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Hidradenitis Supporativa, Anybody?


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#1 GrammaMae

 
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Posted 04 October 2008 - 10:07 AM

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!
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#2 nora_n

 
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Posted 04 October 2008 - 01:55 PM

I remember there were at least two discussions about hidraeenitis not coming back after going gluten-free, but I could not find the discussion where also a doctor was discussed with the search function. The point was that the connection between hidradenitis and gluten is virtually unknown and only this one doctor had caught onto it.

today in the local newspaper there was this article about a young woman with hidradenitis under the arms who has had 31 surgries and she blames the hospital for not doing a good enough job and that they did not put in drains last time and she feels that was the cause of the things returning. well, it is not. It is autoimmune and she needs someone to tell her to try totally gluten-free.

I guess it would be better for you to post in the pre-diagnosis folder here, and to ask for the ordinary 6 celiac blood tests first.

nora
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#3 GrammaMae

 
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Posted 05 October 2008 - 05:03 AM

Thank you, Nora. Your suggestions are helpful. I will repost in the folder you suggested. I haven't had the celiac tests done. I think I will start there!
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#4 nora_n

 
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Posted 05 October 2008 - 07:57 AM

I see the thread has been moved here, hopefully you get more answers here.

Just one thing: You need to eat a lot of gluten for the ordinary celiac tests to be positive.
I happened to be low-carb and therefore I have no official diagnosis. I should have been back on gluten much longer before testing (in order to get positive tests. I should have gotten biopsies for DH already back in 03.)

nora
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#5 gfpaperdoll

 
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Posted 05 October 2008 - 01:18 PM

HS is a very serious illness & can kill you. I would not be eating any gluten to test positive for a test. One bad boil in the wrong place... Please do not be eating gluten...

I have a friend that has this & he has no problems as long as he is gluten-free. I think it is also connected to the glutamates, such as in MSG, soy, dairy & of course all the gluten grains. Here is my favorite link for that
http://www.msgtruth.org/avoid.htm
scroll down to the bottom of the above link & see the pictures of foods with high glutamates & then look at how much higher those foods become when they are processed & added to processed foods as "natural flavoring". Ever notice how you do not see msg much anymore on all the labels? It is hiding in natural flavoring...

There is another gluten-free board that a lady has a 14 year old son with HS. He was diagnosed with that, & then later with celiac. When he went gluten-free his HS cleared up. His doctors were shocked! ;) On that same board is a gluten-free lady in Maine who knows a lady that is also gluten-free & has HS. PM me if you wnat more details...

There is an HS forum & someone had posted on the dietary thread about gluten free helping to clear up HS but the people there will have none of it. I posted there also, but those people are in pain & not very nice...

I think one reason that it is hard for them to figure out, is that for them it is not only the gluten, but the dairy, and soy as well...Most people that are soooo sick are not going to radically change their diet. Also, they love their doctors & think their doctors have their best interest at heart... I also think that if you have HS that you should be mostly grain free on a daily basis. Add in some grains for treats & maybe corn tortillas if you can tolerate corn. But, I would not eat corn & rice on the same day... Also, I think that coconut milk & coconut oil is very healthy for you...

There is a few threads on the gluten-free boards about HS. Some people report having the odd boil but did not know what it was. The boils might appear in the groin area.

My daughter always had boils as a teenager, that had to be lanced, I often wonder if she has HS.
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#6 gfpaperdoll

 
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Posted 05 October 2008 - 01:55 PM

GrammaMae, I posted on the other forum on the HS thread & was reading it. Would you consider getting the gene test thru Enterolab? Some of us are very curious if we can link this HS to one of the "celiac" genes.

We are looking at the DQ1 - 0501. Which has very recently been found to be part of a DQ2 gene.

If we could find a common gene it might help the people that are dying with HS, by having some info that they could take to their doctor...

