I was recently contacted by Manoela, a young woman whose story is reminiscent of mine. Like Manoela, I had some success with a different type of diet in 1998, which made the puzzle pieces fall together quickly when I was introduced to the Paleo diet in 2009. Without success from a low carb diet, I would have been quite sceptical that insulin resistance was playing a major part in my disease process and may not have taken to the Paleo lifestyle with the intensity that I did. Manoela used a standard Paleo diet and yeast elimination to manage her HS. However, she was missing the final puzzle piece until she read The Hidden Plague: a field guide for surviving and overcoming Hidradenitis suppurativa. I’m excited to have her journey into the autoimmune Paleo protocol (AIP) documented on PrimalGirl.com and thrilled to report that Manoela has joined our team in order to help others. You can read more and get in touch with her on the PrimalGirl Team page.
I can still recall the sound of my classmates laughing at me while I wrote on the chalkboard in class. I was 10 years old and had my first boil on my bum. The blood went through my pants and my classmates could see it as I wrote on the board. I was humiliated.
From that day on I always had boils.
My teenage years were harder. I had Pilonidal Cysts four times, which resulted in four major surgeries at the ages of 16 and 17. Only those who had these cysts know how awful it is; recovery is slow and painful without surgery. Recovering from surgery is even worse. Honestly, that was the toughest thing I have ever endured. But like a lot of us, I hid it well. Looking at this picture of my mother and I on my 17th birthday, you would never know the pain I felt, both physically and emotionally.
When I left Brazil in 2003 to live in Boston with my mom, I was still not diagnosed with HS and extremely fearful to have the cysts again. So I went to the doctor and she was the first person to say: “Oh! Manoela, you have Hidradenitis Suppurativa.” Phew! It has a name! That was a relief.
Knowing the name of this awful thing was such a relief because there’s nothing worse than not knowing what you have. But I soon realized that neither my doctor nor the entire medical community had any clue how to treat, care for and instruct patients on what to do.
The doctor referred me to a Dermatologist. I was put on Minocycline, Doxycycline, Spironolactone and strongly offered to consider surgery and Accutane (isotretinoin). I refused the surgery and the Isotretinoin. But I took the meds for a good 6 months. Deep down in my gut, I knew it was being caused by something on the inside. I don’t like drugs for obvious reasons–my early teenage years made me super resistant to a vast majority of antibiotics out there and I had never really seen any improvement while on the drugs.
During some exploring with my doctor, I was tested for common allergies and tested positive for yeast in 2007. I eliminated all yeast intake (wine, cheese, plums, grapes…) and went Paleo for 2 years. Boy, I have never felt so good in my life!
However, by late 2009 I had 9 boils at the same time and they were stronger than ever; I was so frustrated and disappointed that I was eating right and still having them. So I said: Screw this! And I fell off the wagon because I am human being and that’s okay. I pay the price with my HS anyways.
I am now in my 8th day of the AIP Elimination Phase, thanks to Tara who wrote The Hidden Plague. The book has helped me understand and see my HS in a more scientific way. I know it’s not going to be easy but based on my previous experience with the Paleo diet and eliminating yeast, I have no doubt it will work. Knowledge is power and in my case eliminating nightshades (which I LOVE dearly) will hopefully put my HS in remission.
My hopes are that the more awareness we raise the higher the chances are that in the future the medical community across the globe will understand how crucial proper nutrition is to our health.
Follow your gut!
“Let food be thy medicine, and medicine be thy food.” -Hippocrates