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    Talking to Others About the Gluten-Free Diet by Danna Korn


    Danna Korn
    Image Caption: A chef speaks to customers about their order.

    This article originally appeared in the Autumn 2003 edition of Celiac.com's Journal of Gluten-Sensitivity.


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    Celiac.com 11/19/2010 - “To talk to someone who does not listen is enough to tense the devil.” – Pearl Bailey

    No matter what your reason for your dietary restriction, one of the hardest things about this diet is talking to people about why you must be gluten-free, and trying to explain the diet itself.  Responses range from complete understanding (sorry, this is extremely rare), to people who think they understand but don’t (“Oh, this is just like when I gave up liver for Lent!”), to those who don’t care an iota about your diet, to the other 95 percent of the population who really want to understand, but just don’t get it.

    There is an art to talking to people about your condition and the diet, but first there are a few basic ground rules you should know and follow.

    Attitudes Are Contagious
    When you’re talking with other people about your diet, especially close family members who will be “in this” with you for the rest of your life and who may also someday learn they must go gluten-free, remember that attitudes are contagious.  If you give the impression that this diagnosis has ruined your life, and that the diet is worse than astronaut food, others will feel that way, too.

    First, these things aren’t true, even if it seems that way at first.  Second, you don’t want your husband, wife, or kids to feel this way, especially if they’re the ones on the diet.  Be careful what you say. Even when they appear to be tuned out, kids and spouses hear what you’re saying.  Feelings can be hurt, and lasting impressions can be made.  Portray a positive attitude about the diet if you can; you may even find it rubs off on yourself.

    Everyone’s a Doctor
    Before you begin talking to people about your medical condition, you should know that nearly everyone, regardless of education (or lack thereof), is a doctor.  Especially when it comes to gastrointestinal distress, a subject that nearly everyone on the planet is at least vaguely familiar with.

    Once you get past the squeamish introduction, you’re likely to be cut off by people who want to tell you what you have.  “It’s lactose intolerance,” your best friend assures you.  “No, I think you have all the warning signs of colon cancer,” argues Doctor Dad.  “You just need acupuncture in your butt,” advises your eight-year-old wanna-be doctor son who just learned the word (acupuncture, not butt).

    You may have trouble getting everyone to stop with the advice and listen, but try to get through your dissertation.  Then you can look forward to one of several responses (percentages are based on personal experience, not scientific findings):

    • Complete understanding (0.1%):  These people will listen intently as you discuss villi, bowel movements, gluten, and modified food starch, barely moving a muscle as they hang on your every word, taking careful notes so as not to poison you at your next get-together.  These saints have also been known to hang flyers in their kitchens, listing safe and forbidden foods in case you drop by for an unexpected visit.  Worship the ground these people walk on, because they’re few and far between.
    • Pseudo-understanding (they think they get it but they don’t) (0.9%): These people are easily identifiable, because they nod much too quickly when you explain the situation to them.  Staccato-type nodding of the head is usually accompanied by rapid-fire successive affirmative phrases such as, “Uh-huh, sure, mm-hmm, yep, gotcha, sure, yep, of course, mm-hmm.”  Don’t burst their bubble; these people are used to knowing everything, and usually can’t be told otherwise.  I recommend that you bring your own food to get-togethers with these people.
    • Absolute and unveiled lack of interest and concern (4.0%): Gotta hand it to ’em, these folks are honest.  Don’t try to push a rope.
    • Desire is there, but they just don’t get it (95.0%): These people mean well, but either don’t have the ability or don’t want to take the time to understand.  Don’t be annoyed, offended, or otherwise put off.  Their attitude can’t change the fact that you feel a lot better now that you’ve eliminated wheat or gluten, and that’s what really counts.  Don’t disown them (especially because most of your friends and family will fall into this category), and don’t berate them, either.  Your diet isn’t their concern, even if you think they should care more than they appear to.
    When Those Closest to You Just Don’t Get It
    Obviously, dealing with this last (and vast) category is difficult.  Already you’re saddled with the extra responsibilities and challenges inherent to the diet, and it may not sit well with you that some of the people closest to you are those who put forth the least effort to understand.  We expect family and friends to support us, show concern, offer assistance, and make things that are important to us important to them, yet often it is exactly those people who disappoint us the most.

