Hidradenitis Suppurativa

[teaandtoastgirl]

"One weird thing I had pre-GF that I haven't had since... my eyelids blowing up to enormous size as I slept. Boy, that was totally weird."

Yikes, that sounds like an alien spider on the loose.

Leslie

[teaandtoastgirl]

I just received this report regarding HS. GFPaperdoll, your friend might benefit from this. Bewolf, have you tried this? I know both Zinc and Vit D are under recommended for daily intake by the FDA. Perhaps HS comes about due to deficiency as well as genetics. Leslie

http://www.innovations-report.de/htm...cht-83474.html

Zinc salts effective in treating Verneuil's disease (hidradenitis suppurativa)
30.04.2007 innovations report - Bad Homburg,Germany
A pilot study published in the journal "Dermatology" shows that zinc salts can provide an effective treatment for Verneuil's disease (hidradenitis suppurativa).

Verneuil's disease is a chronic, suppurative dermatosis involving the apocrine glands with a severe impact on the quality of life.

There is no standard treatment for this disease, and the drugs usually prescribed are often poorly effective. Therefore, a new therapeutic approach based on zinc salts was investigated with 22 patients, mainly from grade I or II in Hurley’s clinical staging.

All patients included had previously been prescribed a treatment (antibiotic, isotretinoin, surgery or anti-androgens), which was inefficient. The patients were treated with 90 mg of zinc gluconate per day (15 mg zinc, 6 times per day).

A clinical response in all patients was observed, with 8 complete remissions and 14 partial remissions. When complete remission was obtained, the treatment was progressively decreased; however, relapses occurred when reaching 2-4 capsules per day, depending on the severity of the disease. Recurrence disappeared when the dosage was increased again, suggesting that the treatment is suppressive rather than curative.

The treatment was well tolerated (4/22 patients experiencing side-effects, mainly gastro-intestinal), and this is crucial in the context of a chronic disease strongly affecting quality of life.

[halsgluten]

Originally Posted by GFPaperdoll

....but it is in the simplest of terms, stopped up sweat glands. It is considered a rare disease.

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 it on the back of my arms before the gluten free diet.

Hal

[teaandtoastgirl]

Someone asked me about test results for our son and HS.

*HIs B12 looks fine 683 in a range of 200-900
*Ferritin 54 range 23-70
*Hemocrit? 15.8 range is 12-17 and 47.3 range is 36-46
*Testosterone (doc said "should be through the roof since he is in puberty")
377 range is 280-800. I would not call this through the roof. Doc said double score so 1600 could be normal for a kid in puberty. his looks like it is on the low side of normal. Maybe thyroid is gluten affected. Anyone know?
*Lymphocytes 27 range is 30-40 (his are up from 24 with 2 months GF)
* Zinc, Vit D and Antigliadin antibodies were sent out.

Leslie

[GFPaperdoll]

here is a post that was posted on celiac.com Nov 13, 2008. on the Pre-diagnosis thread, there is a post titled HS...
hope the original poster does not mind my report to this forum. It is just so unusual to see a post on HS, I had to share...

"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."

[GFPaperdoll]

And another post yesterday.
"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! "

[GFPaperdoll]

I was just doing a little reading on HS & found this site
http://www.truenaturalweightloss.com...rchReport.html

what grabbed my attention was this:

"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,Down syndrome,Certain forms of arthritis,Graves disease or Hashimoto thyroiditis,Herpes simplex,Sjogren syndrome.[37The signs of perianal HS may be clinically identical to the cutaneous manifestations of Crohn's Disease. CD may be complicated by a variety of skin manifestations, and HS has been reported to precede or complicate CD.[2]"

The bold parts are mine, the symptoms in bold look like gluten intolerance. I am not sure how they got Herpes in there, somehow I do not think that belongs in there. This just confirms what I thought all along. The day will soon come when people start figuring this out. I think that HS is just another symtom of gluten intolerance just like Dermatitis Herpaformis is an automatic diagnosis of celiac. Maybe HS is the skin manifestation of gluten intolerance.

note to edit, that Down Syndrome is not a symptom but a condition that is often associated with the need for a gluten free diet -

Okay everyone think this over, I am off to finish reading the article. I got so excited I had to post this news!!!!

[GFPaperdoll]

OMG I just want to cry... This is at the bottom of the article.

"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.

Results of Hidradenitis Suppurativa patient survey at HS-USA total of 1685 respondents as to this date 10/29/04. Gender responses being 87% female (1463) and 12% male (206) with dominate age being 31-40 34% (573) and highest percent (1314) 78% being of Caucasian heritage."

me again, okay this just about covers all the other gluten sensitive symptoms.
IMO, the reason that they are reacting to so many foods is the same old underlying problem with the gluten grains & grains in general. The damaged and compromised gut issues makes digestion a tricky issue... Plus they probably do not know that in most every restaurant that the meat is basted with a mixture that contains at least barley malt.

[GFPaperdoll]

This is such a great article. Please read !!!!

If anyone with HS/acne inversa gets to this site, please read this article it is from 2004.

As this lady that had HS found out her HS was tied to the foods she ate. It looks like she has spent 5 years prior to 2004 healing people of HS.

To the people with HS that have tried to lose weight but have been unsuccessful , do not feel badly, trying to lose weight while eating gluten will not happen for people that have a problem with gluten. same thing with tooth decay & other teeth problems, not your fault, it is caused by a vitamin deficiency. (now that I am GF I never even have plaque, the dental hygentists can not believe it when they see my teeth - now the color is awful from a lifetime of antibotics from gluten induced bladder infections- but they are healthy, no gum disease & no plaque.)

Among the people that are GF we each have other things that we cannot eat, the offending foods are different for most of us, well almost all of us, some people eat everything except gluten...

[Zonulin]

Very interesting - thanks for posting! I've never heard of Hidradenitis Suppurativa, but there are 547 references to it on PubMed. Interesting that few in the medical community are making the food connection.

Karen