I have a weird blistering disease, how can I identify triggers?
December 6, 2017 9:30 AM   Subscribe

I am too young (36) to have an autoimmune blistering disease but it seems I do- and it's been mild over the years but I'm having a flare up and I'd like it to stop, hopefully forever. What should I do to figure out what changes I need to make?

For a start I'm wondering about elimination diets or supplements but I don't know where to start. Certainly I have anxiety and I'm afraid that stressful experiences are triggering this, blisters occur on my legs mostly but also recently on my breast (for example my latest flare has been worse than previous and started when I was feeling a lot of pain- eventually I had my appendix removed but the blisters started before any medications were taken so I think it was the stress of the pain) and the previous times have also been during times of emotional upset. But that being said, I've had years long breaks between blisters that have included stressful times but haven't had a flare- so I just feel stuck. I'm afraid these blisters will start coming more often and they take weeks to heal. Any advice would be welcome. I have access to excellent healthcare and am seeing a dermatologist but up to now he has been baffled why I have this since I am so young, but not worried since it's been so mild and occasional. I'm greatful for any answers and advice! I have 2 very small children in a foreign country but have done everything I can think of to reduce stress- I have support with childcare, help cleaning the house every couple of weeks, my husband is amazing and my best friend. But still I just don't feel well and I wonder also if the "not wellness" is coming more from the inside autoimmune stuff than the actual circumstances of my life, which is fine. Maybe that's not relevant but trying to paint a picture of the situation.
posted by catspajammies to Health & Fitness (12 answers total)
FWIW, I have a non-blistering autoimmune disease at 33 years old. I take immune suppressants and a sulfa drug with good results. Stress is definitely my biggest trigger. Weather changes are also a big trigger, which has been real fun with our general trend of wack-ass weather. Diet is less so, but I have stopped with high-lactose things with some success.

I haven't been the best about self-care in the past but when I'm doing yoga and/or meditation at home and seeing a therapist regularly, plus taking my meds, it helps a lot even when my life is stressful and chaotic. I've also gotten more into my skincare routine, which may or may not be an option for you. It's great to hear that you have excellent support. Housecleaners are saving my soul lately, for real. Feel free to PM me if you'd like to chat.
posted by ancient star at 9:41 AM on December 6, 2017 [2 favorites]

You are not to young to have a blistering auto-immune disease. I've had a chronic disease since I was 30 that is mostly symptomatic in people much older.
posted by DarlingBri at 9:47 AM on December 6, 2017 [4 favorites]

I think you need a new doctor who isn’t baffled by your condition.
posted by PorcineWithMe at 10:39 AM on December 6, 2017 [6 favorites]

Yeah I'm another 30 something with an autoimmune condition that causes blisters, rashes, and other assorted skin problems during flares. I personally have found that eliminating gluten helped with my skin-related symptoms immensely. When I reintroduce gluten, the skin symptoms recur. YMMV.
posted by somanyamys at 10:58 AM on December 6, 2017 [1 favorite]

Sorry, I really want answers about how people have identified triggers or dealt with managing something like this. To clarify: I know I am not too young to have this problem, it was a turn of phrase... but it's also the reason there isn't any info about the disease online in someone even remotely close to my age- and my dermatologist isn't baffled by the disease, that was also my way of saying, again, it's very rare and he doesn't know at this point why I personally would have it- I don't think that means he's a bad doctor. But I can find a new one if I wish and will consider it.
posted by catspajammies at 11:03 AM on December 6, 2017

Ohhh!! I have so much to say about this, but I am on my phone so please memail me. I just went through my first flare with autoimmunity, over the summer. It was so awful! I started working with a functional doctor in the USA, who really considers your body as a whole and immune system and health history, as opposed to just your symptoms and diagnosis, as most traditional MDs often do. 3 months later I feel like I am almost completely in remission, and my health is better than ever. It's very hard to go through this, I feel for you. I thought I was going to have to live a life managing symptoms, but I am confident now my immune system was just really confused and autoimmunity CAN in fact be healed- if not completely than significantly. But you have to find someone who can help find your root cause; otherwise you are circling the wagon.

One of the first things my doctor told me, is it is not uncommon for women to develop autoimmunity after having children, because their bodies have been through significant changes.

Elimination diets seem to help, a bit. I went on a fairly strict autoimmune paleo diet for some time, and am now more back to mostly gluten-free with low dairy, which seems to be working well. You may find an elimination diet is enough to reset your body. It was not enough for me, but it turns out I just needed the right kinds of things to balance my body out, and I'm amazed at how my body responded.

I was also someone who suffered from depression and anxiety- turns out it was also related to autoimmunity- when that got it check, my emotional turbulence settled down as well.
posted by Rocket26 at 11:12 AM on December 6, 2017 [2 favorites]

You could keep a food and symptom diary. If there are any foods you suspect, eliminate them for a few weeks and then reintroduce them and take notes on what happens.

Having an autoimmune disease flare can definitely make you feel unwell! And feeling unwell can make you feel depressed or more anxious.

Have you been tested for dermatitis herpetiformis?
posted by purple_bird at 11:30 AM on December 6, 2017 [1 favorite]

I would go to a few more doctors. Maybe someone who specializes in autoimmune diseases?

You might get some hints about what specific disease you have by getting a DNA test from 23&Me and then running that data through Promethease.
posted by gregr at 12:19 PM on December 6, 2017 [2 favorites]

Not to dis dematologists but I'd suggest a healthcare practitioner who specialises in auto-immune, rather than in treating the symptoms of auto-immune. IE, I'd want to be seeing an immunologist.
posted by DarlingBri at 12:49 PM on December 6, 2017 [1 favorite]

Oh yeah, and get thee to a rheumatologist! (Not an immunologist; they do something else).

On the off chance you're in Philadelphia, memail me! I can recommend someone.

Also: I'm skeptical of the whole gluten-free for non-Celiac Disease thing. I'm on board with the "it's probably actually Fructan" crew, because the whole FODMAPs diet is extremely, extremely well-documented. YMMV.

Whatever you do, make sure you are eating well, and that's not often compatible with completely cutting out "gluten" from your diet.
posted by ancient star at 1:11 PM on December 6, 2017 [7 favorites]

Have you ruled out shingles? I had a mysterious blistering on my ear that came and went sometimes during stressful periods, starting when I was 12 years old. Of course, I was too young for shingles. But that's what it was. Now I take an antiviral when I get a flare-up and it's gone in a couple days
posted by ananci at 1:17 PM on December 6, 2017 [1 favorite]

I have herpes simplex/ cold sores, only worse than cold sores and always near my mouth, but not only on the lips. Having a virus is the biggest trigger. I get a bad cold, I'll probably get cold sores afterwards. Being tired, really stressed, and cold weather are also triggers. Abbreva helps a lot.

I also have an autoimmune disorder characterized by inflammation. As far as I can tell, dairy aggravates it. I stopped eating dairy when I figured out I'm lactose-intolerant, and when I lapse and eat dairy, it seems to cause a flare. I get flares even when I don't eat dairy, and identifying food sensitivities is non-trivial, but dairy is not at all essential.
posted by theora55 at 5:38 PM on December 6, 2017

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