didn't get the whole area so I actually have the second surgery scheduled in a couple of weeks... however.  During my recovery time, I did a bunch of research and did my own elimination diet.

Brown rice and chicken.  Removed most processed foods. I did it very strict for the first four weeks.  My taste buds were dying.  Had the annual GP visit in February and he counseled me on my weight loss.  I simply said I'm eating the best I've ever eaten, can't help if I'm losing weight without trying.  Nice side effect though I'm not overweight by any means.

I introduced gluten and dairy back after four weeks.  Funny, I think gluten gives me headaches.  And I'm certainly lactose intolerant.  It's nice to know those details regardless. But I can't give up cheese.  I just won't.

During this time, my wound was healing and the other portion of the abscess still there was perfectly flat.. a bit of discharge, mostly from the wound (which was about 3 1/2" deep at first.. still hasn't fully healed almost three months later.. however I think that's due to a sinus tract feeding into that wound.. not letting it heal, as it's a sure way for the thing to drain.. but I'm not a doctor). But the jist: flat, almost painless.

Last Wednesday I caved and had tater tots with dinner.   I decided now or never.  No issue.  So I exclaim to my boyfriend (who is generally following the diet due to me doing most of our cooking) that our suspicions were true and while the elimination diet was nice for a minute, it was kind of unnecessary.  So we ordered a giant pizza with hot peppers on Friday.  It is consumed over the course of 48 hours.. don't judge me, I haven't had pizza in three months.. you'd have pizza for breakfast too.

Nothing immediate.  But I woke up this morning with the portion that still needs surgery swollen, tender, and, for the first time since pre-surgery in January, full of taupish, bloody pus.  I haven't had to drain anything since right before the surgery.  The only drainage I had was clear, unless it was related to the deep wound's healing process. 

Note that I did this diet for so long to try and weed out a lot of variables.  I know a lot of people said something about it being hormonal and I had gone back on birth control in January.  I went through two monthly cycles with no real issue.  Maybe a tiny bit of swelling during that time of the month. I also introduced turmeric, taking it daily since about mid-Jan.

The only really change over he las two months is introducing the nightshades back in. I've had great luck for the last eleven weeks. Three days of eating nightshades and I've got the issue again.

While it's annoying to have an allergy to such ubiquitous foods, it's really nice to know.  I'm going to do another elimination diet and essentially try the process again in a little while.  Hopefully surgery will take care of the rest of this current mess - but I do understand that this is a life-long issue I need to monitor diligently for a long time.. it's not just this spot, I have other parts that WANT to get this way.. but haven't gotten bad yet. Now that I have some control over it, hopefully I can keep it from getting out of hand again.

but.. Catherine, I can't thank you enough.  Even my doctor wasn't aware of this.  I have told him about the diet and will report my findings to him next time I see him.  Thank you for giving me some control over this horrible dis-ease.  It is so pricless.