All It is too much of a coincidence for me to ignore. I have just seen two patients whose combined 6 attacks of SCLS (severe ones) occurred after eating steak at Texas Road House. It is a possibility that a common food additive or processing might be the cause. Has anyone noticed attacks after eating beef at Texas Road House or similar restaurants. Has anyone noticed attacks after foods with an odd taste. I am thinking there might be common factors, processing, additives involved. Dr Phil Greipp PS A common thread to look for might be enzymes used in aging steaks 'naturally' as listed in this paper about enzymes in aged steak. I realize it might seem like I am going out on a limb here and this could all lead nowhere but I thought it worth asking. http://tinyurl.com/lbtwkl

My first attack occured after eating at Rosa Mexicana on a Friday in 2005. I felt somthing hit me just as I left the resturaunt, I thought it was a cold. I felt bad all weekend and went into the hospital that next Monday with my first attack that kept me in the hospital for a month.

Did you eat beef. Might it have been aged or tenderized with enzymes? Dr G

It was 2005 but I'm sure I did. usually order beef of some kind. I'm not sure of the chains beef handling practices though.

Dear Dr. Griepp, I do recall eating at a Vietnamese restaurant prior to my first SCLS episode in 2003. I got sick within 24 hours. I didn't have any beef and the restaurant closed two years later. Also, the last time I had a small episode after eating something that didn't agree with me. There does seem to be a connection between food and the episodes. I am going to NIH this Sunday to participate in the SCLS study. Thanks again for all your help! Best, Allen

I know that Glenn ate aged beef. He liked rare and used to talk about eating beef from somewhere that was so old it was going to mold and turn colors...not sure how much of that was a joke but for sure, filets were his thing. His landlord, when he first got sick, used to order Ohmaha steaks off the internet. We were also starting to look into food being an instigator for his attacks as part of wondering what was consistent in the onset. I can not say if he ate this just before his first attack but I would say it is very possible.

Hi Everyone, I just updated the link to a "Tiny URL" link on the first post to fix the formatting issue. This is a known issue and we're working to fix it for future posts, but in the meantime, feel free to use http://tinyurl.com/ to transform long URLs into shorter ones. Best regards, David

Dr Greipp, I saw in a post that you are seeing a new patient every two weeks...just wondering if they are adding evidence to the beef coincidence?

Dans mon cas, c'est impossible, je suis végétarienne depuis 13 ans.

Josee, Glenn was eating meat but he was also drinking protein drinks with enzymes for muscle building because he was working out at time. Some others on here also have talked about being very fit when they were first ill. What was your fitness level and have you had these protein drinks or powder? I have a little french...not much, but enough to read your response.

Bonjour Jordan, non, je n'ai jamais pris de protéine en poudre. bonne chance dans tes recherches Josée

To jordansh So far no additional patients whose attacks followed eating aged beef or other enzyme containing foods. Hard to know what this meant. Phil Greipp

Jordansh Your comment made me realize that I had missed a variable in discussions with my Doctor and Dr. Greipp. In the 2 years prior to my first incident, I had been working out with weights, biking and other cardio workouts. I was in the best shape of my life and seemed to be what saved my life the first time. I had been drinking protein drinks after each workout. Whey protein drinks is what I used. I had reduced body fat from 21% to about 12% at the time of the incident. I never mentioned it because there are millions doing the same thing.

Walt, It's interesting that you were taking whey protein since I was doing the same and was also in what I would consider the best shape of my life just before I got sick. In fact they wondered if I was on steriods which I was not when I went into the hospital. I wonder if there's a connection to too much protein or certain types of protein as a trigger for an episode. Enjoy the rest of your summer and stay healthy! Allen

When Glenn was first ill they also told him that his fitness level was a help to his survival. He was not taking steroids, only the muscle building shakes but he was in great shape leg pressing 1000 lbs and benching about 350. He was working out everyday and building our house. I am not sure of the brand but am pretty sure it was also with whey protien... so that makes 3 of us, hummm

The protein is a curious point - I was working out (aerobic & weights) & eating the protein bars, and physically in the best shape I have ever been. This was about 7 years ago, my scls began about 2 years ago -

Dr Phil Greipp - I don't have much knowledge of Capillary Leak Syndrome. Are you asking if an increase in serum protein concentration could be related to a symptom that is caused by the the inability of the capillaries to withstand the osmotic gradient between the serum and the body? Unless there is something targeting the capillaries, which it hasn't sounded to me like there is, chances are that it isn't just one protein, but a variety of proteins in high concentration. It's not just meat, but meat, bread gluten, and milk casein - for example. At those steak places there isn't just steak, but unlimited bread and butter and cheese and burnt vegetables (maybe it's burnt food!) and those wacky potatoes. And they are all very salty. A more effective and scientific approach might be to ask people for stories about coming down with symptoms. Were they in or out? On routine or off? What were they eating? What were they doing? Good luck, Michael Fox

Michael I thought the scientific approach was to run a spreadsheet on the group of us and just ask random questions. There has to be a common cause why a samll group of so few people, such as ours, have this syndrome out of so many trillions of people in the world. A syndrome that really goes unnoticed by friends and family because we look somewhat normal. I have told friends, who I have not seen for years, about what the CLS is. They are very surprised because I look normal to anyone. I think we are just unlucky to have something so rare and so hard to pin point. Several of us say we went on cruises right before thier incident. Several came forward with the restaurants right before as well as the protein drinks and in the best shape of our lives right before. There are still millions who did the same thing as us. They are just fine. This CLS thing seems to be a mystery at best. We don't even take the same medicine or take the same treatments when we do leak. I personally think that the NIH is our best shot. We can all go in and be tested and tested and tested. Hopefully they find the common trigger(s). One question to all: Please see new topic named "CLS history of individuals".

