MC remission but now skin rash?!

[Zizzle]

I've been doing great with respect to the MC. Near-normans or normans once a day, no digestive upset so long as I avoid gluten. I'm even eating salads and unpeeled apples on a regular basis. Coffee a couple of times a week is also tolerated well. I believe my remission began when I discovered my sesame intolerance, but who knows.

What has me concerned is a skin rash on my neck and upper back that has been smoldering since December. It's itchy, but I can control my scratching much of the time, so it's not intensely itchy. I thought it was triggered by a nickel-containing jewelry clasp, but I haven't worn necklaces in weeks and my rash is getting worse. It's spread to my shoulders and upper chest. I even think I'm developing a mild malar rash on my face. I had a similar rash on my hips and lower back 7 years ago after the birth of my first child. No steroid creams or topical treatments help. This was what started my whole autoimmune journey...

Needless to say, I've been researching rashes for the last 7 years, so I should be an expert. I've narrowed this rash down to 2 possibilities:

1. papular mucinosis/lychen myxedematosus

2. dermatomyositis -- there is often a characteristic "shawl sign" which I have now, a "holster sign" which I had 7 years ago, and "Gottron's papules" on the knuckles, which I seem to have on one hand. My red,abnormal cuticles may also be a sign.

#1 is not great because there is no proven treatment. It's also usually associated with an abnormal paraprotein in the blood liked to possible MGUS and myeloma someday. I'm hoping someone will be willing to test for this paraprotein to rule this out.

#2 is not great, because it could mean eventual, sudden autoimmune muscle breakdown. There also isn't much help for the rash, although recent reports show immune globulin transfusions are helpful -- is that a big deal?

Anyway, I'm wondering whether my MC remission is simply the result of my abnormal "immune complexes" closing up shop in my colon and moving elsewhere to do damage. Is this possible? I feel good and take fish oil and curcumin for anti-inflammatory effects. I'm wondering if cutting down on GF grains and legumes might help? Now that I can do more veggies, at least I wouldn't starve.

I'm seeing my doctor tomorrow -- the one who keeps looking at the rash and saying he doesn't see anything but scratching. He'll definitely see something now - it looks like pink, shiny/waxy goosebumps. If he can't help me, I'll head back to the rheumatologist in my internist's practice. I doubt a dermatologist would have any clue about something truly medical.

I'm so disappointed that relieving my MC didn't automatically cure all my health issues. I figured MC symptoms were a barometer of my overall health. I suppose there's more to me that just my GI tract after all.

[tex]

Zizzle,

Your description, (shiny/waxy goosebumps), sounds a lot like dermatitis herpetiformis. Check these images.

Or these.

If that's not it, think MCAD.

Tex

[MBombardier]

What's MCAD?

I don't do any grains or legumes, Ziz. Also, you might think about high-histamine.

[tex]

MCAD = mast cell activation disorder.

Tex

[Zizzle]

My rash never blisters or crusts like DH, but i suppose it's possible. The rash doesn't come and go either like you'd expect from a mast cell rash. Nothing makes it worse or better. It just has this slow, smoldering course. I just read MGUS may be associated with gluten intolerance, so there may be something there...

[tex]

Since you've been on a GF diet for so long, the odds are pretty high that any blood test or skin biopsy test will be negative for DH, so I don't believe that medical science has a way to diagnose it, in such a situation, (of course, that's not surprising, since they don't have a reliable way to diagnose celiac disease, either, in most cases).

Tex

[tex]

You can do as I did - send a stool sample to EnteroLab, to see if you're producing anti-gliadin antibodies. I'll bet a GF cookie you are, and that will provide pretty strong evidence that the source of the rash is DH.

Tex

[Zizzle]

I saw my doctor yesterday and he finally took note of the rash. I told him my suspicions and he admitted I know "way more about this" than he does. Nice that he would admit that. He pulled out a PDA and looked up some of the terms I mentioned. He said he didn't think it's DH, and dermatomyositis would probably be sudden and severe. So all I have until we know more is a papular, erythemateous rash that blanches, with no vasculitis. He ordered my annual bloodwork (5 months early), to see what's going on with my autoantibodies, SED rate, CBC, metabolic panel, etc. We talked about my upcoming vacation in Florida and he ordered minimal sun exposure, particularly on the rash. He was 100% certain that sun is not my friend and I would be photosensitive.

He also ordered a celiac antibody panel -- which I asked him not to. I was certain it would be negative. It came on a separate form, so I can choose to omit it from my testing. Should I? Isn't it a waste of time and money? It was negative 2 years ago.

Then he proceeded to the Chinese medicine half of the appointment and after looking at my tongue he decided to bleed my ear and do 2 rounds of acupuncture, front and back sides. He poked my outer ear to draw blood and sat there soaking it up for several minutes. This was to address too much "heat" in the body (not temperature heat). The acupuncture needles were placed in all new locations (compared to previous acupuncture sessions for MC and joint pain) from neck to feet. It was surreal. Interestingly, I began to shiver during and after the treatment, and yet my rash was ON FIRE, itchier than ever, and my face was flushed. He said that's what he wanted to to - make it angry, and "open things up".

