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GrammaMae

Hidradenitis Supporativa, Anybody?

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I'm so relieved to find this thread! I'm 37yrs old, female. I stopped eating gluten 8 years ago and it has a profound effect on my health. I had lived with daily digestive issues that I thought were normal because that is all I knew. My digestive symptoms included  extreme gassiness. And the feeling that I associated with "being full" was actually feeling sick and I didn't know that until I stopped eating gluten and that feeling had a very positive change. The other big one for was that I used to wake up feeling like I was starving. Like 5th day of fasting kind of starving. I thought everyone woke up that hungry and didn't know it could be anyother way until I stopped eating gluten. The other 2 foods that give me that morning starving feeling are apple juice and some kinds of potatoes. Anyway I started getting Hidrandenitis Suppurativa (though I just recently learned it's name) when I was going through puberty. Mostly on my thighs and armpits but I have had a few through the years on my under boob, waist and Venus mound. They used to be so bad that they could swell to the size of a gulf ball underneath the skin, and produced crazy amounts of puss. I used to lance them to give myself some relief because they would affect my ability to walk. I still have outbreaks but they are immensely less horrific. There is a clear connection with outbreaks and my menstural cycle. Old outbreaks become inflamed as well as sometimes new ones. I tend to breakout just before I ovulate and they're usually less inflamed by the time I finish my period. I use this "Dream Cream" that seems to help lessen outbreaks, it has cinnamon, lemon oil and other anti-bacterial and anti-inflammatory plant extracts in it and has also helped with the scarring. The unsightliness of the outbreaks is hard to process. Especially on my thighs as I want that to be a very beautiful and healthy place to share intimately. When I originally told my dr as a teenager about the outbreaks he said it was because I was fat and dirty. I knew he was wrong because I take very good care of my body. What an ignorant jerk! Oh! The other big thing that happened when I quit gluten is that my anemia was cured! I would have never expected that and I still don't understand why but my anemia vanished and my energy has had massive increases that have sustained since I quit gluten. I had been anemic since puberty and despite taking an iron supplement I was chronically anemic and felt so heavy especially in my legs. I still get that extreme heaviness in my legs if I drink certain types of alcohol. I have noticed that my body does not like dairy. I don't drink milk but I have never been able to effectively give up cheese. I might be addicted lol. I am also allergic to soy. Less so to organic soy, but I don't understand that either. I asked my current dr to test me for celiac disease but she said to take the test I would have to eat gluten for 2 months!!! I told her it would be horrific for me and that it would probably take a good 6-8 months maybe a year to recover from eating gluten for an extended period of time like that. A single meal with gluten in it will have a on outbreak that can take several months to heal so I haven't taken the test. None of my allergies have been diagnosed by a doctor. My self-diagnosis is from years of experience and monitoring what makes me feel sick and gives me outbreaks. I have done quite a bit of research on my diet and skin but did not learn about hidradenitis suppurative until recently, so I am excited to now have a starting point to address this with my dr and learn more about what I can do with my diet to help my skin and overall health and happiness. 

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@WestCoastBC— 

Welcome!  This thread is pretty old and I am not sure members will reply.  I have heard of HS and I found this video months ago on YouTube about Adam who has HS and is on the Autoimmune Paleo Diet (which is also gluten free).  It helped him identify his triggers and to put HS in remission.  It might be worth watching:

https://m.youtube.com/watch?v=t5uIPc6903I

While I do not have HS,  I do have other autoimmune disorders that might benefit from the AIP diet which I have been researching for months.  

Good luck to you.   If you need help avoiding gluten exposures (cross contamination is a serious issue), ask away!  

 

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2 hours ago, cyclinglady said:

@WestCoastBC— 

Welcome!  This thread is pretty old and I am not sure members will reply.  I have heard of HS and I found this video months ago on YouTube about Adam who has HS and is on the Autoimmune Paleo Diet (which is also gluten free).  It helped him identify his triggers and to put HS in remission.  It might be worth watching:

https://m.youtube.com/watch?v=t5uIPc6903I

While I do not have HS,  I do have other autoimmune disorders that might benefit from the AIP diet which I have been researching for months.  

Good luck to you.   If you need help avoiding gluten exposures (cross contamination is a serious issue), ask away!  

 

Thanks for the link!

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