Thank you for posting about HS.
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#7 GrammaMae

 
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Posted 22 October 2008 - 07:20 AM

I hadn't checked for replies in a while - I've been so busy learning "how to eat"! I haven't gotten into another doctor yet either, so nothing concrete to report. Actually, I have been feeling so much better and my skin issue is so much better that I have been enjoying the break from the stress of it all. However, I think I would benefit from an "official" diagnosis, so I need to get back on that project today. I REALLY APPRECIATE the responses to my post and will look into everything mentioned. Incidently, I have already eliminated (that I know of) wheat products, soy products and MSG (by name...I will explore the link to see what else it is called) and have added coconut: oil, milk, water and flour to my diet.
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#8 apoppy

 
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Posted 12 November 2008 - 10:07 PM

I have suffered with Hidradenitis Suppurativa for over 30 years. I have some stage 3 areas. I recently decided to go gluten free because of severe diarrhea, headaches, rashes, joint pain, fatigue and more. Much to my surprise, the HS went into complete remission after about 4 to 6 weeks of eating gluten-free. The only time this had ever happened before was when I tried the Atkins Diet twice in the past. But I didn't make the connection then.
After 6 weeks of eating gluten-free, my husband convinced me to stop eating gluten-free. He didn't like me "obsessing" over labels and questioning everything that went into my mouth. He even said maybe we shouldn't be married if I have to eat so differently. I ate a wheat roll for dinner and the next day I ate regular speghetti. You would not believe how bad the HS returned! I had 12 NEW lesions and most of the old lesions re-activated. I was in so much pain. Along with it came terrible joint pain, fatigue, headache and return of the dreaded diarrhea. It finally hit me! I discovered on my own that the HS was surely connected to eating gluten. As soon as I stopped eathing the gluten once again I felt so much better. I was able to move without pain after 2 days and most of the oozing had stopped. Now I notice that brief encounters with gluten (giving my grandson cookies, making regular dinners and lunch for my family, cleaning up the kitchen that has bread crumbs) results in a return of the itching and burning and oozing of these lesions. You would not believe how many doctors I have seen for this condition. I have been to The University of Pittsburgh Hospital, Cleveland Clinic, Western Reserve University Hosp. and a slew of dermo. docs locally. Not one ever mentioned gluten.
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#9 GrammaMae

 
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Posted 13 November 2008 - 05:17 PM

I have suffered with Hidradenitis Suppurativa for over 30 years. I have some stage 3 areas. I recently decided to go gluten free because of severe diarrhea, headaches, rashes, joint pain, fatigue and more. Much to my surprise, the HS went into complete remission after about 4 to 6 weeks of eating gluten-free. The only time this had ever happened before was when I tried the Atkins Diet twice in the past. But I didn't make the connection then.
After 6 weeks of eating gluten-free, my husband convinced me to stop eating gluten-free. He didn't like me "obsessing" over labels and questioning everything that went into my mouth. He even said maybe we shouldn't be married if I have to eat so differently. I ate a wheat roll for dinner and the next day I ate regular speghetti. You would not believe how bad the HS returned! I had 12 NEW lesions and most of the old lesions re-activated. I was in so much pain. Along with it came terrible joint pain, fatigue, headache and return of the dreaded diarrhea. It finally hit me! I discovered on my own that the HS was surely connected to eating gluten. As soon as I stopped eathing the gluten once again I felt so much better. I was able to move without pain after 2 days and most of the oozing had stopped. Now I notice that brief encounters with gluten (giving my grandson cookies, making regular dinners and lunch for my family, cleaning up the kitchen that has bread crumbs) results in a return of the itching and burning and oozing of these lesions. You would not believe how many doctors I have seen for this condition. I have been to The University of Pittsburgh Hospital, Cleveland Clinic, Western Reserve University Hosp. and a slew of dermo. docs locally. Not one ever mentioned gluten.


