Author Topic: Introducing myself  (Read 23580 times)

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Offline gfpaperdoll

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Re: Introducing myself
« Reply #20 on: Tuesday September 15, 2009, 02:00:56 AM »
The goal is to give up as many things as you can in the beginning - you are looking for the foods that make you feel your best & will give you some energy. (well & begin healing)  Those are different for all of us.  If you are sleepy after eating a meal chances are that you ate something that disagrees with you.  knowing that you will not have to eat that way forever...

I am not up to speed on DH but I will do some reading...  Your illness is so similar that I think you should do the same things they do - PLUS more...  I know one thing is that they do not consume iodine - they use sea salt.

So to start, after gluten free (wheat, rye, barley, & oats) you might strive for grain free, soy free, dairy free, artificial sweetner free, & additive free.
If you think you can handle rice, go a week with no rice & then eat at one meal & note how you feel that evening & the next day.  (really some of us cannot do rice) & only eat the white rice, despite the prevailing thought you do not get more nutrition from brown rice (although I think it tastes better) & it is harder to digest.
I eat my spaghetti sauce over sauteed cabbage - delicious!!
try to limit your white potaotes & eat more sweet potatoes.

okay more congrats all around & we can figure this out, I have some more suggestions - I will PM you later...  email or PM me anytime you need anything.

Offline gfpaperdoll

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Re: Introducing myself
« Reply #21 on: Tuesday September 15, 2009, 02:08:19 AM »
Try to figure out what your core safe foods are.  something that you eat that makes you feel good.

Mine used to be boiled chicken with carrots & cabbage which was like a brothy soup.  cabbage & carrot salad & baked salmon, pineapple, apples & applesauce.  I also ate more rice then - I would stir fry an onion & garlic & add rice & a can of tuna & eat with carrots with a cinnamon & honey glaze.

Again lots of congratulations!!  this is a big step, but like my friend after 3 years it is no big deal.
oh & try not to eat those Australian Kind Bars they all have soy in them. :(

Anyone else????? 8) :) 8) :)

Offline LIGA girl

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Re: Introducing myself
« Reply #22 on: Tuesday September 15, 2009, 03:17:02 AM »
Hi again Jeanne

thanks for all your suggestions. I would appreciate the choc cake recipe, mine was based on almond meal.

I am in the process of adapting my diet so I dont introduce too many new things at the moment. Yesterday i have to say I fell off the wagon later in the day, not good for the first day I know, but when I ate some pastry  found that it irritated the inside of my mouth where I do get lesions, which I found happened last time I started to introduce gluten back into my diet, then that effect subsided in time. Today I am back on track again.

The link to my journal is http://www.skincell.org/community/index.php/topic,21090.340.html

It is a very long journal, but at the start of it I was on the GF diet and starting to introduce some gluten. The first couple of pages give an overview, at that stage I had been on the diet for about 4 months. I no longer drink alcohol at all and hadnt at the start of the diet too. The reason I started to do gluten and alcohol again was that I wanted to live a 'normal' life and not feel like a patient all the time. I have now adapted to the restrictions in my life a lot more.

I think it would be good if this discussion was moved to another part of the forum, either general health or helpful remedies in the natural remedies section. The moderators will see this and do it if they agree.


Anyone else????? 8) :) 8) :)
 

There have been some on here who have tried diet but I dont think they are around anymore. The link to your other forum would be great!

What are the Kind bars, I have never heard of them ....

Cheers
Vicki


Offline gfpaperdoll

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Lady with HS started GF diet & a blog!
« Reply #23 on: Thursday September 17, 2009, 01:56:24 AM »
Here is a link to a lady in Austin, Texas that has HS.  She has just started on a gluten free diet & started a blog.  Of course I mentioned to her that she also needed to go dairy free - at least at first...

http://successfullyfailing.com/2009/09/16/got-guts/#comment-34

You can post comments to her blog...
Hope everyone had a good day.
Jeanne

Offline gfpaperdoll

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Comments from Ron Hoggan, co-author of Dangerous Grains
« Reply #24 on: Friday September 18, 2009, 03:04:12 AM »
I received an email today from Ron Hoggan. Most of us know him as the co-author of "Dangerous Grains". He is also on the board for Hidradenitis Suppurativa. He gave me permission to post the following:

"I have long suspected that HS is another manifestation of gluten-induced skin lesion. At the very least, I suspect that gluten is a large contributor to HS. I also find its connection with iron metabolism most interesting. This is partly because gluten sensitivity and celiac disease are both associated with iron metabolism errors.

