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kaytuh posted a topic in Post Diagnosis, Recovery & Treatment of Celiac DiseaseHi All! I've been lurking here for a month, ever since my postive blood tests. I'm feeling pretty comfortable with some of the basics, but now that I've recieved a postive bioposy I wanted to really dive into what's going on in my body, and how I compare to others. Here goes... Current Age: 24 Symptoms: Just general stomach aches and cramps my whole life, I never noticed a particular gluten trigger, and childhood doctors dismissed it. So now as an adult I went to the doctor and mentioned I got a lot of stomach aches, and they reccomended a blood test to check for celiac. I have no family history of celiac. Blood Test Results: Transglutaminase Ab IgG/M/AL Tragl IgM: 3/20/2014: 5.9 U/mL Tragl IgA: 3/20/2014: 11.2 U/mL Tragl IgG: 3/20/2014: 53.5 U/mL (I'm confused if this is the full panel, or what blood tests these exactly are? Are they the Tissue transglutamise tests I've heard about on this site?) Biopsy Results (I can't even begin to interpret these) DUODENAL MUCOSA WITH LAMINA PROPRIA EXPANSION BY LYMPHOCYTES AND PLASMA CELLS, VILLOUS BLUNTING, AND INCREASED INTRAEPITHELIAL LYMPHOCYTES, SEE NOTE. B: STOMACH, RANDOM, BIOPSY: : ANTRAL AND OXYNTIC MUCOSA WITH MILD CHRONIC INFLAMMATION. : NO HELICOBACTER ORGANISMS IDENTIFIED ON WARTHIN-STARRY STAIN (CONTROL SATISFACTORY). : DETACHED FRAGMENT OF INTESTINAL EPITHELIUM, NO SIGNIFICANT HISTOLOGIC ABNORMALITY. NOTE: The findings can be seen in the setting of gluten-sensitive enteropathy (celiac disease), small intestinal bacterial overgrowth, drug-induced injury, tropical sprue, immune disorders, and sensitivity to non-gluten proteins; however due to the patient 's documented history of positive Celiac serology, the findings are most likely consistent with Celiac disease. Clinical correlation recommended. So now I've been one week gluten free, and I'm starving all the time and still have D (only about once a day though) Since my pathology report says the findings could also be the result of other allergies (I have a lot), bacterial overgrowth (I've heard my crazy hunger could be candida overgrowth) or some other autoammune disorder- I'm just curious if there's any chance I have something else going on? How do my results compare with other patients? SO many questions! Thank you!!
Danna Korn posted an article in Kids and Celiac DiseaseThis article originally appeared in the Summer 2003 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 07/05/2010 - When “our product isn’t gluten-free” doesn’t necessarily mean “our product isn’t gluten-free” You’ve found a food you’d really like to eat. You’ve read the label, and it looks as though the product might be gluten-free. You’re drooling! You can dig in, right? Wrong. It’s a good idea to call the manufacturer to confirm that there aren’t hidden sources of gluten. Years ago, when we would call manufacturers and ask them if their products were gluten-free, they would either suspect us of making a crank call and hang up, leave us on “hell-hold” for 35 minutes while they “checked” (a euphemism for when they put you on hold and hope you hang up), or respond with a confident, “Oh no, honey, there’s no sugar whatsoever!” Before you bother calling the manufacturer, read the label. If there is an obviously unsafe ingredient, don’t waste your time or theirs. Tune in to the person on the other end of the phone. Do they sound like they understand what you’re talking about? Are they giving you conflicting information? Can you trust what they say? Fortunately, most product labels have a toll-free phone number listed on the packaging. I highly recommend carrying your cell phone in the grocery store with you, so that you can call quickly while you’re still there—before you buy a product. These days, most customer service representatives actually know what we’re talking about most of the time, and can offer a knowledgeable answer that instills confidence that the answer is accurate, albeit sometimes not all that helpful. When you call a company to find out if its product is wheat or gluten-free, you’ll get one of four responses: No, our product is not gluten-free: Do not interpret this as meaning, “No, our product is not gluten-free.” I realize that’s what they said, but it may not be what they mean. Probe deeper by asking, for example, “Can you tell me what in your product has gluten in it? I read the label and didn’t see anything questionable.” One time when I asked this, the woman told me it was “whey” that contained gluten. Penalty flag! Whey doesn’t contain