scalp folliculitis/DH

[kpool]

Hi! I'm new and have a million questions but will start with this one. 

I began having very painful folliculitis on the crown of my head in early May and simultaneously broke out in rashes all over my body that resembled poison ivy. Many doctor visits later and 3 mos of antibiotics, a nice lady at the health food store said I probably had DH. I immediately went gluten free and have been amazed at the positive change in so many symptoms. However, the folliculitis just will not leave! It gets a little better then comes back. It has been two weeks today since I ditched gluten and with all the positive changes I've seen, I just assumed the folliculitis would also be gone.  My question is: Should I just give it more time? Or do I just need to get back on the bactrim, I guess for the rest of my life? Please, if anyone has any suggestions I would love to hear.  Thank you very much!

 

 

 

[ravenwoodglass]

Ideally you would have gone to the derm and asked for them to biopsy for DH. The biopsy is done to tissue next to an active lesion. You also should have had blood work to check for celiac antibodies before going gluten free. It is good news that the diet has helped with other symptoms but do be aware that if you want a doctor's diagnosis you will need to do a gluten challenge before that testing can be done.

If you do have DH it can take a while for the lesions to heal and for new ones to stop popping up. It takes some time for the antibodies to leave the skin and even a tiny amount of gluten can reativate those antibodies. Have you checked your shampoos and other toiletries for gluten ingredients? While gluten can not be absorbed by intact skin the lesions present are not intact. Iodine can also keep the antibodies active so do go light on it for a bit. It is an important nutrient so don't give it up forever. 

Do make sure to check out the 'Newbie 101' thread at the top of the coping section for good info on staying safe. I hope you heal quickly but it can take some time.

[kpool]

30 minutes ago, ravenwoodglass said:

Ideally you would have gone to the derm and asked for them to biopsy for DH. The biopsy is done to tissue next to an active lesion. You also should have had blood work to check for celiac antibodies before going gluten free. It is good news that the diet has helped with other symptoms but do be aware that if you want a doctor's diagnosis you will need to do a gluten challenge before that testing can be done.

If you do have DH it can take a while for the lesions to heal and for new ones to stop popping up. It takes some time for the antibodies to leave the skin and even a tiny amount of gluten can reativate those antibodies. Have you checked your shampoos and other toiletries for gluten ingredients? While gluten can not be absorbed by intact skin the lesions present are not intact. Iodine can also keep the antibodies active so do go light on it for a bit. It is an important nutrient so don't give it up forever. 

Do make sure to check out the 'Newbie 101' thread at the top of the coping section for good info on staying safe. I hope you heal quickly but it can take some time.

Thank you for replying. In my area, I was not able to get a new patient appointment with a derm until December! I am contemplating making a trip somewhere else to see one.  I am aware that I need to be eating gluten before any testing but at this time, after the dramatic results (mainly with my arthritis) I have seen, I am just not willing to eat it again. Maybe in the future. A derm PA I saw did a culture and at that time the folliculitis cultured staph. I believe the bactrim cleared up the staph because the lesions are nowhere near as painful now, just very annoying. The allover redness and horrid itching on my scalp have cleared completely with the diet as have the recurrent skin rashes. I am using the shampoo and conditioner the PA recommended but when she gave them to me, we were not aware of the gluten issue so I need to check. I am also alternating that with prescription ketoconazole shampoo and a steroid scalp oil which helps a lot for a couple days. I try not to do the oil more than a couple times a week because it is a steroid.  I just wonder if there is something else in my diet or just need longer gluten-free. Strange this all popped up at 54 years old??

[plumbago]

1 hour ago, kpool said:

My question is: Should I just give it more time? Or do I just need to get back on the bactrim, I guess for the rest of my life?

Hopefully you have more choices than that.

DH (if it was DH, which it sounds like it probably was) and the folliculitis may not be related. Or, you could be right, and it just takes more time. Check back in with the doctor. Let her/him know exactly which medications you are on, some can induce folliculitis. Let the doc know if it runs in your family, whether or not you think your immune system is suppressed. Having it on top of your head must be painful.

ETA: On re-reading, I see you've been gluten-free for two weeks. That's not very long - give it more time.

Edited August 28, 2020 by plumbago

[kpool]

Yes, very painful. Sorry for the grossness, but I attached pics of my scalp and the blisters on my finger when the skin rash was happening. If anyone has dealt with DH and/or folliculitis like this, please advise. I had to tell my GP I think its DH and took myself off gluten. Some changes have been miraculous so I can only assume gluten is at least a contributor. 

