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Persistant Folliculitis


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#1 eazyeazy

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Posted 07 May 2011 - 05:41 AM

Hey,

I had a gut biopsy which resulted as malabsorption syndrome, 2ND MARSH scale gut degradation diagnosis unknown. I have made blood test regarding the celiac disease but they came back negative. Anyway I would like to ask if any of you had problems with permanent/recurring "folliculitis" (or a thing that reassembles it).

The lesions looks like that:
http://www.acne.org/...st-a22960-.html



thanks
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#2 ravenwoodglass

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Posted 07 May 2011 - 09:47 AM

Welcome to the board. If you were marsh 2 you likely have celiac even though your blood tests were negative. And yes I also had constant problems with my skin. In addition to the type of lesions you are dealing with I also had DH. All skin issues resolved after I went gluten free but it took a bit of time and avoiding iodine.
You may want to go gluten free and then get another endo done after you have healed. I think they likely said it wasn't celiac because of the negative blood work as most doctors don't know that we can have between 20 to 30% of us show up negative in blood work.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 eazyeazy

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Posted 08 May 2011 - 09:35 AM

thanks for replying! seems like I have no other choice - just to try the gluten-free diet
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#4 ravenwoodglass

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Posted 08 May 2011 - 10:16 AM

thanks for replying! seems like I have no other choice - just to try the gluten-free diet


We will be happy to give you all the help and support you need. If you have any questions just ask. You may be a bit moody at first as some of us do go through withdrawl but it will pass. Hope your feeling better soon.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 Mari

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Posted 08 May 2011 - 06:02 PM

I have read and experienced that celiacs have more skin problems than other people. I did a search for 'folliculitis cure' and this is one of the results
How to Cure Folliculitis | eHow.com
By Linda Hinkle Difficulty: Moderate
Folliculitis is an infection of the hair follicles. It can occur anywhere on the skin or scalp. According to the American Osteopathic College of Dermatology, most ...

www.ehow.com/how_4895286_cure-folliculitis.html

But maybe you have tried this already. I would also use a supplement of balanced B vitamins to improve skin health and Zinc to help control the infection.

Some of the forums I visit list various herbal and alternative treatments which help many people. These involve various body cleanses, diet and herbal treatment for parasites.
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DQ6/DQ8
HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302
Gluten free and Cow Dairy free since 2006

#6 gf_soph

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Posted 08 May 2011 - 06:36 PM

I would agree that going gluten free seems like a very good idea based on your testing so far.

If you skin doesn't clear up after that, I have had success with treating folliculitis. Mine occurred well after I went gluten free, I suspect as a reaction to something in my diet. It was on my scalp, neck and back and was extremely painful, it looked like big acne spots but didn't heal or come to a head. It also happened to my sister when she started taking high dose folate and vitamin D (I strongly suspect gluten intolerance for her but she is undergoing testing and isn't gluten free yet). Hers looked pretty much identical to your picture.

My doctor prescribed Doxycycline, i think 50mg once a day, which is lower than the dosage used to kill off bacteria. Apparently they also use it in the treatment of acne, as it has an effect on skin inflammation. Because I was on such a low dose it avoids the usual down sides of taking antibiotics, and I didn't have any problems with my gut while on it.

I found it very effective. I took it for about 3 months all up, I went off it twice in that time and the folliculitis recurred, the final time I went off it and my skin stayed fine as I was on a far more restricted diet, so the trigger had been removed.

My sister only took a short course and her skin is now fine.

I would urge going gluten free first and seeing how that goes, as you don't want to take antibiotics unless you need to, even when they are low dose.
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#7 eazyeazy

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Posted 14 May 2011 - 09:25 PM

hello,

i'm on gluten-free diet right now for a week already. I'm also on tetracycline antibiotics right now, low dosage. I will see how it goes.
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#8 eazyeazy

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Posted 07 June 2011 - 08:52 AM

It has been like more than 3 weeks since I have started gluten free diet. I have also finished 1 month tetracycline course a week ago. However I'm still getting the same pustules as always and I don't see much of a change :( I really don't know if I should continue this diet... :(
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#9 gf_soph

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Posted 07 June 2011 - 08:40 PM

It has been like more than 3 weeks since I have started gluten free diet. I have also finished 1 month tetracycline course a week ago. However I'm still getting the same pustules as always and I don't see much of a change :( I really don't know if I should continue this diet... :(



I know it can be really disheartening not to see results yet. However, your biopsy showed damage so I would expect it would take months for your digestive system to get closer to normal. Please don't give up on the gluten free diet yet, something is causing your damage and there's a very good bet it's gluten. Have a search around here and you will find lots of people who took several months to start feeling better, but if they gave it up sooner they never would have known how good they could feel. Are you sure that you have eliminated all sorts of cross contamination in your diet?

I also found that it took more than a month on the antibiotics for the skin problem to go stay gone. What type and dose were you taking? Did you see any change at all?

Believe me I know how hard these changes and restrictions can be, but it's way too early to give up on what you're doing.