    In this situation, we have the additional challenge of dealing with the fact that we’re around them frequently, and food is often a part of social situations.  Trusting them to provide foods that are safe, or worse yet, dealing with the anger and resentment when they don’t even bother, can test the most solid of relationships.

    If they just don’t get it because they’re simply not capable, forgive them and move on. Some people are set in their ways, and others are intellectually incapable of grasping the intricacies of the diet.  Be aware and be prepared with your own foods when getting together.

    When loved ones are capable but just don’t want to bother taking the time to learn about the diet and your condition, you may experience feelings of hostility and resentment.  It’s okay to be mad, but don’t wallow in the anger; it serves no purpose, and will provide you no benefit, because they’re not going to change, and you can’t force them to want to care.

    It’s important to avoid falling into the role of the victim.  You may have some serious medical conditions, and you could be getting some sort of reinforcement from feeling victimized, both by the condition and the people around you.  It gets you nowhere, except into a rut of negativity.

    People who just don’t get it aren’t going to suddenly show interest in you, your condition, and the diet. Just as they don’t have to cater to your diet, you don’t need to cater to their insensitivity and thoughtlessness.  Forgive them for their lack of sensitivity, their narcissism, and their indifference (but unless you want to start a family feud, do it in your heart rather than out loud), and move on.  They may be sensitive, generous, caring people in many ways, or maybe they’re not.  In either case, you can’t force them to care or learn about your condition or diet, and as frustrating as it can be, your only choice is to accept that fact.  Don’t allow yourself to get mired in the negativity that their apathy can create, and don’t lower yourself to their level either by caring less about their situations.

    Need-to-Know Rating Criteria
    HIGH: Will these people prepare food for me?  If so, it’s important for them to understand which foods and ingredients are safe and which are forbidden.  If you can narrow it down for them, do so.  For instance, don’t go to a restaurant and ask them what they have that’s wheat or gluten-free and expect to get a good answer.  Instead, peruse the menu, and figure out what looks as though it is safe, or could be made wheat or gluten-free.  Then you can get into the intricacies of cooking procedures, contamination issues, and ingredients.

    Sometimes it’s easiest to explain your condition in terms of an allergy, even if your condition is celiac disease (which is not an allergy).  People understand, for instance, that peanut allergies can be severe, and even a little peanut can cause some people to have a serious reaction.  Sometimes it’s necessary to explain that you have a “severe toxic reaction” to wheat or gluten before people will take your condition seriously.  Otherwise, they may think that it’s okay just to pluck the croutons off the salad after the fact.

    MEDIUM: Are they asking out of curiosity or nosiness?  Most people who ask about your diet do so out of genuine curiosity rather than abject obnoxiousness.  Maybe they have dietary restrictions of their own, and wonder if yours are the same as theirs.  Maybe they’re nutritionists, or maybe they’re just genuinely curious.  In any case, don’t be offended, but don’t feel as though you have to give a dissertation on the advantages of a wheat or gluten-free diet either.  Offer as much information as you’re comfortable giving, and as much as it looks like they’re truly interested in hearing.

    A good response is usually generic at first, adding information as the listeners seem to want it.  “I have a condition that makes me unable to tolerate gluten, so I eat a gluten-free diet” is usually a good start. If they want to know more, they’ll ask.

    LOW: Do they warrant a response?  When the 16-year-old kid wearing a paper cap and taking your order at the drive-up window asks with a strong Valley Girl accent, “Like, what’s wrong with the bun, dude? How come you ordered, like, all your burgers without, like, the bun?” your best response is to bite your tongue.  No response is needed, unless you can muster a good, “Like, what-EVER, dude, I like ’em that way.”

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    Guest Shirley Braden

    Posted

    Outstanding article, Danna! You've told "it" exactly like it is. We need to know who's who, so to speak, so we can handle them in the most effective way that will keep us safe. And, as you so wisely say, we need to move on when that's appropriate. Becoming a victim never works. Eating gluten free is a blessing to so many of us, but feeling that way is not instant, and learning how to cope with others takes some time, too. You've just allowed folks to skip a few steps by sharing your insight--thank you for that! I'll be sharing this with my support group members and on my blog.