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#10 GrammaMae

 
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Posted 13 November 2008 - 05:23 PM

Thank you for taking the time to post! I am so encouraged by what you wrote. I'm happy to hear of your success! I am in the middle of a small breakout after visiting with family out of state and having less control over what I eat. I am beginning to see that even small amounts of gluten can set HS off. Please keep me posted :)
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#11 apoppy

 
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Posted 27 November 2008 - 09:11 PM

Since going gluten-free I have suffered several episodes of the hidradenitis suppurativa flaring up for no apparent reason. So I thought. With every episode I have been able to look back at what I ate and discover the hidden gluten. Yesterday it was salami! Another time it was malt. And I stupidly ate swiss n' rye cheese without even thinking about the rye. My daughter pointed it out to me after I complained that I had no idea what was causing a new HS outbreak, diarhea, and severe headache. I now keep a daily diary of everything I eat and any symtoms. I want to be able to show my doctor accurate records so that he may be able to help other sufferers. I always was a label reader because I must also avoid MSG. I now know that I must read EVERY label and educate myself on safe and not safe foods.
I made gluten-free pumkin pie (crust) for Thanksgiving and everyone was surprised that it tasted good. My family just assumed that eating gluten free had to be miserable.
My local grocery store had a few of Bob's Red Mill gluten-free baking products, but sold out and didn't seem to be restocking any of it. I typed up a list of the gluten-free products I would buy and presented it to the manager along with a short description of celiac desease/ gluten intolorance. That very same week the shelves were stocked with almost every item I asked for!
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#12 gfpaperdoll

 
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Posted 28 November 2008 - 02:41 AM

apoppy thank you so much for posting this. That is so wonderful that you have made the connection, to HS & gluten. I do not have HS, but I do see the connection as a friend of mine has it, but also has gluten intolerance & is on a gluten-free diet.

I forgot to check how long you have been gluten-free now, but you have to check for cross contamination, after a few weeks. & really if you can it is best to not cook gluten foods, just cook all meals gluten-free, if at all possible. You certainly do not want to cook with any wheat flour because it poofs up in the air & gets on everything & you breathe it in & it makes you sick. Be sure to replace your porous items like cast iron skillets (or treat them in the oven , I just got a new one) & teflon - stainless steel pans are better, new wooden spoons, new pasta strainer, & watch your old cook book if it is like mine it is covered in flour.

I envision the day when a diagnosis of HS will be the same result of getting a diagnosis of DH, & that would be an automatic diagnosis of celiac disease.

I hope that you will be able to convince your doctor of this new "treatment" & he spreads the word to other people with HS. Also, if you are on any HS boards, please post about your findings, I tried but I do not have HS & I was really not welcomed with my "cure". Those people are used to buying & trying everything that comes down the pike. They just cannot think that the everyday food that they are eating is killing them.

Please PM me if you need any recipes or any help with the diet. Although, I pretty much eat grain free whole foods. Not much processed stuff in my kitchen.

I have found that a combination of sorghum flour, tapioca flour, & potato starch makes an excellent baked product. Be careful with Bob's Red Mill stuff, I cannot eat his stuff, just a little too much cross contamination. I also cannot eat the gluten free Mary's Gone Crackers. So be careful about things that you think are gluten-free but might have some CC issues. I am very very sensitive & can tell within 20 minutes if I have gotten glutened. I am a good "canary in the gluten mine".

I do recommend the Enjoy Life chocolate chips, no gluten, no soy & no dairy.

This is indeed a Great Thanksgiving. Thank you so much for the post. & congratulations to you for discovering your way to good health.

