Gluten Free and Beyond Forums

[gfpaperdoll]

The following is a brief description of HS from the HS Foundation website.
http://www.hs-foundation.org/

"HS is an inflammatory skin disease that affects an estimated 1% of the population. The main features of HS include painful and chronically recurring, deep-seated follicular nodules, papules, pustules and abscesses, scarring, sinus tracts and recurrent discharge. The areas most commonly affected are under the arms, groin, buttocks, and under the breasts. The disease is variable and recurrent. It may present with solitary or multiple lesions in one area, with lesions in many areas, or in more severe cases may have large areas of skin affected by recurrent, draining lesions that are very difficult to heal."

HS is an autoimmune illness and people that have HS often have other autoimmune illnesses. The same autoimmune illnesses that people with gluten intolerance/celaic sometimes have.

I have opened this thread for people that have HS & are considering a gluten free/dairy free diet or have either been helped by a gluten free/dairy free diet. I will post all the information that I can find to help lead them in the direction of a gluten free and dairy free lifestyle.

From my research so far, it looks like people with HS need to be dairy free in addition to gluten free. Then of course each person might have additional food sensitivities. Just as it is fairly well known now that a lot of people with autism are helped by a gluten free, dairy free, artifical color & additive free diet, I think that within two years we will be seeing the same acceptance and progress with a gluten free/dairy free diet for people that have HS.

[gfpaperdoll]

This is some information that I found on a website that worked with people that had HS. The information is from 2004. This is the web site:
http://www.truenaturalweightloss.com/HSResearchReport.html

Some of the information from that site about other autoimmune illnesses in the people with HS that were included in this study.

"Complications Of Hidradenitis Suppurativa: Restricted limb mobility from scarring, Lymphedema due to lymphatic injury from inflammation and scarring, Squameous Cell Carcinoma (may develop in indolent sinus tracts), Arthritis secondary to inflammation injury, Anemia secondary to chronic infection, Urethral/rectal fistula, Disseminated infection (rare)

Hidradenitis Suppurativa may be observed as a primary disease without any obvious cause but has been observed with auto-immune disorders and linked with the following conditions:

Crohn Disease, Irritable bowel syndrome (IBS), Down syndrome, Certain forms of Arthritis, Graves Disease or Hashimoto Thyroiditis, Herpes Simplex, Sjogren Syndrome. The signs of Perianal HS may be clinically identical to the cutaneous manifestations of Crohn's Disease (CD). CD may be complicated by a variety of skin manifestations, and HS has been reported to precede or complicate CD."

The CD they are refering to in the above is for Crohn's Disease not Celiac Disease.

We know people that have Gluten Intolerance/Celiac can have one or more of the following autoimmune illnesses that are listed above, Crohn's Disease, IBS, Arthritis, Graves Disease, Hashimoto Thyroiditis, Sjogren Syndrome, and Anemia, in addition to other autoimmune illnesses.

[gfpaperdoll]

Some additional information from http://www.truenaturalweightloss.com/HSResearchReport.html

"HIDRADENITIS SUPPURATIVA FINDINGS AND NATURAL TREATMENT

What we have found in our research and studies is a pattern of cell mediated immune response or reaction in Hidradenitis Suppurativa.

In over 3 years of working with Hidradenitis Suppurativa sufferers as natural healers we have observed the following conditions that accompany this disease, that were reported to us by the sufferer: Irritable Bowel, Crohn's, MS, Lupus, Arthritis, High Blood Pressure, Type II Diabetes, Insulin Resistance, Acid Reflux Disease and Cancer- (very low only 2 cases known to us).

Other conditions reported are: Yeast infection, fungal infection, pain in joints, fatigue, Headaches, Anxiety, Less resistance to viruses and bacteria (i.e. catching everything that goes around), hormonal imbalances and loss of menses, Slower Wound Healing, Allergies, Dental problems (bad teeth) Itchy Skin, Adult Acne, Cysts, and other skin conditions. All of these conditions being reported to occur as chronic. The majority of Hidradenitis Suppurativa sufferers we work with also report being overweight and most being extremely overweight, however we have seen a few cases of being ideal weight or underweight, this figure of cases being very low.

Foods reported that cause a reaction or flare of Hidradenitis lesions included: Cow dairy products, Chocolate, Fried Foods that are fried in hydrogenated oil such as fast foods, Pork, Red Meats, Smoked Meats, Salty Foods, White flour breads and products, Refined Sugar and products containing refined sugars such as, cakes, candies (chocolate), and pies Some reactions reported to tropical fruits. Alcohol, coffee and other drinks containing caffeine have also been reported as causing major flares in (HS). There have been some reports of known sensitivities to gluten."

I think that if a person with HS starts a Gluten Free/Dairy Free (GF/DF) diet that if they have sensitivities to other foods that they will be able to eliminate those as they progress. Some of the foods listed above contain obvious gluten such as cake, pie and white flour breads. Some of the other foods listed could contain gluten such as candy and chocolate, smoked meats and salty foods.

I do not think that hydrogenated oil is healthy for you but the oil mentioned in the fast food example would almost surely contain traces of gluten from frying battered items in the oil. So if you got french fries thinking that you were not eating any gluten, you would probably be wrong. The only way you can know for sure is to ask the chef if they fry other items in the oil. Yes, that little amount of gluten stuck to your fries will be enough to cause a reaction or if you are asymptomatic do damage with no outward symptom.

Just wanted to add a few sentences to clarify the foods so that you will not think that you will have nothing to eat. Far from it, most of us that are gluten free eat a great diet of delicious food!