Your post prompted me to do a quick search of “hidradenitis suppurativa” and “gluten”. I got some interesting hits as you can see below:

http://www.lastapple.com/jason/hs/treatment.html Jason Cameron 2 weeks on the diet as of Sept 10/09 – feeling better

http://www.celiac.com/gluten-free/index.php?showtopic=51523&mode=threaded&pid=484496

apoppy and grammamae both indicate that their HS has gone into remission on a gluten free diet.

http://successfullyfailing.com/2009/08/10/hidradenitis-suppurativa/ discussed HS and GF

http://brain.hastypastry.net/forums/showthread.php?t=13543&page=4 another discussion of GF and HS

There is a consistent pattern of “improvement” with one person claiming complete remission. That person is also the one who appears to have been on the diet longest. I don’t know much about HS as my areas of research are gluten and iron. However, I suspect that a gluten-free diet might do a lot of good for HS sufferers and, at the very least, it is most unlikely to do any harm as it is a very healthy diet.

Best Wishes,

Ron Hoggan, B.A., B.Ed., M.A., Ed. D.

Co-author Cereal Killers to be released in the fall of 2009

co-author Dangerous Grains ISBN: 978158333-129-3 www.dangerousgrains.com

author: The Iron Edge: a complete guide for meeting your iron needs ISBN: 978-0-9736284-4-9 http://tiny.cc/ironedge

author Smarten Up! ISBN: 978-0-9736284-3-2 www.smartenup.info

editor: Journal of Gluten Sensitivity www.celiac.com

Offline bluerthnu

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Re: Introducing myself
« Reply #25 on: Saturday September 19, 2009, 06:42:09 PM »
Hi Jeanne,

I finally got around to re-posting this from the other forum.  Thanks again for all your help.  And hi Vicki!

-Kris

_______________________________________________________________________________________

Hi GFPaperdoll & others. My name is Kris and I have just found out about HS this week, even though I appear to have had it for about 15 years. Been doing a LOT of research online and the gluten connection keeps coming up. GFPaperdoll, I've seen your posts in some other forums and have seen how people have shot them down, too. I understand that.. like you said, the people with HS are in pain and have suffered a long time. But in all my research, it just keeps coming up...

So here I am tonight, scrolling through this forum and I see a post by halsgluten mentioning keratosis pilaris (KP) and it's relationship to celiac. "DING!", light goes on.... I HAVE KERATOSIS PILARIS, TOO! And on top of that, I am a type 1 diabetic who has noticed over the years that more and more of my diabetic friends are being diagnosed with celiac disease. (I have never had any GI symptoms to make me think I have celiac.)

I also read that it's possible that people with gluten allergies would have trouble losing weight. Even when following a sensible diet and exercise program, I have had this problem. Doctors and dieticians have simply told me "it's harder when you're diabetic" but couldn't explain WHY.

So suffice it to say that I see no reason NOT to try a gluten-free diet. Getting rid of a lot of the starchy carbs from wheat and eating more fruits and veggies certainly couldn't hurt my diabetes or waistline. And while the KP never really bothered me, the HS certainly does! If going gluten-free has any positive effect on the skin issues, it'll be worth it!!!!

Do any of you have suggestions for getting started? I've found some good websites but a few of my issues are that I am low-income and don't really cook. (I can follow directions, just nothing fancy, lol.) Any advice would be great!

Offline LIGA girl

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Re: Introducing myself
« Reply #26 on: Monday September 21, 2009, 09:39:53 PM »
Hi Kris

 Welcome here! Good to see you. I am trying the GF diet too and my progress is in the journals section of this forum. I have read it takes 8 months to see an inprovement so I am in for a wait but it will be worth it if it works.

Regards
Vicki

Offline gfpaperdoll

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Muffin Recipe?
« Reply #27 on: Wednesday September 23, 2009, 02:28:26 AM »
Hi Kris, glad you made it over here.  Kris is now GF I think this is day 4 !!  She is going to school... I have been bombarding her with daily emails & attachments!  Which gives Vicki a little break.  ;)

Vicki, I am happy to see you enjoying that muffin recipe!!! :)  Should we post the recipe for others?  Is there a place for recipes, or can we post it here?  My dil also made it & she is hooked.