P.S. yes, don't let anyone tell you to eat gluten ever again. I do not know your husband, but sometimes a spouse gets used to a certain routine & worries when a change occurs, even for the better. For some of us when we went gluten free it changed our personalities a lot, for the better. & heck, we just feel so darn good, energetic & healthy, we drive most people nuts! I got badly glutened at one of my regular restaurants a month or so ago, & I thought oh, this is what most people feel like all the time. it was an amazing realization.
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#13 shuswapian

 
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Posted 10 September 2009 - 05:39 AM

I have suffered with Hidradenitis Suppurativa for over 30 years. I have some stage 3 areas. I recently decided to go gluten free because of severe diarrhea, headaches, rashes, joint pain, fatigue and more. Much to my surprise, the HS went into complete remission after about 4 to 6 weeks of eating gluten-free. The only time this had ever happened before was when I tried the Atkins Diet twice in the past. But I didn't make the connection then.
After 6 weeks of eating gluten-free, my husband convinced me to stop eating gluten-free. He didn't like me "obsessing" over labels and questioning everything that went into my mouth. He even said maybe we shouldn't be married if I have to eat so differently. I ate a wheat roll for dinner and the next day I ate regular speghetti. You would not believe how bad the HS returned! I had 12 NEW lesions and most of the old lesions re-activated. I was in so much pain. Along with it came terrible joint pain, fatigue, headache and return of the dreaded diarrhea. It finally hit me! I discovered on my own that the HS was surely connected to eating gluten. As soon as I stopped eathing the gluten once again I felt so much better. I was able to move without pain after 2 days and most of the oozing had stopped. Now I notice that brief encounters with gluten (giving my grandson cookies, making regular dinners and lunch for my family, cleaning up the kitchen that has bread crumbs) results in a return of the itching and burning and oozing of these lesions. You would not believe how many doctors I have seen for this condition. I have been to The University of Pittsburgh Hospital, Cleveland Clinic, Western Reserve University Hosp. and a slew of dermo. docs locally. Not one ever mentioned gluten.


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#14 shuswapian

 
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Posted 10 September 2009 - 06:16 AM

Hello I am 46 year old female who has suffered from boils as long as i can remember! Going from one Dr. to another only for them to give me more atibiotics and send me home. I have had some Dr.s not even look at them just write a perscription. One day about 3 years ago I was looking up boils on the pc and after several pages of reading I found a link to HS. When I opened the link and saw the pictures I all most collapsed as that is what I have had for so many years with no Diagnosis from any one including a Dermatolagist. So I have suffered greatly over the years. Including 3 times boils in my throat that were very dangerous. Since I was about 17 I have had what I thought was ibs being taken to the hospital several times over the years with excrusiating pains in my stoumach. I am home sick now and have been in and out of the hospital all tests coming back negative. I swear i have them in my intestines but the tests dont show them.
NOW!! my sister who is very concerned for me told me to look up Celiac as she has been diagnosed with it. So I did I had some of the symtoms but it says peoples sytems are different so I wasnt sure if that was the connection untill.. i googled celiac/hs then BOOM it all came together I have been allergic to gluten my whole life and no Doctor caught it in 46 years and with all my symtems. I was trying to eat pretzels and soda crackers to settle my stoumach what a mistake. All Gluten!
I am a cook and feed 100 seniors everyday working with many many ingredients containing gluten no wonder I am so sick and never got boils with my last 2 periods which ALLWAYS happens to me they were in my stoumach. I am sitting here very emotional its like finding something you have been looking for your whole life. I am so glad i never let them cut me up or remove my belly button like they suggested.
I love the internet for giving me the power to find answers for myself as there is a reason they call it a practice as they are all practicing and try to get it right but many times doing the opposite. I have a drawer full of different perscriptions for many different things they thought it was for if i took them all I would be dead! Thank- you so very very much for this information and now I am going today to see my new Doctor for a celiac test. I have sworn off of all gluten and will hope and pray a good mask will help on my job as I love my job and couldnt imagine not cooking just my luck I guess being deadly allergic to the thing you love the most and your lively hood it sucks. But at least i think I am finally on the right track for the first time in 46 years
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#15 darlindeb25

 
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Posted 11 September 2009 - 06:04 PM

I think I missed this thread the first time through. I think my daughter may be dealing with this. I never connected her problem with gluten, although I do believe she needs to be gluten free.

Are you going to get tested for this? What are the tests?

Feel free to email me: darlindeb25@aol.com

Thank you, Deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!




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