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brandiecane

Member Since 17 Jan 2013
Offline Last Active Jan 26 2013 06:21 PM
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Posts I've Made

In Topic: Anyone Have Dh Flare Up From Tylenol Pm?!

19 January 2013 - 07:36 PM

http://www.curecelia...erpetiformis-dh

"Does chlorine cause a reaction for those with celiac disease, especially those with dermatitis herpetiformis (DH)?
No such link between the two has been researched or reported."


I found this same website FAQ when I was doing my research. I have found several other DH sufferer comments on forums about highly chlorinated pools triggering a DH outbreak. Personally, I have tested this theory twice and both times it was very apparent that chlorine without a doubt causes a flare up. Although, there isn't any peer reviewed reseach on the subject, the only evidence is personal testimonies.

In Topic: Shampoos Detergents And Soap

18 January 2013 - 03:01 PM

Whew, this is quite a debate on here about using gluten-free skin products! I can absolutely ONLY use gluten-free lotions. If not, it's a nightmare. Knowing that makes me use gluten-free body wash just to be safe. I'm probably being overly paranoid but holy smokes it is so worth it in order to avoid a flare up! I get gluten-free body care products from Whole Foods. I buy the "√čveryone" brand (it's cheap and lasts a long time). I just use regular shampoos and other stuff though without any problems.

Random, but one thing I have tried lately that REALLY soothes the itchies is straight organic Coconut Oil. I'm sure everyone on here already knows that but I'm a newbie and no DH peeps ever told me to try coconut oil so I want to pass that along in hopes I can help someone out! Also, I add apple cider vinegar to my bath when I sense a flare up coming on. It helps too :)

Brandiecane

In Topic: Anyone Have Dh Flare Up From Tylenol Pm?!

18 January 2013 - 02:46 PM

Just saw your post on the photo bank. As far as chlorine goes I couldn't say. We have city water right now & so I'm getting chlorinated but I have not been in a pool or hot tub. I also haven't been showering in anything but city water so have no comparison to non chlorinated water. Interesting thought though.


Thanks for replying! I stopped taking the Tylenol PM. I'm definitely going to ask about something else to help me sleep. I stumbled on the chlorine info a while back. The research said that heavily chlorinated pools can cause DH flare ups- and is sometimes linked to causing the onset DH symptoms. I thought this was very interesting bc DH first presented itself when I was 25 after a long day at the pool. I went first thing in the morning to get some sun and I remember thinking the pool had just been treated bc the chlorine smell was very strong. Later that day I had my first DH outbreak. Of course I was misdiagnosed for two freakin' years but finally I have it mostly under control. That summer was when I started drinking beer too. Prior to that I only drank wine and girly drinks. I often wonder if the increase of gluten from the beer was also a culprit. I never had any other indications that gluten was a problem for me. I've been Gluten-Free now for over a year. I hate that I can't ever be completely cured. It's really frustrating. Anyway, I've tried the chlorine theory twice and both times I had a flare up :/ One more thing I have to avoid.
It is so great to be on this forum and read other people's stories and struggles of the same condition. I haven't met anyone with DH and I find that explaining it to people is useless bc no one can relate.

In Topic: DH Photo Bank

17 January 2013 - 02:33 PM

These first 4 are from Sept. 2011 when I was on the verge of discovering this was dh.
http://rainytown.se/...si/DSC00864.JPG
http://rainytown.se/...si/DSC00866.JPG
http://rainytown.se/...si/DSC00868.JPG
http://rainytown.se/...si/DSC00867.JPG This 1 shows the clear amber fluid. The blisters were coming up so fast & bursting all by themselves.
The following ones are after 6 months gluten free & several months low salicylate & not a lot of iodine but I had been doing so well that I couldn't resist eating 4 tsp. of strawberry banana yogurt & during the night I woke itchin like mad & my neck all broken out in dh. Then other places began to break out again.
http://rainytown.se/...si/DSC02919.JPG
http://rainytown.se/...si/DSC02922.JPG
http://rainytown.se/...si/DSC02923.JPG
http://rainytown.se/...si/DSC02926.JPG
http://rainytown.se/...si/DSC02927.JPG
http://rainytown.se/...si/DSC02929.JPG Shows the scars on the back of my leg from earlier.
http://rainytown.se/...si/DSC02930.JPG Other leg. Scars will fade away after about 5 months.
http://rainytown.se/...si/DSC02938.JPG
http://rainytown.se/...si/DSC02940.JPG Blister on lower abdomen - just formed.
http://rainytown.se/...si/DSC02945.JPG Brand new blister in crook of arm.
http://rainytown.se/...si/DSC02967.JPG
http://rainytown.se/...si/DSC02969.JPG
http://rainytown.se/...si/DSC02980.JPG
http://rainytown.se/...si/DSC02981.JPG

I have been adamant NOT to scratch! None of the lesions or scars are the result of scratching them. It's bad enough w/o making bad scars from scratching them. I will scratch around them but never on them. I will rub on them and press on them.
The only place I have not had them yet was on the soles of my feet. I get them horribly in my scalp & they tend to be very large there --- the size of a quarter. They look different than these photos but there is no way to seperate the hair well enough to get a good clear photo. In the scalp they generally take 6 weeks to heal. All others run a course of 2 to 4/5 weeks depending on if I was gluten free or got cc'd (only once) & if I got too much iodine or salicylates.



Oh my goodnees, I am so thankful you posted this. That is exactly how mine looked before I went gluten-free. I struggled with DH for so long before I finally went gluten-free and saw results. I was misdiagnosed several times by multiple doctors and I wish I would have seen this forum months ago! Do you notice any flare ups from Chlorine or Tylenol? I got in a chlorine pool this summer and had a terrible flare up. I even had to get a chlorine filter on my shower head. Lately, I have been taking Tylenol PM and am experiencing a flare up. That's the only thing I can really think of that would cause a flare up. Have you experienced exacerbations from Tylenol?

In Topic: Pictures Of Mine

17 January 2013 - 02:12 PM

That's kinda how mine looks but only if I have a minor flare up. In my experience, DH is most easily identified by the way it feels. It is so insanely uncomfortable- pure torture- literally makes you consider suicide when it is undiagnosed for SO long. When I finally decided to go gluten free it took several weeks to see a huge improvement and about 6 months to completely "heal". I still get flare ups here and there, likely from cross contamination, but gluten free is the only cure (in my experience). Try to stick it out for longer than a month and be super super strict. Going gluten free can help with TONS of different skin conditions anyway so it is worth it to try.