It is really great for people that are not feeling up to baking.  & great for us women to know that we are only 5 minutes away from chocolatey goodness.  & wow, you made an apple one!  I bet that was good.  & great for people that cannot tolerate chocolate.

Vicki you are doing so great on your GF diet I am really delighted for you.  & wow that one little lick of gluten really gave you some pop out spots.  Hope that is over soon.

I am also trying to keep up with Stacey & her gluten free blog & hope I get a chance to meet her soon in Austin, TX.  I will be getting a Terra Burger in Austin, that Stacey mentioned on her blog.  They have GF hamburger buns that Stacey said tastes like a sorta sourdough!!!  OMG, sorry Vicki, erase this from your mind.  :laugh:  All the while emailing a lady that has HS & a number of other skin issues & autoimmune issues, she is 25 years old...


I hope everyone is having a good day
jeanne
« Last Edit: Friday September 25, 2009, 01:56:25 AM by gfpaperdoll »

Offline gfpaperdoll

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Dangerous 5 Minute Chocolate Mug Cake
« Reply #28 on: Saturday September 26, 2009, 01:39:53 AM »
okay hope this is okay to post here.  If you want a treat but are not up to baking - try this!!!
& if you wash the cup afterwards, no one will ever know!  :P :laugh:  :laugh:

5 MINUTE CHOCOLATE MUG CAKE  (Large Mug)
4 tablespoons gluten free flour of your choice (or almond flour or coconut flour)
4 tablespoons sugar
2 tablespoons cocoa
1 egg
3 tablespoons milk (or coconut milk)
3 tablespoons oil
3 tablespoons chocolate chips (optional)
A small splash of vanilla extract
1 large coffee mug (MicroSafe)

Add dry ingredients to mug, and mix well.  Add the egg and mix thoroughly

Pour in the milk and oil and mix well..

Add the chocolate chips (if using) and vanilla extract, and mix again.
Put your mug in the microwave and cook for 3 minutes at 1000 watts or high.

The cake will rise over the top of the mug, but don't be alarmed!

Allow to cool a little, and tip out onto a plate if desired.
EAT ! (this can serve 2 if you want to feel slightly more virtuous).
And why is this the most dangerous cake recipe in the world?
Because now we are all only 5 minutes away from chocolate cake at any time
of the day or night!
From Charlie in South Carolina, who got it off the internet & posted it to the celiac list serv


Liga Girl, Vicki, has also made an apple one!
Enjoy!!!

Offline gfpaperdoll

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Gluten Free Day 6 for Bluerthnu
« Reply #29 on: Saturday September 26, 2009, 01:47:28 AM »
I heard from Kris today, I think this is day 6 gluten free for her & she has not cheated!  She has a friend that is supporting her in gluten freedomness & eating the same things that Kris eats, when they are together.  Now that is a real friend!  Kris said her blood sugar had been amazingly good...  That is all I know so far.  I might hear more this weekend or Monday, which I think is a light day of school etc for her.

I am mailing her a little gluten free treat tomorrow to celebrate her 1 week gluten freedom!!

(Kris has diabetes, KP & HS, I hope to hear soon that the KP is gone, the HS is healing & the diabetes is a breeze...)
Hi Kris, if you check in, let us know how you are feeling & how the new way of eating is going.

Offline Bamawing

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Re: Introducing myself
« Reply #30 on: Saturday September 26, 2009, 08:21:58 AM »
Oh my cow. I am SO totally trying that cake. I wonder if it'll work with the German flour I have... (I'm an American expat living in Germany... they have more flour options than cold cereal options. It's wild. [Well, that and I miss Golden Grahms.])
I'm more confused than a mood ring on a paranoid bipolar schizophrenic chameleon in a bag of skittles!

Offline gfpaperdoll

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Failproof Cake!
« Reply #31 on: Saturday September 26, 2009, 05:23:52 PM »
Hi Bamawing, that cake should work perfectly with your flour.  This cake would probably be fine using any flour from corn meal to cornstarch.  Julia Child is known to have used cornstarch as a substitute for cake flour.   For anyone that is baking gluten free use whatever you have or 2 Tablespoons of sorghum flour, 1 Tablespoon of Potato flour, & 1 Tablespoon of Tapioca flour.

