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Persistant Folliculitis
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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/messageboard/post-a22960-.html

thanks

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

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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.

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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

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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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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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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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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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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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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.

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>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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>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.

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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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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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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 :(

Have you eliminated iodine as well? If you haven't you may want to give that a shot in addition to the gluten-free diet. If you do go with another course of antibiotics do be sure to get some probiotics started when you start taking them. I use yogurt but if you can't do dairy they can be found in pill form.

Are you eating mostly whole unprocessed foods? Gluten can be a bit sneaky if that is what is causing the lesions you need to be very strict at least until they are well healed.

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While having this diet I was very strict - eggs, chicken, fruits, rice and gluten free bread. Anyway I will keep fighting.

Btw. My mother just had her biopsy result today - Marsh 3B degradation... :(

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Ok, I'm starting new cycle of antibiotics today :/ I hope it will work this time. I'm still on the gluten free diet....

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I'm still on glutenfree/dairy free diet and still on antibiotics. As soon as I finish the antibiotics course everything come back again. I doubt diet can help me with this issue :(

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I had skin conditions for the past two years. I kept telling the doctors it was fungal folliculitis. They told me I had Rosacea, acne, etc, you name it. 16 days ago I stopped eating everything except for raw fruits/vegetables, mostly just juicing them (Watch "Fat, Sick, and Nearly Dead"), and I got a punch skin biopsy the same day. In 10 days my folliculitis resolved. The pathology report came back as "Chronic Folliculitis". When the Dr. saw me she asked what I had done to clear my forehead. I told her I stopped eating meat/dairy/wheat/ etc. So now, I just need to find out what the offending food item/type is that is causing the problem. I am awaiting blood results back for gluten and dairy allergy. However, from what I understand, the allergy results can come back negative, but that does not necessarily mean their isnt some sort of intolerance. Question: Is the intolerance diagnosed by an allergist, primarily through elimination diet trial and error?

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I had skin conditions for the past two years. I kept telling the doctors it was fungal folliculitis. They told me I had Rosacea, acne, etc, you name it. 16 days ago I stopped eating everything except for raw fruits/vegetables, mostly just juicing them (Watch "Fat, Sick, and Nearly Dead"), and I got a punch skin biopsy the same day. In 10 days my folliculitis resolved. The pathology report came back as "Chronic Folliculitis". When the Dr. saw me she asked what I had done to clear my forehead. I told her I stopped eating meat/dairy/wheat/ etc. So now, I just need to find out what the offending food item/type is that is causing the problem. I am awaiting blood results back for gluten and dairy allergy. However, from what I understand, the allergy results can come back negative, but that does not necessarily mean their isnt some sort of intolerance. Question: Is the intolerance diagnosed by an allergist, primarily through elimination diet trial and error?

Well i don't have any diagnosis - except the gut biopsy. But my food allergy panel came negative. I'm allergic to dust mites, dogs and grass (as from the other panel) - but I doubt this is the issue. How is your diet going on? Aren't you hungry all the time? I'm trying the paleo diet now but so far no positive results. Plus I'm super skinny already...

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I wish you luck with this. I had a similar problem, and still do but it doesn't seem to be connected to gluten since I have been gluten-free since the first of the year.

Mine is very minor and only seems to occur on my forearms or bicep area. I'm a fairly hairy guy, so that doesn't help I guess.

I never had a problem with acne or anything else until a few years ago. I could go to bed with no skin issues, and wake up in the morning with a raised red spot on my arm.

It quickly develops a small yellowish head that tears open easily when I shower. It then leaves a red spot that will remain visible for days to weeks.

I can go for literally months without seeing any, and then all of a sudden I will start getting one or two a week.

My doc says it's because I wear long sleeved t-shirts and sweat a lot due to my business. I wear the long sleeves to avoid sun exposure, since I am at risk for skin cancer due to all of my previous EXTENSIVE exposure for many years.

He says the sweat that builds up, combined with the rubbing of the fabric on my 'hairy arms' is what causes it. I never get it anywhere else though.

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so yesterday my doc advised me to stop the antibiotics. today my face looks like shit again. i will try to limit iodine intake now. Jesus this is so depressing.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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