Hang in there :)

Sophie
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#10 eazyeazy

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Posted 08 June 2011 - 01:14 AM

Yeah, I have decided to stick to the diet for another month and also I'm trying to not eat any fruits this week. About cross contamination the problem is 4 different members of my family are not gluten free. So I'm alone at this point so I kinda need to adapt - and I'm trying to. The main issue I guess is with the younglings since they don't really care about things they touch. However I'm trying to keep my stuff separated.

>I also found that it took more than a month on the antibiotics for the skin problem to go stay gone. What type and dose were >you taking? Did you see any change at all?

I was using Lymecyclinum for like a month - dosage 100 mg once a day. Well the pustules were smaller and not painful but they were still coming out. Anyway I was not really feeling good on the antibiotics (stomach pain, headaches, sweating etc). I have a feeling that this crap comes out from some nutrition deficiency or thing like that but I can't guess what I'm missing.

>Believe me I know how hard these changes and restrictions can be, but it's way too early to give up on what you're doing.
>Hang in there :)

Thanks I will try, although after all those years it is hard to find hope.
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#11 ravenwoodglass

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Posted 08 June 2011 - 04:03 AM

Give it some more time. Also if you haven't already do check all your toiletries for gluten ingredients, shampoos, conditioners, lotions etc. Have you gotten a toaster just for your gluten free bread? Gotten a new strainer for gluten-free pasta, replaced or gotten new wooden utensils for just your use? You also need to be aware that when baking with gluten flours the flour stays airborne for up to 48 hours so that should be avoided. Get your own condiments, butter, nut butters etc. It can be hard in a household that has young gluten eaters but it can be done. Make sure you wash your hands before eating or if you have to handle little ones gluten filled foods.
With a Marsh 2 biopsy you need to be on the diet and it can take a while to heal. Make sure that the meds they are giving you and all supplements are gluten free also.
Hang in there it will get better but it does take some time.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 eazyeazy

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Posted 08 June 2011 - 08:50 AM

>Give it some more time. Also if you haven't already do check all your toiletries for gluten ingredients, shampoos, >conditioners, lotions etc.

I tried but there are so many latin-name ingredients that I have no idea what they mean.

>Have you gotten a toaster just for your gluten free bread?

Yes I have my own toaster.

>replaced or gotten new wooden utensils for just your use

I have washed the old ones isn't this enough?

>Hang in there it will get better but it does take some time.

Thanks for all the support! I really appreciate that!
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#13 ravenwoodglass

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Posted 08 June 2011 - 09:35 AM

>Give it some more time. Also if you haven't already do check all your toiletries for gluten ingredients, shampoos, >conditioners, lotions etc.

I tried but there are so many latin-name ingredients that I have no idea what they mean.

>Have you gotten a toaster just for your gluten free bread?

Yes I have my own toaster.

>replaced or gotten new wooden utensils for just your use

I have washed the old ones isn't this enough?

>Hang in there it will get better but it does take some time.

Thanks for all the support! I really appreciate that!


A couple companies that will clearly label gluten ingredients in toiletries are Dove, Suave and Garneir. I use all Garneir products. You should look for wheat germ oil, oats, wheat protein for example.
No washing the wooden utensils may not be enough. You also should replace any strainers that have been used for gluten foods and scratched nonstick pans. Cast iron can be replaced or scrubbed really well and reseasoned.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 gf_soph

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Posted 09 June 2011 - 06:47 PM

Yeah, I have decided to stick to the diet for another month and also I'm trying to not eat any fruits this week. About cross contamination the problem is 4 different members of my family are not gluten free. So I'm alone at this point so I kinda need to adapt - and I'm trying to. The main issue I guess is with the younglings since they don't really care about things they touch. However I'm trying to keep my stuff separated.

I was using Lymecyclinum for like a month - dosage 100 mg once a day. Well the pustules were smaller and not painful but they were still coming out. Anyway I was not really feeling good on the antibiotics (stomach pain, headaches, sweating etc). I have a feeling that this crap comes out from some nutrition deficiency or thing like that but I can't guess what I'm missing.

Thanks I will try, although after all those years it is hard to find hope.


I'm not sure if you want to try again, but I was taking Doxycycline 50mg a day. It may be that you just dont do well with tetracycline antibiotics, or it may be the higher dose. I googled Lymecyclinum and wikipedia says that it is more effective than traditional tetracyclines as it is absorbed easier by the gut, so your 100mg dose may be have the effect of 150 mg of Doxycycline.

Just my thoughts, but my GP specifically prescribed that type and dose as it should have a lesser effect on the gut than other types. Of course you should discuss it with your doctor in case they think you may have a general problem with that class of antibiotic, but that specific type and dose has worked great for my sister and myself in managing the folliculitis. I didn't have any side effects and I have a very messed up gut, so it might work for you.

I know what it's like to try and stay safe in a house of gluten eaters, it's hard and there were times I got so frustrated that I just didn't eat. The stricter you can be the better chance you give yourself to heal. There are some good posts and articles here about common sources of cross contamination, and there are posts about safe gluten free body products.

I hope you get some rewards for your hard work soon :)
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#15 eazyeazy

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Posted 21 June 2011 - 01:28 AM

hey,

I think I will have to get back on the antibiotics since my face looks like crap again :(
I'm following the gluten free diet anyway so far no real changes for me :(
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