Enjoy your cake!!!  Let us know how you like it!
jeanne

Offline gfpaperdoll

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Doctor said Celiac can cause HS
« Reply #32 on: Sunday September 27, 2009, 04:46:18 AM »
I found this post on another forum, I think it is one of the ladies that posted recently on celiac.com
I wanted to post here because of what she said her doctor told her...

"Re: Hidradenitis suppurativa From shuswapian [Log on to view profile] on 2009-09-12
Hello everybody I am new to this forum but not new to this disease. I finally diagnosed myself with HS 4 years ago and I have had it for what I can remember my whole life. Doctor after Doctor perscription after perscription.I have had tummy issues my whole life being diagnosed with IBS and told to eat lots of fiber.For six weeks I have been in and out of the hospital all tests negative. My sister has Celiac and said it sounds like I have some of the symtems so I looked it up I had some but they vary from person to person. Then there were people who had crusty chicken pox like sores on there shoulders different from mine but still sores. So I typed celiac/hs into google and BOOM!!! People with HS should NEVER eat gluten. My Doctor told me after I told him what I thought my pains were caused from that hs cant cause celiac but celiac can cause hs I all most fainted it was like a spiritual awakening for me I cried and laughed hysterically.PLEASE all who suffer from this horrible disease either get checked for celiac or just quit eating all gluten beware it is in allot of things but there is allot of great things out there as well.I just had to share this with all of you. I allways felt something was poisioning me and there was my food.I have been gluten free for only 3 days and i feel beter and the boil under my arm is shrinking.OMG can it really be something this simple and the Doctors cant figure it out.All our suffering I am so glad I never let them cut out my glands or remove my belly button like they suggested!!! "
« Last Edit: Sunday September 27, 2009, 05:28:43 AM by gfpaperdoll »

Offline gfpaperdoll

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August 17, 2009 Article British Journal of Dermatology
« Reply #33 on: Sunday September 27, 2009, 05:26:54 AM »
Found this interesting study on HS and the connection to Crohn's, Inflammatory Bowel Disease (IBS), and Ulcerative Colitis (UC).  I will say that I have studied Gluten Intolerance/Celiac almost every single day for 5 years and I know that Crohn's, IBS, & UC are all problems caused by Gluten Intolerance/Celiac.

Here is the link to the article.
http://www3.interscience.wiley.com/journal/122546842/abstract?CRETRY=1&SRETRY=0

Here are some highlight quotes.  Note below that CD is referring to Crohn's Disease.
British Journal of Dermatology 8-17-09
“Van Der Zee HH et al. – This pilot study shows for the first time that HS occurs in patients with CD or UC. More prospective studies are warranted to establish the association between HS and IBD and its underlying pathogenesis.” …

“Results Of the 158 patients interviewed, 102 (65%) had CD and 56 (35%) had UC. Twenty-five people (16%) responded that they had had or still experienced painful boils in the axillae and/or groin, of whom 17 were patients with CD (17%) and eight had UC (14%).
Conclusions This pilot study shows for the first time that HS occurs in patients with CD or UC. More prospective studies are warranted to establish the association between HS and IBD and its underlying pathogenesis.”

« Last Edit: Sunday September 27, 2009, 05:32:15 AM by gfpaperdoll »

Offline gfpaperdoll

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A few odds & ends
« Reply #34 on: Sunday October 04, 2009, 03:01:26 AM »
I just wanted to mention for people that are on any medications to be aware that if they have an underlying problem with gluten that the absorption of their medication could be nil or spotty.

Of course most people do not think that they have a problem with gluten, when in fact most people do.  It can be dangerous, for instance if you are on pain meds & large doses of those are barely giving you relief and you go to the hospital or new doctor and tell them all the meds that you are on & they give you a pain med in shot form, it could overdose you.  Because really all that pain med that you have been taking by mouth, you were possibly not absorbing it all... 

Also, when a person omits the gluten from their diet they could be very sick from the withdrawal of the gluten and for a time be in worse shape than when they started.  It can take anywhere from 3 weeks to 3 months to completely get over the withdrawal. 

If that is not bad enough once you are off the gluten then other food intolerances may appear.  & really it is only a lucky few who do not have to give up additional foods.  Whatever your food intolerances are you probably have always had them, it is just that the gluten is so insidious that it masks the reactions of the other food intolerances.  Well that is explaining it in a very rudimentary way... 

