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Found 24 results

  1. Hello I'm wondering if any of your children had to do the gluten challenge, and if so how long did you do it and did you get positive results. I'm very worried about my daughter. She did the gluten challenge and got to 7 weeks plan, she has been a bucket of sick since starting, was to get to 12 but she caught a cold and it hit her so bad that she ended up in the ER with breathing difficulties so I took her in the next to get her blood tests. I figured we could go in and get a referral even if the results are negative. I'm terrified I made a mistake by not waiting longer. We did the bloodwork on Monday and still haven't heard from the doctors. I am trying not to panic but there is something going on with my kid and I want answers. I'm not feeling very patient. thanks for listening
  2. Good afternoon, My 5 year old daughter has just received her diagnosis of celiac's disease after a biopsy. I have not met with the gastroenterologist since the diagnosis (apparently next appointment will only be in a few months) and we have been told that we will be contacted for an appointment with a nutritionist in a few weeks. Until then, I am left with a lot of questions. This is day 2 of going gluten free and I am feeling slightly insane. I see bread crumbs everywhere! I am trying to think of all the ways cross contamination can occur and have designated a small isolated section of my counter as the GLUTEN counter, where anything bread related must happen. As I fiddled around making three different lunches to accommodate my 4 small children's particular dietary needs and preferences (the 5 year old with celiac is the eldest, and one of my twin babies has an egg allergy), I thought I would lose my mind. Bread crumbs would travel on my fingers, I worried about transporting toast to a plate near hers, and of course, the dreaded idea of toasting her first ever slice of gluten free bread in the regular toaster. I must have washed my hands 10 times and I had to restrain myself from making her eat at a separate table lest her twin baby sisters started to toss their crusts around. I am making a list of things to buy to use exclusively for gluten-free stuff: I need new wooden cooking instruments, a new nonstick pan, a new toaster... or do I? There is a part of me that wonders if I am succumbing to some kind of collective gluten paranoia. Please don't get upset at me for feeling that way! I just have trouble wrapping my head around the idea that a tiny trace of gluten left in a pan that has been cleaned could really do any damage. I have tried to think of the gluten as a poison. It's not like I would accept "just a wee bit of arsenic" in my children's food. But then again, I am visualizing gluten like a feral cat clawing away at my daughter's gut, and then thinking about the little speck of gluten leaving a tiny pinprick... which doesn't seem so concerning. So how bad is cross contamination REALLY? In your experience, based on your knowledge, based on your opinion. I'm open to your thoughts. But, please understand that at this time, I am NOT considering turning my home into a gluten-free home. I don't want everyone to be deprived because of one person's diagnosis, and quite frankly I can barely imagine how I will finance one person's gluten-free diet, let alone 6! Thanks for your feedback!
  3. Celiac.com 03/01/2018 - Mortality rates for children under five have been falling steadily for decades. Additionally, there's plenty of data to indicate that rates of celiac disease have been rising in general population. Before doctors understood the role that gluten played in celiac disease, the prognosis for young children with the condition was grim. Since doctors didn't understand the underlying disease, many of these deaths were simply logged as deaths due to wasting or failure to thrive. Could fewer children dying from celiac disease help explain the apparent rise in celiac rates? In an attempt to answer that question, a team of researchers recently set out to to investigate a possible relationship between mortality rates in children under five years old and rates of celiac disease. The research team included F Biagi, A Raiteri, A Schiepatti, C Klersy, and GR Corazza. They are variously affiliated with the First Department of Internal Medicine, Coeliac Centre, and the Biometry and Clinical Epidemiology, Fondazione IRCCS Policlinico San Matteo, University of Pavia, Pavia, Italy. A review of medical literature revealed 27 studies from 17 different countries concerning rates of celiac disease in schoolchildren between 1995 and 2011, 4 studies were performed in Italy. The researchers conducted a meta-analysis of prevalence rates and compared them between specific country under-5 mortality groups, publication year, and age. Over the last twenty years or so, mortality rates for kids under 5 have been decreasing all over the world. This reduction has mirrored an increase of the rates of celiac disease. The Spearman correlation coefficient was -63%, 95% confidence interval -82% to -33% (P < 0.001). The data show that higher mortality rates mirrored lower rates of celiac disease. This finding is confirmed by the meta-analysis of the four Italian studies. Rates of death for children under 5 years of age seem to influence rates of celiac disease in the general population. Basically, less kids dying young contributes to higher celiac disease rates later on. Because gluten-free diet treatment and numerous other developments allow a better survival of children with celiac disease, the number of people with celiac disease will likely increase for some time into the future. Source: J Pediatr Gastroenterol Nutr. 2018 Feb;66(2):289-294. doi: 10.1097/MPG.0000000000001696.