     

    Thanks again, Danna. Happy Thanksgiving!

    Shirley

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    In other words, we act like adults, even if other people don't!

    Excellent article. The point about calling it an allergy is a good one. Do what works is my way.....Enjoy the gluten-free pumpkin pie.....I'm taking one to the family dinner and not saying a word about it being different. Let them ask.

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    Guest Vicki Gold

    Posted

    I just started a coaching/consulting business for newly diagnosed celiacs. A 3 session program helping to streamline their gluten free diet. This article will be included in my "welcome" packet.

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    I have been recently diagnosed and this is very helpful. You did however forget a group. Those who think this gluten-free diet stuff is a hoax, a conspiracy or in the least, a passing fad.

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    Guest veronica

    Posted

    Ditto to Shirley Braden rating. This is the first time I came across an article about how to talk to others about your gluten free diet, which we all have to do. I found this subject informing and comforting.

    Thank You, Veronica

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    Guest Roselyn

    Posted

    My friends and family go out of their way to have things that I can eat in their home. But I always ask what is on the menu and if it is something that I can't eat, I'll bring my own little Ham or Sausage Quiches. That has worked out well. More and more restaurants are becoming very aware of the concept of gluten free! Even thought I don't eat out much!!!

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    Guest Weesie

    Posted

    I have been recently diagnosed and this is very helpful. You did however forget a group. Those who think this gluten-free diet stuff is a hoax, a conspiracy or in the least, a passing fad.

    I know! My brother mocks me endlessly about gluten-free being a trend. Says I should see a 'real' doctor. When I went to visit him last time he purposely went out and bought me a french baguette and an assortment of cheeses for me to eat! Really frustrating!

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  • About Me

    Danna Korn is the author of “Living Gluten- Free for Dummies,” “Gluten-Free Cooking for Dummies,” “Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living,” and “Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy Gluten-Free Children.” She is respected as one of the leading authorities on the gluten-free diet and the medical conditions that benefit from it.