Offline gfpaperdoll

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research - google "... and celiac"
« Reply #35 on: Sunday October 04, 2009, 03:58:37 AM »
If anyone wants to do a little research you can take a diagnosis that you have and google it with "and celiac" you will probably get a few posts of other people that have had this condition and it cleared up when they went on a gluten free diet.  I just did this with a diagnosis that I read on here & got a lot of results, one from a very well respected person that spends a lot of time posting on celiac.com helping all the new people.  I do not know how she keeps at it so long.  After about 4 years I just could not keep answering the same questions over & over.  It is more fun & challenging to post here & other places trying to get the word out about HS & gluten intolerance/celiac.  & OMG I think the word is starting to get out!!  :)  It is not an easy choice to go gluten free, but it is good to know that it is helping other people that have the same issues that you have.

You can sign up for the forum that they post to & PM them & I am sure that they will be happy to offer any information that you need.

okay, I am going to go & PM the lady that I just posted her story on here about HS & see if I can get a reply. 

I hope everyone is having a great weekend.  I have been cooking & cleaning house, the grandkids are coming over...
jeanne

Offline gfpaperdoll

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Gluten Free and HS going away! YES
« Reply #36 on: Monday October 12, 2009, 05:09:08 PM »
Here is some posts by Bjean who has just started on the GF diet Sept 17, 2009 & is seeing success with her HS!!! YES, I am soooo happy for her.

http://www.hs-usa.org/forum/display_...1&ThreadPage=1

I hope you read the thread !

Offline biddy

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Re: Introducing myself
« Reply #37 on: Monday November 02, 2009, 12:57:28 AM »
just read your thread on coeliac disease and possible links to HS and other derm. conditions.I am a HS sufferer but ironically I was a strict Coeliac until the age of 19 when I left home,never touched gluten apart from my gluten challenges which i failed miserably,and yes you are right Coeliac is an irish disease attributed to the potato blight in the 1800's,no other family members tested positive when I was diagnosed but ironically my sister has just tested pos. 2 years ago and now I at 41 am not on a gluten free diet and developed HS over 5 years ago.I will admit that due to my childhood diet I do not generally eat gluten as I actually don't like it with the exception of sweet stuff!!!and as the mother of 4 children and my history none of my children were introduced to gluten/flour until they were 14 months old and all are well TG.I have had 3 recent negative results on the Coeliac tests but I do tend to avoid gluten by preference,taste and choice rather than on medical grounds and the diet is not too bad but that is just my opinion
Biddy

Offline gfpaperdoll

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Gluten free Diet & HS
« Reply #38 on: Monday November 02, 2009, 03:05:19 AM »
Hi Biddy, your tests for celiac are not going to be postitive because you are not eating enough gluten to get a positive result.  You are however probably eating enough to keep your HS active.   You might also have a problem with soy & dairy.  Once diagnosed, the diet is for life.  Are you gluten free again?  Can I encourage you in that direction if you are not? :)   Although, you were diagnosed young & on the diet & probably got much better in your teens.  You had years to heal & become healthy before you started eating gluten again and overloading your immune system.  IMO that is why you got the HS, you just wore your immune system down.  

How is your HS doing?  Have you noticed a connection to gluten, dairy, or soy?  

There are a lot of people that are suffering horribly with this disease.  They do not see the connection to gluten & HS.  You could really help them with that.  I hope that you will be strictly gluten free & even soy & dairy free if you have to & report back how your HS is doing.  This will also keep you from picking up other autoimmune illnesses.

Thank you for sharing your story with us.  I hope to hear from you again.  Please let me know if there is anything I can help you with.
« Last Edit: Monday November 02, 2009, 03:06:57 AM by gfpaperdoll »

Offline gfpaperdoll

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Gluten Free Update
« Reply #39 on: Sunday December 13, 2009, 11:30:21 PM »
The people that I know that have gone on the Gluten Free diet are still on the diet & their HS is still in remission.  I am working on a project locally.  I have my posts here on the internet that seem to be taking care of themselves, so I have started working in different avenues.  I hope to have another case of remission to report soon...

Here is a better link for information on the MSG that is being put in our food despite a "clean label".

http://www.msgtruth.org/avoid.htm

Be sure to scroll down to the pictures at the bottom of the article.
jeanne
Houston, Texas