[plumbago]

Thanks for posting the pics. Is that your finger in the second photo? I sometimes have atopic dermatitis (aka eczema) and it occasionally has those things that look like blistery vesicules, like that. I think biopsy is the only way to know for sure that it is DH. My biopsy was negative for DH.

As for your scalp, also thanks for posting that photo and giving us your age. Is it possible that it's either the hair dye or some process in dyeing your hair? I'm reaching here (!), but as we age, our immune systems wane somewhat (and aren't we all learning about the immune system now?!), and make us more susceptible to even things like allergens. I really have no idea what precisely is going on in your case, but what I am thinking is that perhaps you had an allergic reaction and a hair follicle(s) got infected.

[kpool]

Yes that is my right ring finger and I had similar places everywhere, and also other rashy places that were not blistered. Its all so confusing. And I agree about the hair dye! As of May 20, my last color, never again will chemicals touch my head! But, that long ago, and 3 mos of antibiotics would have cleared that up, don't you think? I'm reaching as well . I can't say for sure the dye had something to do with it because it is the same formula that's been used for 15 years. Regardless, any dye cannot be good for me, so I am finished and I feel free. I'm a natural redhead and if I'm like my older brothers, I should fade to a strawberry blond which is great with me. I just wish I could figure out the folliculitis. I have researched so many things and still have no answers.  Thank you for replying. It helps a lot!!

[cyclinglady]

Excellent advice has been given.  I just wanted you to know that I was diagnosed with celiac disease in my 50’s.  It can develop at any age, though, looking back in my case, I had it for decades based in chronic anemia and other health issues I never really paid attention to.  I also wanted to support your natural hair color.  Mine is a lovely grey.  I tried dying it for two years from pressure of all people, my mother!  I guess she did not want me looking old.  My family grays beautifully and I get lots of compliments.  Now, with the pandemic, I see a lot more grey!  Finally, two weeks is not enough time.  Based on member input, expect healing time  to be months at the very least (longer with gluten exposures).  
 

Take care!  

[kpool]

Thank you for the encouraging words. I am grateful to have found this board. I suspect I have had this a long time as well.  Chronic constipation, the osteos--arthritis and porosis :), and lifelong strange rashes, a couple broken bones, and a toe joint replacement and a partridge in a pear tree lol! Hopefully I am on the road to seeing at least some relief.  All the best to you!

[cyclinglady]

Oh!  I fracture two vertebrae dozing NOTHING two months after my celiac disease diagnosis — osteoporosis!  A few bone scans show no improvement, but I have not had a break in seven years.  Whew!  
 

And that red hair?  Could you be Irish?  That is me (well, part of me).  Celiac disease is pretty prevalent among the Irish.  

[kpool]

That's very interesting. Yes we are of Irish descent on my father's side. My brothers have also suffered lifelong skin rashes. Seems we do not have the GI issues some have with celiac (well except for my horrid constipation which is much better now) so I do not know for sure. However, I refuse to eat gluten again just to be tested, so I may never know for sure. Instead, I plan to just enjoy being able to walk again without constant pain in my knees and back! I guess I am very fortunate, because I don't really find the diet difficult at all.  It will be a little more challenging to find all the hidden sources however.

[hipretty]

On 8/28/2020 at 8:28 AM, ravenwoodglass said:

Ideally you would have gone to the derm and asked for them to biopsy for DH. The biopsy is done to tissue next to an active lesion. You also should have had blood work to check for celiac antibodies before going gluten free. It is good news that the diet has helped with other symptoms but do be aware that if you want a doctor's diagnosis you will need to do a gluten challenge before that testing can be done.

If you do have DH it can take a while for the lesions to heal and for new ones to stop popping up. It takes some time for the antibodies to leave the skin and even a tiny amount of gluten can reativate those antibodies. Have you checked your shampoos and other toiletries for gluten ingredients? While gluten can not be absorbed by intact skin the lesions present are not intact. Iodine can also keep the antibodies active so do go light on it for a bit. It is an important nutrient so don't give it up forever. 

Do make sure to check out the 'Newbie 101' thread at the top of the coping section for good info on staying safe. I hope you heal quickly but it can take some time.

On 8/28/2020 at 7:42 AM, kpool said:

Hi! I'm new and have a million questions but will start with this one. 

I began having very painful folliculitis on the crown of my head in early May and simultaneously broke out in rashes all over my body that resembled poison ivy. Many doctor visits later and 3 mos of antibiotics, a nice lady at the health food store said I probably had DH. I immediately went gluten free and have been amazed at the positive change in so many symptoms. However, the folliculitis just will not leave! It gets a little better then comes back. It has been two weeks today since I ditched gluten and with all the positive changes I've seen, I just assumed the folliculitis would also be gone.  My question is: Should I just give it more time? Or do I just need to get back on the bactrim, I guess for the rest of my life? Please, if anyone has any suggestions I would love to hear.  Thank you very much!