[gfpaperdoll]

This lady lives in Austin, Texas, she has HS. She just started the gluten free diet and started a blog to track her progress. Here is the link to her blog, you can leave comments if you want to.

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

[gfpaperdoll]

I have a friend that has HS. She also has osteoporosis. She has been gluten free for 3 years now. She read the book "Dangerous Grains" by James Braly, M.D. and Ron Hoggan, M.A. Actually she read it twice, started the gluten free/dairy free diet, and never looked back. She gave me permission to post a paragraph from an email that she sent me, in hopes that it might help someone else.

"Yes, I was quite surprised the other day when I realized I was GF 3 years in September. It just seems so natural these days. And I'm pleased to hear about all your new recruits. The summertime is the pits for HS for your body seems to overheat. It cannot perspire externally so it's internal, thus you feel quite nauseous & you often forget why. So I immediately start drinking lots of water. I'd rather do this than have to have terribly high dosages of anti biotics. Haven't had a major problem for a while, and I'm sure it's due to my GF diet, and staying out of hot, hot weather."

I hope this inspires someone...
Jeanne

[gfpaperdoll]

Halsgluten posted this on my original brain talk thread. We have recently emailed & he was happy for me to include the following here.

"When I first was researching Celiac Disease, I kept seeing Follicular keratosis
(keratosis pilaris), where the sweat glands become blocked with excess keratin, as a condition associated with Celiac Disease. I never followed that lead. It is common, but infected forms less so. It seems I had had [something like] it on the back of my arms before the gluten free diet.

Hal
__________________
"I had my first inkling of the gulf between his dreams and his powers."

I wanted to include this key information from Hal because it is a skin problem that is associated with gluten intolerance/celiac. There is a Keratosis Pilaris (KP) thread in this section that has information from another person with KP. Once on a gluten free diet the KP was gone!

Which leads to the next very interesting post by Kris on the brain talk forum. I have asked her to post on this forum. She is busy with work & school so might not make it here until the weekend. She has two autoimmune illnesses associated with gluten intolerance/celiac which are Keratosis Pilaris and Type I Diabetes, and in addition to those woes she has Hidradenitis Suppurativa (HS).

Jeanne

[annelb]

Thanks for putting all this great info into this thread.

I had a bumpy rash over my back and upper arms and an itchy bumpy rash at the back of my knees. Although I have no idea what these bumps were, they disappeared quickly after I stopped eating gluten.
Anne
_________________
"Half of what we have taught you is wrong. Unfortunately, we do not know which half." Dean Burwell, Harvard Medical School

[gfpaperdoll]

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

[bluerthnu]

re:

[annelb]

Hi Kris and welcome to the forum. I hope eating gluten free helps your skin problems. I never really looked at keratosis pilaris, but now I wonder if that is what was on my back and upper arms before I went gluten free.

[staceykface]

Hi, Stacey here -Jeanne mentioned my blog earlier in this thread- as did Mr. Hogan. - [url]Successfullyfailing.com[/url]

For too many years i've fought with cysts/boils/pain & embarrassment. Recalling a childhood of organized sports- fearing raising my hand to catch a ball- because of the large, imposible to love sores.

it mildly went in to remission for months at a time, after i gave up all sports and was determined to not sweat and cause more pain- afterall that's all the doctor recommended saying: "lose weight, and don't sweat"

but i'm now 26 and exhausted! & since the beginning of august i've turned more seriously to a life without gluten- i'm not sure where i heard of this possibly being related - but anything was worth a try, i was determined to not be in pain and discomfort forever- and botox is one of the recommended procedures to get rid of it, really? i'd rather just cut back and alter my diet than botox something that's not going to make my face look any younger or plumper.

i can feel the difference, my body lets me know when i ate something questionable and teaches me to not go in that direction again. my biggest/longest relationship has ended- my love affair with beer (yes i know there are other options) But i'm learning- one day at a time.

So to anyone suffering with this demoralizing condition- feel free to contact me for support, ideas, etc. i'm not an authority- i just have opinions on what helps me- and hopefully it helps you too.

[jcc]

Thanks for posting Stacey and Kris! Welcome to the forum!

Also wanted to mention that "chicken skin" is also associated with fatty acid deficiency.
http://www.google.com/search?hl=en&rlz=1T4GWYE_enUS255US...=&aqi=
_________________
Cara
www.theglutenfile.com

"One must be taught to suspect, for if one does not suspect, he does not test, and if he does not test, he does not know." H.J. Rinkel

[gfpaperdoll]

Hi Stacey, I am a big fan of your blog! I just want to know if they have gluten free buns at Terra Burger, or did you order without a bun? If they do have GF buns I am going to eat there next time I am in Austin! I sent the link to a friend of mine that is GF for a couple of months now & whining about a hamburger! She has ordered bun pans...

The healthy GF diet is certainly a process. That is great that you gave up the beer! I often think that it is the gluten in the beer that keep people drinking it all the time. That gluten addiction is the worst.

Please make yourself at home around here. Feel free to post a thread with anything that you have discovered about your diet that is helping you.
Thanks & welcome
jeanne

[staceykface]

Yes, terraburger makes their own glutenfree hamburger buns!! Delicious!
Kind of reminiscent of schlotsky's buns - if you've ever had the pleasure of enjoying.
Sour-doughy in texture. And they offer tons of vegan options also- and all organic stuff!
It's great.

[gfpaperdoll]

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 IMO, 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.”