Tuesday, September 22, 2015

Keep that shiitake away from me!

What a week. Last week at this time, I was heading out to meet a friend for a late breakfast. I had an errand to run before we met at 11. At 10:24, I received a text from her that she wasn't coming. I was not a happy camper. Over the last 40 years since we've been friends, she's done this to me more times than I can count, which is why years will go by without our seeing each other. But I had to be in her neighborhood last Tuesday, so I contacted her on Monday to make arrangements.

Don't you hate when people are unreliable? I sure do. 


Shiitake mushrooms
Rather than going somewhere for breakfast, I decided to go to PF Chang's for a lettuce wrap. Apparently that was a bad decision. Remember my post last week about getting sick from touching the utensils on the salad bar? Well, that may be the reason I started out with a sore throat on Tuesday, but it's certainly not the reason why I had an emergency situation with my asthma. Nope. My breathing problems stemmed from under cooked shiitake mushrooms in the lettuce wrap. Since I am asthmatic, I assumed it was asthma. But I was wrong. And I could have died. As I struggled to receive relief by using an inhaler that had expired over a year ago, I kept having visions of scenes from The Hand That Rocks the Cradle. If you've seen the movie, you know what I'm talking about. I haven't needed my inhaler in years, which is why I didn't realize it had expired.

It wasn't until Thursday that I connected the dots regarding the shiitake mushrooms. That's the day the RASH appeared. It's not just any old rash... it's a shiitake mushroom rash and it's nasty. I had it before (last October), so I knew what it was as soon as it appeared. I look like I've been attacked by a wild animal or flogged by an angry mob. Here's a picture of someone else with the exact same shiitake mushroom rash:


Man with shiitake mushroom rash


Yeah. That. All over my body. Fun times.

But I don't want this to be a "poor me" blog post. I'm writing it to educate you. The thing is, I am not allergic to shiitake mushrooms. I've eaten them many times without any kind of reaction. However, if they are not cooked thoroughly, they can be toxic. The rash is my body's reaction to the toxin lentinan, which decomposes when heated. But if it's not heated well enough, the decomposition is incomplete. Thus the reaction. 

In this case, unlike the previous one, I first experienced a closing of my airwaves. Two days later, the rash appeared, which can happen anywhere from one to three days after eating the under cooked mushrooms. The flagellate dermatitis was the telltale sign that let me know what was really happening. 

Last year, as soon as the dermatologist took one look at me, he asked, "Have you eaten any strange mushrooms lately." He knew right away it was a shiitake mushroom rash. 

Unlike an allergic reaction, this toxic reaction occurs when the lentinan causes dilation of the blood vessels which in turn leak small amounts of inflammatory compounds just beneath the skin. It's not intensely itchy, so the marks are not caused by scratching. I find the itch mildly irritating, but it's nothing that's driving me crazy on a minute-to-minute basis. But it is ugly. 

The rash on my arms is not whip-like. Rather, there are just raised red bumps everywhere. Without touching it, someone might just suspect sunburn, but running your fingers along it reveals a different story. Treatment involves an expensive steroid cream that, by absorbing into my system through my skin, causes my blood glucose levels to rise rather dramatically. Lovely.

Lessons learned and lesson shared: Avoid under cooked shiitake mushrooms. In my case, I'll be avoiding them altogether. When in restaurants (particularly Asian restaurants), ASK. 

Just think, had my friend met me for breakfast last Tuesday, this post would never have been written. Perhaps it just might save one of you from experiencing the nasty shiitake mushroom rash I'll be living with for another week or so.



20 comments:

  1. I too just came down with this same rash a few days ago. My Dr. had no idea what it was and just suggested Benedryl and gave me a steroid cream neither of which has really done anything. The only rash I could find that looked similar was this one. I couldn't recall eating any shiitake mushrooms, but then I saw similar comments regarding PF Chang's. I ate there two days before the rash appeared! Thank you so much for posting. I wonder if this is actually super rare or if perhaps people don't make the connection when it happens because there isn't a lot of info? From what I understand, it usually takes about 10 days or so to leave the system. I also have swelling in my hands and sensitivity. I'm trying to decide if I should ride it out or see a dermatologist (very expensive with my current coverage). I know this is an older post, but if anyone reads this and could provide any other info/ advice it would be much appreciated.

    I ate at a PF Chang's in downtown Seattle and the rash began on the back of my neck about two days later. A few hours later it appeared on my back like long scratches down my spine and then horizontal scratches all across the back. I also have patches on my legs and arms and the back of my hands with some swelling and sensitivity. In some places I am also covered in a kind of a pinprick looking rash. Hope this might be helpful for others in their research. Looking at 100s of pictures of rashes on the internet is a pretty terrifying way to spend an evening... ;-)

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    1. You're the second person who responded to this in the past week (the other one emailed me). Lettuce wraps at PF Chang's was cited there, too. It's really scary. And it's disturbing to me that they did not respond to my email about the problem. Have you tried contacting them?

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  2. Hi There, I have the same thing. I ate at PF Changs in Scottsdale on Sunday. I had the lettuce wrap and the Buddha Feast--both of which contain shiitake mushrooms. My rash looks exactly like the picture in your blog and have the mini-blister like rash all over as well. It started on Tuesday night--almost exactly 48 hours later. Thanks for your post, it makes me think this is not as rare as reported.

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    1. That is so disturbing! The fact that they wouldn't even respond to my email really upsets me as well. I won't ever eat there again. I hope your rash fades quickly!