 

 

 

My concern is Bactrim is a sulfa based antibiotic. Why would anyone stay on Bactrim "the rest of their life"???

 I actually developed an allergy to Bactrim and had head to toe welts all over my body (literally from between the toes, up to the eyelids AND the entire scalp, the upper lip heading into the nostrils.......and then on the back of my body.... down the neck al the way to the heels and EVERYWHERE in between. It was horrifically maddening.  I realized through the years all sulfa drugs were intolerable by me. Then through the years (as a Celiac) many other antibiotics as well produced a similar reaction. Was it gluten based fillers? I do not know. But I am wondering if you developed an allergy in there somewhere....when you "simultaneously broke out in rashes all over my body that resembled poison ivy." Who diagnosed you with folliculitis? Were you put on something at that time before or even simultaneously with the Bactrim? Is the folliculitis still there along with the poison ivy type eruptions?

 

I too would be concerned that folliculitis was even the correct diagnosis and that you have undiagnosed DH!!!

I think if you can,  you should find someone who is a specialist in Celiac related issues (of course we know by know they are NOT all gastro). Certainly avoid all meds UNLESS you can confirm they are Gluten Free. 

Any other Celiacs here find Bactrim / other sulfa based meds / or any antibiotics troublesome? Perhaps you know which contain (or did contain at one time) gluten now or years ago.

cyclinglady: I haven't been on here in so long, your signature sounded so much like me, I had to look and see if I composed it. ☺️

By now since first joining Celiac.com with my Celiac Disease Dx triggered by Gallbladder surgery, I can add to my health issues Hashimotos Thyroiditis, Hypothyroidism and Type 2 (while eating clean and working out regularly) Barrett's syndrome, lot's of skin itching issues...also a horrifically itchy scalp Not related to lice, sodium laurel sulfates in shampoos or anything else I can pinpoint.

 

I hope you get your diagnosis soon and have some relief! 

Love & Light

Tee

 

[kpool]

That reaction sounds horrible! I am so sorry you had to deal with that and those other issues as well. This stuff is definitely not for the faint of heart. I truly wish the best for you. Thank you for all the input. My daughters are both also allergic to bactrim and I suspected I would be as well but I don't believe thats the case. I had the skin rashes and the folliculitis before I began taking it.  My GP is the one who diagnosed folliculitis because as I mentioned I cannot get into a dermatologist until December. I do have good news to report though. I believe this gluten free thing has been a true miracle for me. This morning I woke up and there is no pain whatsoever in my scalp and everything seems to be getting so much better! I cannot believe it and am so very thankful. As I also mentioned, the knee and back pain that has at times made me basically immobile is also drastically improved. I can only assume that I definitely had DH but will never know for sure. I am not willing to take even a bite and go back to where I was just to get a diagnosis. I think instead I will ask my GP for a referral to a dietitian just to help ensure I get the vitamins and minerals I need while cutting out the gluten. 

[hipretty]

On 8/28/2020 at 9:42 AM, kpool said:

Yes, very painful. Sorry for the grossness, but I attached pics of my scalp and the blisters on my finger when the skin rash was happening. If anyone has dealt with DH and/or folliculitis like this, please advise. I had to tell my GP I think its DH and took myself off gluten. Some changes have been miraculous so I can only assume gluten is at least a contributor. 

OMG Wow kpool!!! 😭 I always thought folliculitis was more like white heads...you have full on blisters. Blisters have a very different component than whiteheads. Not a doctor but these pics are stirring up all kinds of red flags of DH to me. 

 

Thank you for your kindness!  💗🙏🌺

I get it that you have no desire to ingest gluten right now, the pain is very fresh in your mind and very real 🥺 But you need to understand that if you do remain gluten free, you may never get the correct diagnosis. If that is OK with you to operate "as if" you are Celiac / Gluten Sensitive / DH and you can stick with that without getting the Dx, I hope you have continued healing and resolution with the gluten-free diet. 💗🙏🌺

Love & Light,

Tee

[knitty kitty]

Kpool, 

Were you out in the sun without a hat before you noticed the scalp blisters?

Curiosity....

Knitty Kitty

On 8/28/2020 at 8:42 AM, kpool said:

Yes, very painful. Sorry for the grossness, but I attached pics of my scalp and the blisters on my finger when the skin rash was happening. If anyone has dealt with DH and/or folliculitis like this, please advise. I had to tell my GP I think its DH and took myself off gluten. Some changes have been miraculous so I can only assume gluten is at least a contributor.