  4. Celiac.com 09/22/2017 - I run into many parents who are in quite a quandary about instituting a gluten-free diet for their child. A typical scenario is that one of the parents is gluten intolerant and is highly suspicious that their child is as well. Due to the child being 'relatively healthy' the non-gluten intolerant spouse suggests that the child be able to 'live a little' and enjoy the cake and pizza that is so prevalent during children's parties and sporting events. In my opinion, there is no question about whether a gluten-free diet should be implemented, after confirmation that gluten intolerance exists that is. I know that gluten intolerance vastly increases your risk of developing diseases that can affect almost any system and/or organ in the human body. The evidence shows that it vastly increases your risk for autoimmune disease. I also know that it can be rather silent in a younger body, but if a positive test exists, then it IS doing damage, regardless of whether it is felt or not. To add a little more strength to my argument is the result of a recent study published by the Journal of Human Nutrition and Dietetics wherein researchers aimed to evaluate the influence of celiac disease on the social aspects of life in those living in the U.S. Not surprisingly celiac disease did have a negative impact on the quality of life in social settings, specifically in the area of travel and dining out. However, and this is where I find that most people make their mistake with their children, the researchers found that 'those diagnosed in childhood and maintained on the diet experienced a reduced impact on their quality of life as an adult'. So it turns out that you aren't doing any favors to your at-risk child by putting off the implementation of a gluten-free diet. You're not only creating negative impacts health-wise, as mentioned above, but by delaying a gluten-free diet you are also condemning them to the perception of a lower quality of life. If you think about it, if gluten-free is pretty much all you've ever known, you would be less likely to miss it. You haven't built up the memories of gluten-containing cakes and pizzas and pancakes. Please do not put off testing your child because you think you're doing him or her a favor by putting it off. The truth is quite the contrary. Waiting could allow an autoimmune or other illness to develop that could have been avoided. There is absolutely NO benefit to one's health to continue eating gluten when one is gluten intolerant, and it turns out that there is no benefit psychologically either. Have you run into this argument from friends or family? Have you put off diagnosing a child because you were made to feel guilty? Please write to me and let me know your experiences and thoughts. To your good health. Reference: Journal of Human Nutrition and Dietetics. 2012 Feb 25. Living with coeliac disease: survey results from the USA. Volume 25, Issue 3, pages 233–238, June 2012
  5. Celiac.com 08/15/2017 - Some evidence indicates that rates of celiac disease in the general population are increasing over time. Prior to the discovery of gluten's role in celiac disease, the prognosis for celiac sufferers was bleak. Did higher betas of death keep celiac disease rates correspondingly lower? To provide an answer, a team of researchers set out to examine a possible relationship between mortality rates for children under five, and prevalence rates of celiac disease. The research team included Federico Biagi; Alberto Raiteri; Annalisa Schiepatti; Catherine Klersy; and Gino R. Corazza. Their team conducted a review of literature, and found 27 studies done in 17 different countries between 1995 and 2011 describing rates of celiac disease in schoolchildren. Four of the studies were conducted in Italy. Their meta-analysis compared prevalence rates between specific-country under-five mortality groups, publication year and age. In recent decades, mortality rates for under-five year olds have been decreasing all over the world. This reduction is paralleled by rising rates of celiac disease. The Spearman correlation coefficient for these terms was -63%, 95%CI -82% to -33% (p < 0.001). So, the higher the mortality rate, the lower the prevalence of celiac disease. This finding is confirmed by the meta-analysis of the 4 studies conducted in Italy over time. The mortality rate for under five-year-olds seems to influence the rate of celiac disease in the general population. They predict a rise, in the near future, of the number of celiac disease patients, due to better survival rates of celiac children. Source: Journal of Pediatric Gastroenterology & Nutrition: Post Acceptance: July 27, 2017. doi: 10.1097/MPG.0000000000001696
  6. Hello all! I'm planning a road trip with my 11-year-old daughter this summer through much of New England. She's Celiac and a vegetarian and we are hoping to explore some of the "off the beaten track" locales to hike, bike, and kayak so I was wondering if anyone could offer any suggestions for restaurants and grocery stores along the way that would keep us safe. We don't have a set itinerary at the moment so we can adjust our travels to incorporate tween/celiac friendly locations. I would really appreciate any suggestions for either as I am a West Coast girl visiting the NE for the first time. We have been lucky for the most part in our travels but I have found it best to ask locals and people who have traveled in the areas before so we can be armed to create memories...the good kind. Thanks al!
