Hidradenitis Supporativa, Anybody?

[WestCoastBC]

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. 

[cyclinglady]

@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!  

 

[WestCoastBC]

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!

[Lindao]

On 10/4/2008 at 1:07 PM, GrammaMae said:

This is my first post. I am glad to have found this sight! A little background --I felt absolutely horrible the past few months and went to the doctor thinking I would be diagnosed with hypothyroid. Among my weird symptoms was a very odd lesion-like outbreak on my right thigh. I have had this kind of thing before, but "few and far between". I guess I picked the wrong doctor (or so most people in this small town have confirmed). My blood test revealed a heightened TSH level, but not what she would treat (based on the old scale) inspite of my family history and other symptoms. I started doing my own research and found a skin condition linked to Hypothyroid called Hidradenitis Supporativa (which seemed to perfectly describe what I was going through). I also saw that Hypothyroid was linked to gluten-sensitivity. It was then that I began to put the pieces together...I had spent the previous few monthes on a total health kick (you might say) where I was buying wheat and grinding it myself to make "nutritious" breads, pancakes, etc. Occasionally I was using a dough enhancer that contained vital wheat gluten and soy. I thought I was being "so healthy" but I think I may have been poisoning myself! I went gluten-free three weeks ago and I feel better than I can ever remember feeling! My digestion has improved, my complexion looks clear, my energy is through the roof and my weird skin thing cleared up (mostly)! I am left thinking that hypothyroid, hidradenitis supporativa, cyclical hormone levels and gluten are all related. Can anyone here "confirm" this for me based on their own experience? I wonder which of the autoimmune issues is "driving" my other symptoms? Also, what type of doctor should I go to (if any)?

 

Thanks for reading!

I have had hidradenitis for 40 years.   A dermatologist confirmed my diagnosis.   It is very painful and usually has to do wirh your sweat glands.  There is a foundation you can read up on hs foundation. Low carb diet works best for me along with humira.