i live with a skin disease called hidradenitis suppurativa, i’ve had it since 3rd grade – going through biopsies, so many dermatologist visits – and years of physical pain. not to mention years in texas avoiding sleeveless shirts, in fear i might raise an arm and draw attention.
it goes in and out of a ‘remission’ state- but it will always be with me, be a part of me, and live to annoy me. i’ve tried numerous precriptions, lancing, heated presses, cold presses, screaming, crying – but they stay or come back unrelentingly.
having dealt with this for 18 years – i’m annoyed and still not used to it. so i’m going to continue ‘experimenting’ with different methods of living. this is why i’m chosing the ‘gluten-free’ route- it’s not cuz it’s trendy or because i want to lose weight ( i do- i really do, but that’s not the point).
the wheat/barley free beer i tried this weekend was – ok. tasted like beer, was bottled like beer, but lacked the alcohol content and the real satisfaction from a tasty lager. Redbridge is the name, if you’re curious.
so i decided this a few weeks ago, and have been playing with the idea- i got rid of processed carbs- in an effort to get this started – because most processed carby things have WHEAT in them.
then friday came and i folded- drinking a few pints, eating some wheat roast bbq - and woke up feeling like a wheat harvesting tractor had run me over. which makes me believe i may actually have ‘gluten sensitivity’
for now i’m still eating meat and dairy – which might change eventually to limit dairy – although truthfully my daily dairy intake is one container of yogurt. but that might be all it takes.
so this is a real good bye – good bye beer!!!- good bye most delicious hamburger buns from my favorite hamburger joints- and many other things i won’t cry about – because their are alternatives – and they are just as tasty.
Posted by B on August 10, 2009 at 6:28 pm
goodbye beer, but congrats on the size 14 jeans.
i’m still reading. are you?
Posted by sknupple@gmail.com on August 10, 2009 at 6:29 pm
Yes still reading! & thanks!
Posted by Shannon on August 28, 2009 at 4:08 pm
Hi there, have had HS for 16 years, mostly manageable but still very demoralizing, and have recently been working on a gluten-free diet with a doctor. My blood / saliva tests came back showing gluten sensitivity. If you want to get the test, you need to have some gluten in your system bc the test measures antibodies to the gluten. But if you felt like crap after reintroducing gluten, then you’re likely gluten sensitive (an auto-immune disease, and HS has been linked to auto-immune and inflammatory conditions). Unfortunately many ppl who are G-S are also lactose intolerant. I haven’t tried adding dairy back in yet, so can’t speak from personal experience.
Good luck!! I have also found great benefit from essential fatty acids (flax seed or fish oil supplements). I take them 2x a day and it has really helped!
Cheers,
Shannon
PS – Yes, gluten free IS a pain in the ass, but as we know, not as big a pain in the ass as HS!!!
Posted by staceykface on September 21, 2009 at 12:12 pm
Thanks Shannon, I just realized i hadn’t responded to your comment! I’m doing my best to sloooowly removed all dairy from my diet. one day at a time, one meal at a time. it’s not as hard as you’d think it would be! but there’s still chocolate and enchiladas standing in my way!
Posted by Jeanne on October 1, 2009 at 12:56 pm
Hi Stacey, yes you definitely have a problem with gluten. It is okay, we all have an adjustment period. It is not easy to be GF but it is very do-able. This little discretion that you had will be a good lesson that the stuff is killing you slowly, or in this case maybe not so slowly. :)
You will probably be sick for a week or two from the beer & the burger. I sent you a PM from the gluten free and beyond forum.
Shannon would you email me gfpaperdoll at yahoo dot com. I am collecting information on people that have HS & have tried the GF diet.
Posted by Trish on October 9, 2009 at 12:30 am
I have had HS for 17 years. Within the last year, I have been having seizures, so I went to a neurologist and he diagnosed me with epilepsy. So, I thought that was odd since I was 25 and typically epilepsy develops earlier on in life. I did research on seizures and Celiac came up. Then I researched Celiac and HS and so I decided to try GF and had amazing results. No more seizures and my HS has cleared up somewhat, well atleast compared to how bad it was before. I am amazed with the information I have found compared to what doctors have said. I am still getting tests done to rule out the epilepsy.
It really helps seeing others posts, and it is really putting thigs I into perspective as to why I am so ill.
Thanks!