  7. Celiac.com 03/08/2017 - With summer coming soon, many parents want their child to experience summer camp. If your child has gluten intolerance (and/or other special dietary needs) the summer camp anticipation and experience itself can be anxiety provoking for you, and for your child. As a parent, it is normal to have concerns about sending your child to camp, of course, particularly when the camp is providing meals. Here are some simple tips to help you advocate for your gluten intolerant child, and keep him/her safe at camp this summer. Not only should parents be their child's advocate - parents also need to teach their child how to be a well educated self advocate. Many of these tips are also applicable to school settings, birthday parties and other social gatherings. Prior to each camp session, schedule a meeting with your child's supervising camp staff to discuss your child's dietary needs. Be very clear about what your child can and can't tolerate, as well as the short-term and long-term consequences of consumption of those foods. Bring copies of helpful facts and information, and even myths to educate the staff. You can also bring helpful books and/or videos to share. Any notes from your child's health professionals may be helpful as well. Let the staff know you mean business and you take your child's needs very seriously. Your child should never be turned away from a camp due to their dietary needs. That would be a conflict of the Human Rights Code! Request that your child's camp staff post an educational fact sheet in the camp office, staffroom, and main rooms in the camp building about his/her dietary needs and condition (e.g., celiac disease), as well as a list of foods that your child must avoid. Get a medical alert bracelet for your child, and list your child's condition(s) (e.g.,. celiac disease), as well as your child's dietary needs clearly (e.g., gluten intolerant). Allerbling.com is a great resource and they offer fun colors and patterns. Ask the camp staff if you can come into the camp one day and have a discussion with the campers about your child's condition/food intolerance. You can even find out if you can bring in props, such as products your child is and is not allowed. You might want to bring in a short video about celiac disease and the gluten-free diet. Find out if there will be birthdays being celebrated at camp, and then contact the parents of the birthday child the week before, and again the day before the birthday party to inform and remind them about your child's food intolerance. You could also offer to bring treats that your child is allowed. Send some "back up" snacks and treats for your child for camp staff to store, even if it's a package of cookies, or a cupcake – just in case there are celebrations or times when treats are given out that your child cannot have. Teach your child about his/her food intolerance, and teach your child to share the information with others. It is a good idea for your child to learn how to self-advocate at a young age. If your child is very young, you can teach through the use of puppets. Research shows that young children learn very well through the use of puppets. Many non-profit associations offer camps, support groups and educational programs for children. Gather information from trusted organizations such as the Canadian Celiac Association or the Celiac Sprue Association. Be positive – learn to look on the bright side, and teach your child to do so as well. There are many advantages to living gluten-free. Keeping positive and demonstrating strength will make your child stronger and better able to cope. Remind your child regularly that their differences are what make them special!