gluten! This is when you need to realize that you’re talking to someone who doesn’t understand the concept, and you should ask to be transferred to a quality control supervisor. Sometimes this response is accurate, and either an ingredient wasn’t clearly called out on the label (unfortunately, this still occurs from time to time), or you were calling about a questionable ingredient only to find out it’s a good thing you called. We can’t verify its status: Translation: “It’s wheat-free/gluten-free, but we’re covering our rear ends because we don’t want someone to sue us.” Sadly, in our litigious society, it may actually be a founded fear that they have. Of course, this response—”we can’t verify its status”—could actually mean what it says—that they can’t verify the status. Usually they’ll tell you this is because they get their additives from other sources, and even though they claim to be gluten-free, Company A doesn’t want to be responsible in case Company B used gluten. The risk factor in either case is probably low. Every now and then, this response is given because they have an “If we tell you what’s in our product, we’d have to shoot you” mentality. Assure them that you’re not trying to steal their oh-so-treasured secret-sauce recipe, but that you have a serious medical condition that requires you to know if there are certain ingredients in the food you eat. Sometimes you just can’t get an answer, in which case you fall back to the golden rule: When in doubt, leave it out! Yes, it is gluten-free: This doesn’t necessarily mean, “Yes, it is gluten-free.” You have to judge for yourself whether or not they truly understand the concept. Sometimes they’ll follow it up with, “There are no sources of wheat, rye, or barley, and there are no questionable additives. Therefore it’s safe for someone with celiac disease, gluten intolerance, or wheat allergies.” Ah, you just want to kiss these people. Other times, when pressed, they get squirmy. If you say, for instance, “Oh, okay, then I can assume the modified food starch is derived from a non-gluten source?” and they give you an audible “blank stare,” you might want to dig a little deeper before trusting their answer. Huh? Thankfully, this isn’t a common response anymore, but it does happen. Politely try to explain what types of ingredients might be in the product you’re calling about, and if it doesn’t “click,” ask to speak to a quality control supervisor or nutritional expert. Of course it’s helpful and sometimes necessary to be specific in some cases, saying, “I’m calling to see if this product is gluten-free, which means it doesn’t contain wheat, rye, or barley.” Not only is this clarification helpful for them, but you may have educated one more person about gluten. Many times, one of the added benefits of calling, even if the product you were calling about turns out not to be okay, is they’ll offer to send you a list of their wheat-free/gluten-free products (sometimes they even toss in a few coupons). Always take them up on it, and save the lists for future reference. It’s important to learn from your answers. If there was an ingredient on the label that you had never heard of, and you talked with a knowledgeable customer service representative who told you that product was gluten-free, take note. That means the ingredient is gluten-free, too. Add it to your own copy of the safe and forbidden list, and remember for future label-reading experiences. Excuse me for a moment while I put on my Miss Manners hat, but it’s important to be polite, professional, and appreciative when you call manufacturers. Not only will you get much better service, but we need them! We need them to comprehend the gravity of our questions and to understand how important it is to be 100 percent sure that the answers they give us are accurate. We need them to realize that they can’t guess at their answers, and that we very much appreciate that they understand what we’re asking. Calling manufacturers can be a pain, for sure, but it’s an important part of living and loving the gluten-free lifestyle. Not only is it a good habit for you since ingredients change frequently, but it sends companies the message that if their labeling was clarified, we wouldn’t bother them so often! It also tells them that millions of people avoid wheat or gluten, and maybe they’ll think twice before using an ingredient that has a wheat source when they have the option to use one that is wheat and gluten-free. This article was partially excerpted from Danna’s book Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living.
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!