I personally know that it is a build up of dairy proteins that sets me off - I was fine when I had 2-3 yrs without any after having an intolerance blood test. I recently had another attack after recommencing eating dairy protein and increasing the amount I ate over the last year. The way it seems to work is that if I allow the dairy proteins to build up in my system then eventually even a small amount will set me off - bit like the last drop of water in a rainbutt syndrome which creates a major overflow. The blood tests showed I had an intolerance to dairy and soya protein - which increases the level of immunoglobulin G in my blood. The nutritionist suggested I went completely dairy protein free for a least a year then re introduce - I cut it out comepletely and I was fine then decided to re introduce about a year ago and now back to square one. The issue I have is that each attack seems to damage my muscles more - I have very stiff muscles in my arms and legs and have trouble excercising and walking - excercise does not help and I do worry about my heart muscle becoming stiffened - I do suffer more as I get older with swollen ankles and legs (I am not overweight) I would like to point out that when I was younger I was an althlete with what I thought was a healthy diet - However I always disliked milk from being a very small child and suffered a few unexplained issues when I was young like itchy hives on my legs and sinus problems. The nutrition material I now read suggest that dairy protein increases mucous in our systems and maybe these early symptoms were a warning to me.

All I have another patient who has attacks in relation to exposure not to tenderized beef or tenderizer but he has attacks almost every weekend and the only correlate is that he raises succulents, cacti, and mostly on the weekends. Cacti are rich in the very same compounds used in beef tenderizer including bromelains. Allergic reactions have been described to bromelains. Hopefully we will find a solution or we will see if stopping the exposure limits the attacks. Phil

Could the correlation to bromeliads actually be due to the blood thinning effect they have? I have extreme sensitivity to ANYTHING blood thinning, anti inflammatory (from ginger, aspirin, beetroot, watermelon all the way to SSRIs (due to the increase in serum seratonin))

Very interesting to revive this thread from 2009. I'd never read anything about enzymes. I can only add that in one of the comments, they mention having seizures after cruises, and coincidentally, or not, my second major seizure was on a cruise. I eat a lot of meat, but meat aging is practically not used in Argentina.

The one thing I remember from Dr. Druey's research was that he found SCLS patients had something different about the way our bodies react (or produce?) to histamines. I asked google if enzymes cause histamine reactions, and here's the synopsis of the rabbit trail I went down:  Enzymes don't directly cause histamine reactions. Enzymes break down histamines and regulate their levels in the body, especially the enzyme diamine oxidase (DAO), which particularly breaks down histamine you eat in food. Histamine intolerance often arises If DAO is deficient. This can create a buildup of histamine, triggering symptoms. The body's levels of DAO tend to drop when people hit middle age, which is also when many people get their first SCLS attack. 
There are a lot of foods high in histamines, including cured, packaged meats (salami, sausage, deli meats, bacon), cheese, beans, fermented foods (sauerkraut, kefir, kim chee, etc.), citrus fruit, pineapple, papaya, tomatoes, potatoes, spinach, etc, etc. And lastly, there's the unverified theory that foods high in lectins cause autoimmune disorders. Lectins can activate mast cells, which are immune cells that release histamine and other inflammatory mediators.  All these little facts do not add up to proof of anything, and I am not pretending I understand biochemistry. I just offer this hoping that someone smarter than me will pick up the trail and be able to say if there is anything here worth serious study. If I ever lose access to IViG, I will probably want to eat a very limited diet of foods that don't have lots of histamines or lectins. There is also a supplement for sale online (Lectin Sheild) that helps the body process lectins. This might be junk medicine, but diet and supplements are the only ways I know to have direct input into my own biochemistry, and I don't have any other clues to go on. 
Thanks for bringing up this interesting topic :)
Cathy
 

Hi y'all!, 

I’ve noticed symptoms when I consume foods containing penicillin-like compounds, such as Brie and blue cheese, antibiotics like amoxicillin and all penicillins, and when I consume kefir, kimchee, matcha, and green tea, as well as aspirin, and certain raw nuts (hazelnuts, almonds, walnuts, peanuts). I also react to shellfish and shrimps, although interestingly I can sometimes tolerate them when they’re fried or tempura, possibly due to molecular changes during cooking or coating.

Beyond foods, I’ve also had reactions to fenugreek, castor oil, bleach, and strong perfumes. Another possible trigger I’ve noticed is MSG, especially when combined with compounds like bromine/bromelains, which are often used in meat tenderizers. That mix in particular seems to line up with times I’ve felt triggered the most.

It makes me think that both the biochemical properties of these substances and the way they interact or are modified (by cooking, processing, or combination) could play a big role in setting off symptoms.

Val