  8. Celiac.com 11/21/2016 - Even early on, strange inconsistencies caused Dan and Davina Dixon to wonder about her daughter, Rebecca. With dark hair and olive skin, Rebecca looked visibly different from her fair-complected parents. She looked different enough to wonder, as a child, if was adopted, if Dan and Davina were really her biological parents, as they assured her they were. Later, in her twenties, Rebecca developed celiac disease, which usually runs in families, even though no one else in their extended family suffered from it. Most of this was merely fodder for curiosity, until the day Davina saw a Facebook post that mentioned how rare it is for parents with blue eyes to have a child with brown eyes. Wondering about Rebecca's brown eyes, Davina went to the family doctor, who suggested a blood test. That's when the real mystery began: The blood test revealed that Rebecca's dad, Dan, was not, in fact, her biological father. There was absolutely no doubt. Dan's blood type was AB, while Rebecca's was O-Positive. That makes it impossible for Dan to be her father. A paternity test followed, and confirmed the blood results. There was simply no chance that Dan was Rebecca's biological father. Naturally, the Dixons began to search for answers. As reported by Kidspot, Rebecca was raised believing that Dan and Davina were her biological parents. The couple had tried for years to conceive a child. Unsuccessful, they turned to Dr. Norman Barwin, a gynecologist and fertility expert known by many as Canada's "baby god." The couple wondered whether there could have been some sort of mix-up in Barwin's office. Eventually, they noticed Rebecca bore a striking resemblance to Dr. Barwin, himself. Soon after that, as CTV News reported, a woman conceived at the same clinic learned that she was genetically related to Barwin. A DNA test confirmed that Rebecca and the woman were half-sisters, and their father was Dr. Barwin. Apparently, Barwin's role as a sperm donor to his own medical practice was kept secret from both sets of parents. The Dixon family is now suing Dr. Barwin for negligence and breach of trust. The lawsuit requests that Barwin turn over a DNA sample, to determine if any other children conceived at his clinic are his offspring, and to notify them accordingly. Read more at: Kidspot.com CTV News IJR.com
  9. Celiac.com 11/01/2016 - Homeopathy has been around for quite some time. You even see it in drug stores these days. Here are some basics behind homeopathy. Certain substances that create a reaction in a healthy person can cure a sick person with the same symptoms. Unlike conventional medicine, homeopathy is considered more effective when the substance is diluted and shaken and is considered more effective each time this dilution and shaken process is done. This also makes it much safer as there is so little of the active ingredient actually in the homeopathy. It is tailored to each person depending on their health record, physical symptoms, emotional state, etc. Not just a one size fits all approach. One point that is great about homeopathy as opposed to "regular" medicine is the side effects are next to nothing. The dosages are so small and contain so little of the active ingredient that the worst thing to happen would be that no beneficial effect occurs. If your child is celiac, then you have probably had plenty of issues with ingredients in medications as well as sensitivities with substances in them that aren’t even gluten. I have run into many kids who are celiac who cannot handle all sorts of other substances due to their gut. The good thing about homeopathic preparations is that many of them are gluten-free. I actually have never come across one with gluten so far. This makes it very easy to find remedies that your celiac child can handle. No strange ingredients that are made in a laboratory either. I specifically use chamomile and arnica for my son when he is teething. There is a combination of specific ones for teething but the individual dosages always work best for my toddler. I see a large difference in his overall attitude and pain level when I administer these two. Of course there is always a place for standard medicine but I try to avoid drugs when I can. Especially with my damaged gut from being misdiagnosed for 17 years! This allows the body to learn and adapt to properly fighting germs so there is less of a chance in getting sick the next time a bug is being passed around. Plus, have you read some of the warning labels on these drugs that doctors recommend? Pretty scary, horrible side effects! Worse than the sickness you are treating. Give homeopathy a try and see if it gives you, your celiac child or your family any comfort.