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  3. Ive got it too. Ate raw and cooked shittake mushrooms yesterday and sat in the sun today. I've had it before but couldn't pin it down. Now that I've found this blog I can backtrack and remember eating mushroom stroganoff in a pub before the last outburst. Gotta be the mushrooms.

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    1. I'm sorry you suffered through this, too. It's really awful. At least we know the culprit. Thanks for taking the time to share your story.

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  4. I have it too. I ate the mushrooms in a salad two days before New Years. New Years morning I woke up with a red rash across the back of my neck. Today I am covered from neck to lower legs with stripes, blisters and pin pricks. It's extremely itchy and painful rather like poison oak or summac. Nothing helps the intense itching. My neck is covered in blisters. I can't wear anything at all but a large cotton robe. At least Benadryl puts me to sleep and I can escape for a couple of hours. The public should be made aware of this so research can be done to find a way to alleviate cases like mine.

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  5. That sounds awful! I had to use steroid cream from the dermatologist to treat my rash. It might be worth a visit for you. You could also try apis melifica, which works for other kinds of rashes for me. I use the Hyland's brand. Good luck!

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  6. It has been 5 days and the rash is still spreading. Urgent care out me on Metrol 4m but because this is not caused by anybody it's doing nothing. I am miserable.

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  7. I'm so sorry both for what you're going through and my delayed response. Are you better now?

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  8. I just found out that I am also having a reaction. Although I did not eat from PF I got it from my Graze box! They had a Chinese Shiitake broth tray. I had NO idea you could get this from under cooked shiitakes. Two days later I got the same rash everybody else has experienced. I was prescribed steroids. The rash is HORRIBLE. The itching alone is driving me crazy. I'm sending my husband to get antihistamine and cortisone cream to help with the itchiness. In the mean time I've been taking oatmeal baths. Thank you SO much for this post!!

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    1. That's horrible, Jenisa! I'm glad the post gave you some answers. Now I just hope you can get some relief SOON! Take care. GG

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  9. My wife and I have had a reaction on 2 different occasions after visiting PF Changs in louisville, ky. The first time we joked it must have been something we ate. This was in 2015. We went back on 1-21-17 and 2 days later we both broke out bad. It is continuing to get worse today day 4. We traced it back to their lettuce wraps. Someone has to get this out to others. This is terrible and from what I've read. It comes from undercooked shiitake mushrooms. They should be responsible for medical bills. It seams like it is not as rare as people say. People have tried to reach out to them and have not made any progress. If they cannot cook them right they shouldn't be on the menu. Food there is excellent, but we will not be going back after this.

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  10. It really is awful. PF Chang's didn't even have the courtesy to respond to my email. Please share this post so we can get the word out.

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  11. Well, I've got the same problem! I can pin point it to having lettuce wraps at Pei Wei which is actually owned by PF Changs. My reaction was a bit slower however. I ate there last Wednesday and the rash appeared Sunday morning. It is getting better in some spots but spreading in others. I happened to have an appointment with my cardiologist yesterday so I had him write me a prescription for Medpro steroid pills. He hadn't seen this rash before so I'm hoping he gave me the right stuff. Not super itchy but the claw marks are VERY pronounced. Good to know the cause though. Thank you for this post!

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    1. Thank you for taking the time to comment about your experience. It's sad that PF Chang's is indifferent to the problem. I hope you heal quickly.

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  12. I just found out I've got the same thing. I bought some gourmet mushrooms at my local Meijer store and broke them up in my salad and I've been eating them since Friday the 10th up until Monday the 13th. I went to the ambulatory care since I was breaking out and couldn't breathe. They gave me an epinephrine shot and sent me home with prednisone. Well a few things happened on Friday. I ate the salad, we rescued a dog from the pound and psychical therapy put kensio tape on my forearm and bicep due to my rotator cuff surgery. The ambulatory care thought it was the latex in the tape or the new dog. Sunday I went to the er at my local hospital and they gave me more steroids and pepcid. No one could figure it out. Wednesday is went back to the ambulatory care since I wasn't getting betteready and the welts were getting worse. They referred me to a dermatologist and took pictures. The dermatologist the next day said I had geographic dermatitis and gave me a shot of antihistamines and sent me home with 2 different kinds to take during the day and one at night. They helped the itching but my body was still all welts and rash. I was sleeping all day due to the high level of antihistamines so I missed the call from my local ambulatory care on Thursday saying they might of found the cause. It's Saturday now and I just called them back anext hour ago. They asked if I had eaten any Shitake Mushrooms and was surprised to find I did. I tried to get ahold of my dermatologist but the office is closed. They will have to wait until Monday. I feel there needs to be more awareness. I've spent thousands now trying to figure out what's wrong with me. Thank God for the nurse who called in and the nurse who came in for her or else I'd of probably never of known.

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    1. That's horrible, Kerri! I'm glad they finally have answers for you. You're right, we do need to spread awareness. Feel free to share this post across your social media sites. And best wishes for a speedy and complete recovery.

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    2. Just ate at PF Chang's in Indianapolis Sat 3/25, had the lettuce wraps - my daughter and I who are also both Celiac have had the severe rash, sore throat and now canker sores. Husband who ate the same thing has had no reaction. Benedryl and steroid creme not really helping. What is best for toxic food exposures? thx

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  13. I can't believe how many similar stories are out there. And PF Chang's does not care. I wish I had an answer to your question, but I really don't know. I had to use steroid creme for my rash. For other hives, etc. I use Hyland's Hive Tablets. I'm sorry I can't offer more help.

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