Of course, today the rash is back to the same, smoldering, nagging itch. Depending on the bloodwork, I'll end up seeing a dermatologist soon, "one that actually practices medicine" (my request). My doc said he knew some of those

I have another acupuncture session in a week. If it manages to cure the rash, I'll be a total convert forever!

[Zizzle]

I should mention that we discussed my theories and anger over the rise of autoimmune diseases in women. He agreed that microbes may play a role, but he sees it this way:

We start off with a set of genetics, in my case, bad ones which predispose me to leaky gut, gluten sensitivity, and autoimmunity.
Our body is only 80% human tissue (I may have the % wrong, it may have been less human tissue). The rest is microbes, so they have a huge impact on everything.
We get infections, be it Epstein Barr, Lyme Disease, and others, and for some reason, some people's bodies shake them off and get rid of them. Other people hang on to them -- this is one major factor doctors are trying to understand. Is it environmental pollutants that make our bodies less able to rid themselves of infections? Genetics?
He also noted that they see more autoimmune disease in higher educated, more affluent people. Do they share genetics, common exposures, stress?

Lots of unanswered questions...

[tex]

Should I? Isn't it a waste of time and money?

Only if you want to humor him. Yes, it's clearly a waste of time and money, if you've been on a GF diet since the last test. If the primitive blood tests couldn't detect any antibodies then, they certainly won't detect any now. An EnteroLab anti-gliadin antibody stool test, though, might provide some interesting insight

He also noted that they see more autoimmune disease in higher educated, more affluent people. Do they share genetics, common exposures, stress?

IMO, that's because of one simple fact - by definition, with a few exceptions, of course, that cohort is not composed of "rednecks". IOW, not only are they less likely to get as much sun as "rednecks", (less vitamin D, so a weaker immune system), but they have forgotten how to relax, the way that "rednecks" do, and so stress tends to eat their lunch, further weakening their immune system, and predisposing them to autoimmune disease.

Tex

[Zizzle]

so stress tends to eat their lunch, further weakening their immune system, and predisposing them to autoimmune disease.

Interesting point, since he also mentioned that traumatic life experiences can also cause or trigger autoimmune disease. He sees a lot of PTSD cases that eventually become autoimmune disease.

[brandy]

Hi Zizzle,

Very interesting thread on relaxation and Vitamin D! I can't add to the mix other to say that I had a rash during flare that did not respond to cortisone cream that has now gone away.
I wanted to thank you very much Zizzle for the tips on uncured bacon and carrots! It is such a treat to have bacon and Tex's fave of potatoes for breakfast now!
Your shopping list is very helpful. Brandy

[jme22]

Zizzle,

Food for thought...

You said:

The rash doesn't come and go either like you'd expect from a mast cell rash. Nothing makes it worse or better.

But when the physician was performing acupuncture it significantly fired up the intensity of the rash; burning, itching, and facial flushing. (All typical mast cell responses.) That sounds a bit more suspicious to me that the rash could be a mast cell related issue given your response to the acupuncture. Friction and physical irritation are known triggers for mast cells. It is for this exact reason that every baseline evaluation for a mast cell disorder begins with the physician using an instrument of some sort (think tongue depressor) to deeply drag across a section of your back or arm to look for dermatographism.

Example: http://www.sciencephoto.com/media/263649/view

I wouldn't completely discount mast cells as a potential culprit. It would be interesting for you to have a 24 hour urine methylhistamine collection performed while you have the rash. That may help tell the story if it is in fact a mast cell issue.

If you are feeling adventuresome here is a lotion that was developed just for mast cell rashes. It's called "magic masto lotion" on the internet. I've never used it as I respond pretty well to Benadryl cream, but I wouldn't hesitate to use it, if a rash got really out of control. Here's a link for info, including the "recipe" and FAQ section:
http://www.mastokids.org/mml.php

As I said at the beginning, just wanted to offer this as food for thought. I'll be interested to hear if the acupuncture helps.

Hope you're rash free very soon!

Julie

[Zizzle]

Thanks Julie,
That's interesting. I've had dermographism all my life, so I know I have the potential for mast cell issues. I tried steroid creams for a week with absolutely no response, but I suppose I should try antihistamines! Duh. I'll start benadryl cream and/or start taking Allegra to see if the reaction improves.

In the meantime I go for my autoimmune bloodwork today. I read more about Dermatomyositis, and I have to say, I'm getting worried and convinced that I have it, hopefully the rash-only "Amyopathic" variety. I read that the rash precedes the muscle attack by 3-6 months in most cases. Here's what I read with pictures that closely resemble the rash on my neck, shoulders, chest, knuckles and nail edges. Mine are less red (mostly pink) compared to to these pictures, but the locations and texture are right on target. Hard to ignore the connection...

http://mulla.pri.ee/Kelley's%20Textbook ... ML/592.htm

[Zizzle]

Julie,
Thank so much for sharing info on Cromolyn! I was totally unaware of it. I plan to buy the nasal spray for my husband and 4 year old to prevent/treat their HORRIBLE tree pollen allergies!! I'm sure they'll take Allegra too, but they need all the help they can get. Might get the eye drops too!