  10. Celiac.com 08/02/2016 - One thing I have noticed since becoming a parent is how every place we go there are treats and candy. Even cashiers hand out candy at the checkout. Food is everywhere. Our kids are constantly being bombarded with sugary baked goods and salty snacks. Wow, how times have changed! When I was a kid, and yes, my saying that makes me sound ancient, but it was only the 80's...back then we were sent outside in the morning and all of the neighborhood kids convened in someone's backyard. We went home for lunch and moms certainly did not hand out treats, especially not butterfly shaped waffles or any of the other Pinterest-inspired foods out there. We considered ourselves pretty lucky if someone had Freeze Pops in their house. If you are raising a child gluten-free, you know how much of a challenge it is that everything revolves around food. The diagnosis of celiac disease or non-celiac gluten sensitivity is a huge eye opener for many. I think one of the hardest things for a family starting a gluten-free diet is how different our diet is from the way most people cook and eat. Since the 1950's we have morphed from TV dinners to buying entire meals from the grocery store deli, and our breads, cakes, and rolls from the bakery. And we've moved from a dinner out being a rare treat to the drive-thru being the norm for many families. Some parents never learned how to cook themselves, so it can be quite a shock to go from a world of just picking up dinner at the drive-thru or the deli, to a world of cooking from scratch at home. I know. I was a processed foods kid, and now I am definitely a "semi-homemade" cook. Going gluten-free can be overwhelming at first. It will get easier. Here are a few tips and resources for raising a gluten-free child. Take advantage of the internet and your smart phone. I love subscribing to digital gluten-free magazines, finding new recipes and reading books from my Kindle App. Make grocery shopping easy by using The Gluten-Free Grocery Guide by Triumph Dining (1). They have produced an app that tells you which foods are gluten-free at the grocery store. The app features popular brands and even includes store brands. They have done the research for you by calling brands and manufacturers to create this resource. I know how hard it is getting through the grocery store with kids in tow. It needs to be as easy as possible! Know that you are not alone. There are many other parents facing the same obstacles as you. Surround yourself with support. R.O.C.K, Raising Our Celiac Kids (2) is a support group that can help you with the challenges ahead. Two other support groups you may look into are The Gluten Intolerance Group (3) and Celiac Sprue Association (4), while these are not groups for kids, they still provide valuable help and information. Talk to family and friends about the seriousness of your child's needs. A lot of people don't understand how celiac disease or gluten sensitivity effects someone. Educate them. Make it clear that foods can't just be given to your kid, even a food that one may think of as gluten-free. Tell them about hidden sources of gluten. Let them know why a gluten-free menu at a restaurant may not actually be gluten-free. If your child spends a lot of time with a relative go over items in their home, like their toaster, that may be sources of cross contamination. Teach your child the effects of cheating on their diet can do. Short term and long term. There are going to be many times of temptation. They are eventually going to be teenagers and have their own transportation and money. They need to be able to make smart choices as young adults. Be prepared for class parties and classmates' birthdays. I suggest making it easier for yourself by giving a good supply of treats to your kid's teacher and having a good store of treats at home. Some yummy pre-packaged treats are Jelly Belly Snack Packs, Enjoy Life Cookies, and Lucy's Cookies. These are great choices for multiple food sensitivities. I also recommend packing snacks for around town, play dates, and after school activities. Having healthy gluten-free snacks on hand is important for when there may not be any allergy-friendly snacks available. I try to stick to as many natural foods as possible, but occasionally, I like a treat or an easy meal. Thanks to the huge growth in gluten-free consumers there are a ton of food choices available. Gluten-free pizza, mac 'n' cheese, chicken tenders, cookies, pasta, even gluten-free toaster pastries. If you live in a rural area, with stores that don't carry a lot of gluten-free items, take advantage of online shopping. I like the ease of shopping from Amazon, Vitacost and The Gluten-Free Mall. As a busy mom I love that I can get items delivered to my door. Get your kids in the kitchen. Teaching your kids to cook is an invaluable resource that will serve them life-long. Learning how to make a meal from whole natural foods can be fun and it teaches them how to eat a healthy diet. You can do this yourself or there are a lot of kids' cooking programs at local culinary centers, grocery stores, and community centers. Kids will adapt and adjust. If they are older and have been eating gluten-containing foods their whole lives, it will be more difficult because their palates have been formed. Try to ease the transition by having them go grocery shopping with you so they can learn what is still available to them, and then do something fun like chocolate gluten-free waffles. Or pick up some gluten-free ice cream cones and ice cream. Let them know they don't have to give up everything. Having a positive attitude is essential. Children will model what you show them. References: http://www.triumphdining.com/glutenfree/apps.php https://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html https://www.gluten.net/gluten-intolerance-group-branch-offices/ 4.http://www.csaceliacs.info/find.jsp
  11. I just had my doctor test for celiac with my 7.5 year old since they were doing an iron test as well. They don't have the results of the iron yet but celiac came back like this (sorry my notes are bad): - IGA reticulin antibody was negative - gleatin: IGA and IGG - greater than 100 and 30 is considered postive - ttg IGA was 52.5 and greater than 10 was considered positive I mentioned this to co-workers as I had told them last week she was getting tested for celiac. I told them the next step is meeting with a gastroentrologist and then likely an endoscopy. One co-worker suggested doing an elimination diet instead of putting my daughter under for the endoscope. What are thoughts on that? I generally am hesitant to put my child under for something but I feel it is warranted in this situation instead of always wondering does she have it or not. This is all new to me. Thanks!