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    Danna Korn
    Our story began when our first child, a perfect baby boy, began to get sick. It started benignly enough, with more than just a touch of diarrhea, which the doctors attributed to the antibiotics he was taking for ear infections. When time was up on our allotted four-minute visit, we were told to keep an eye on it and call them if it didnt go away in a couple of weeks.
    What we were supposed to keep an eye on, Im not sure. The piles of diapers that we had to haul out every afternoon? The lovely rhinoceros-skin texture that my hands were assuming, thanks to the extra washings? Or maybe the water bill that had skyrocketed because of the additional laundry I was doing when the Pampers just couldnt accommodate the excess loads they were being asked to hold. In any case, they had told us to call if the diarrhea didnt go away in a couple of weeks, so we did.
    Apparently, what they meant to say was, well tell you to call if it doesnt go away just go get you out of our office feeling like we did something, but really wed rather you dont bother us because all were going to do is give you another obligatory four minutes listening to you whine and then tell you is that theres nothing wrong. Why cant people just say what they mean?
    Instead, I endured the heavy sighs of the receptionist who took it upon herself to play doctor and say, You mean youre bringing him in again just because of diarrhea? Well, yeah. Thats what I was told to do! Several heavy sighs and even an I-hate-neurotic-new-moms-snicker later, we had an appointment - for three weeks out.
    The second visit was, as I eluded to, an obligatory waste of time. After looking in Tyers ears, nose, and throat (did I lead you, Doctor, to believe that this problem was above his waist?!?), the doctor concluded that there was nothing to be concerned about. Oh, really? I guess its normal to be changing 22 diarrhea diapers a day? I dont think the doctor was amused when I offered to present him with a stool sample, since I was sure in the next ten minutes we would have one that we could examine together. No, I was sent away and told, once again, to call if the situation didnt improve in the next two weeks. Yeah, sure. Ill be sure to do that.
    It was with sadness and grief that I realized this pediatrician whom I had hand-selected after interviewing no less than 12 in the area, and who had offered a congratulatory hugs less than 12 minutes after Tyler was born, was not listening to me. It was time to find doctor-number-two.
    Sadly, our experience with doctor-number-two was a repeat of that with number-one. A quick looks in the ears, nose, and throat, followed by a declaration that we had a healthy baby boy sent my blood pressure skyrocketing. But what about the diarrhea I mentioned? I managed to ask with control worthy of the Nobel Peace Prize. Really, diarrhea is nothing to worry about unless the child is severely dehydrated and losing weight, I was told, as though I had the I.Q. of a water bottle. Well, Ive been force-feeding water to avoid dehydration, I explained, thinking that might make him realize that there was a reason Tyler wasnt shriveling up from thirst. Oh, good, he replied as he raced out the door to his next four-minute appointment. Keep it up and call me in two weeks if the situation hasnt improved. Ugh.
    After a few months, several hundred dollars worth of diapers, and cracked and bleeding hands, we switched to doctor-number-three. We chose a woman this time, figuring maybe some element of womans instinct or a maternal inkling would alert her to what we believed was a worsening condition. Well, hes in the 75th percentile for height and weight, she declared after looking in his ears, nose and throat. Certainly nothing to worry about with this bruiser, she gloated. Trying to be patient, hiding the clenched fists, and managing a smile that was as sincere as that of a politician running for office, I replied, But he used to be in the 98th percentile. Wouldnt that indicate weight loss, which could be a sign of something wrong? Oh, honey, dont be ridiculous! What do you want, a prize fighter? Hardy, har-har. I had a real Carol Burnett on my hands. Again, we were sent away and - you know the rest.
    And so it was. There was nothing wrong. Never mind that he had been loading up 22 diarrhea diapers a day for the last nine months - apparently he was just a poop machine. Never mind that his belly had grown distended to the point that he couldnt bend over and pick up his toys. Never mind that his arms and legs were skinny - hey, he was still in the 70th percentile for height and weight, and its not like I was trying to raise a prize fighter or anything.
    So it was without a care nor a complaint that I dragged my irritable, listless little Biafra baby into the office of doctor-number-four, a doctor to whom we were assigned when we changed insurance plans. After looking in Tylers ears, nose and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see if its ripe. My goodness, he said with that Im-alarmed-but-Im-a-doctor-and-dont-want-to-freak-you-out-so-Ill-smile-smugly-and-act-calm voice, Whats going on with his belly? I couldnt answer through the tears of relief.
    Relief turns to terror
    I never thought Id be so excited to be referred to Childrens Hospital. I called my husband with the good news. Sweetie, guess what?!? We have to go to the hospital! I announced as though we had just won the lottery. Never quite sure how to respond to my usually-overly-enthusiastic-and-not-always-sensical proclamations, he replied, as usual, with caution. Really? Is that a good thing? I guess in retrospect it wasnt a dumb question, but at the time it deserved, DUH! Were going to see the gastroenterologist!
    On the drive to the hospital, we sung the I love you song with such glee that it made Barney look like a candidate for Prozac. Were going to the hospital to see the nice doctor whos going to help us make you feel better, I sang to the tune of whatever I could come up with on short notice. Tyler, 18 months old then, sang too, and we practically danced into the doctors office for our first visit with the gastroenterologist.
    Somehow a three-hour wait in a doctors waiting room does a lot to dampen enthusiasm. Our gastroenterologist didnt even look in Tylers ears, nose or throat, a small favor for which I could have kissed him, even as tired and hungry as I was. He did do the honeydew thump on Tylers belly, and asked how long he had been experiencing diarrhea. Oh, about nine months now, I commented. Nine months? he asked. The large eyes and knitted eyebrows spoke for him, so he didnt have to finish his thought, which was obviously, Why did you wait so long, you oblivious, inexperienced nitwit?
    We were told that a variety of tests needed to be run. He tossed around names of these tests: upper G.I., lower G.I., ultrasound, serology, endoscopy, biopsy fecal fat, enzyme panel, WBC, and sweat test. Thinking maybe I had slept in those days during my Bio 101 classes in college and not wanting to admit it, I said, Oh, right. So that means youre testing for.... as though the condition was right on the tip of my tongue and I just couldnt recall it. He saved me the awkward silence that would have ensued and filled in the blanks. Were going to be looking at a number of possibilities: blood diseases, cancer, cystic fibrosis...that sort of thing. I thought I was going to faint.
    The bittersweet diagnosis
    After signing reams of release forms that we never read, and allowing doctors to poke, prod, anesthetize and scope our baby, we finally got a call from the doctors office asking us to come in for a consultation with the gastroenterologist. Well, cant you just tell me what it is on the phone? I asked. No, he wants you to come in, the receptionist told me. But is that a bad thing? Wouldnt he just call to tell me nothings wrong if my baby was okay? I began to panic.
    After a three-day wait in the waiting room (okay, it just seemed like three days because hours spent waiting in a 4 X 4 cubicle with an 18-month-old are automatically quadrupled in value), we finally saw the doctor and heard the words that would change our lives forever. Your son has celiac disease. Huh? Is that anything like a flu bug? Surely there was a pill we could give him that would make it all better. It simply requires a dietary change... Okay, so maybe we overdo the goldfish-shaped crackers a little - we can do without for a few weeks. ...he wont be able to eat gluten for the rest of his life.
    Back up the truck here, Mister. Rest of his life? Gluten? Is that anything like glucose? Because we can surely cut down on sugar....
    In a state of shock, we were directed down the hall to the hospital dietitian. Without looking up, she put her hand out, presumably wanting the chart that we had been instructed to give to her. Still in a daze, we handed her the chart. Several seconds of silence passed - had she fallen asleep? Was she writing her grocery list? Had she forgotten we were there? Finally, she said, So you need information on the gluten-free diet, huh? Dont get many of those. Really? I asked. How many have you had? None.
    She handed us a crumpled blue piece of paper that had writing on both sides. The first side, filled with size-two font, listed the foods and ingredients we were to avoid. The other side had size 48 font, presumably in an effort to make the page look full, and was titled, Acceptable foods on the gluten-free diet. There were six items on the list.
    Our first shopping trip
    Still resembling a zombie, I realized I had an 18-month-old child to consider, and he had been through as much as we had, so I asked what he wanted to do. Get a tweat! Cwackews! he replied (translated to treat and crackers for those of you whose kids are over 12). Not a bad thought. We had to learn how to shop sometime, so off we went on our first gluten-free shopping expedition.
    Armed with our crumpled blue sheet, we started in the cracker aisle. Carefully reading labels, I was amazed and delighted to find that not a single package had gluten in the ingredients list! How easy was this going to be! Lest you think that I do have the I.Q. of a water bottle, you have to remember that I was till in a state of shock, topped off with a touch of denial.
    I consulted my trusty blue sheet and realized that flour was, indeed, buried in the size-two-font list of forbidden ingredients, and put back all the crackers I had tossed into the cart. We went up another aisle. Pretzels...nope. Bread...not even close. But Mommy, I just want a tweat. Tylers patience was wearing thin. In desperation, I picked up a bag of Fritos. Could it be? Really? Surely I missed something. No, it was true. Not a single gluten molecule to be found! Hallelujah. I grabbed seven bags and headed for home.
    Ten years later...
    The beauty of living with the gluten-free diet is that you learn to love the gluten-free diet. Not only is it a medical necessity in our family, but it is a healthy way of life. Sometimes when I think, If only I could not have to worry about making tonights meal gluten-free, Id make..... WHAT? What WOULD I make? Would I make macaroni and cheese out of a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now theres a healthy meal. We put so much emphasis on making healthy meals that we wouldnt do those things anyway (well okay, every now and then maybe!).
    We are so fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available. Customer service reps actually know what were talking about when we ask if their products are gluten-free. Cookbooks and resource books abound, as do support groups and seminars.
    Most of all, those who are diagnosed are the lucky ones. No longer do they have to wonder why theyre fatigued, depressed or suffering gastrointestinal distress; they can rest assured knowing their gluten-free diet is preventing them from being more susceptible to conditions such as intestinal lymphoma, infertility, and osteoporosis.
    Yes, this diet can be a pain, but follow the mantra and you will be liberated. No longer will the diet control you, but you will control your diet. So....all together now ... Deal with it; dont dwell on it!

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    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.