  12. Celiac.com 12/22/2014 - Is your child sneaking a bite here and there off his or her needed gluten-free diet? You should know not only for the health of your child but to also ensure there are no other issues you need to help address, such as an allergy to nuts or dairy which can cause other issues. As a parent we need to stay on top of things to get to the bottom of any “unresolved” issues in their little bodies. If your child has been diagnosed with celiac disease, it’s critical that he or she follows a diet 100% free of gluten. Alarmingly, according to Celiac.com, 43% of celiacs cheat on their gluten-free diet, and 13% cheat 20-40 times per year or more for various reasons. One of the reasons children may cheat on their diet is because they don’t have substitutes for their favorite gluten-containing foods. Have a talk with your child about the gluten-containing meals, snacks, and desserts he or she craves and misses and make sure there are plenty of gluten-free versions of these foods available at all times, especially over the holidays. Another reason celiac children may cheat on their diet is because eating gluten doesn’t make them feel sick. It’s important to sit down with your celiac child and have a heart-to-heart talk about how even though your child doesn’t feel sick, gluten is still wreaking havoc on the villi of the intestines which in turn can lead to very serious health conditions such as infertility and gastrointestinal cancer. You may want to include your child’s doctor or nutritionist in this discussion. Lastly, get your child excited and proud to be gluten-free. Have your celiac child join a local celiac children’s group to stay motivated and feel “normal” and connected to others with the same dietary restrictions. Pick out special gluten-free recipes to make for dinner or dessert. Attend a gluten-free cooking class together. There are many ways to his or her celiac pride. Your child won’t be tempted to cheat when you make this recipe! Gluten-Free Chocolate Chip Cookies This is the original Toll House recipe, halved because I don’t want to make so many cookies. These are really delicious! Ingredients: A heaping 1 ¾ cup rice flour or gluten-free flour mix ½ teaspoon xanthan gum ½ teaspoon baking soda ½ teaspoon salt 1 stick shortening, Earth Balance, or butter ½ cup brown sugar ¼ cup white sugar 1 teaspoon vanilla 1 egg ½ package gluten-free chocolate chips Nuts (optional) Directions: Preheat oven to 375F degrees. Mix sugars and shortening or butter until creamy. Beat in egg, then dry ingredients except chocolate chips and nuts, if using. Once smooth, add chips and nuts and roll into balls. Flatten slightly. Bake 8-10 minutes. Let cool on cookie sheets. Remove and eat or store in an airtight container. Enjoy! NOTE: You may replace the egg with egg replacer or applesauce to make them vegan. Resources: About.com: Celiac Disease and the Gluten-Free Die About.com: Don’t Let These Problems Derail Your Gluten-Free Diet Celiac.com: The Gluten-Free Diet: Curse or Cure?
  13. Hello! I've recently taken my son, aged nearly 4, to the doctor as he has been suffering for at least a year with persistent tiredness, irritability, tummy bloating, poor appetite, very waxy ears and nail ridges. In the past month he has had at least 3 infections, and seems to take longer to get over bugs than his one year old brother. I took him to the docs because he has developed dark circles under his eyes and has had several tantrums apparently caused by exhaustion, even on days when we have done relatively little exercise. Having said that, sometimes he can have a really good day and my husband and I question whether we are being paranoid by getting him tested for illness! The doctor diagnosed anaemia after I insisted on a blood test (he said anaemia was rare in non-vegetarian children like my son) and gave us iron liquid, which we have to sneak into my son's food and drinks. My mother in law is a diagnosed coeliac, so I asked about a test for that but the doctor was reluctant to do it unless my son had been on the iron liquid for two months, improved and then relapsed into anaemia. After my son had a particularly bad week I asked to be referred for a private test, which has come back negative (ttg less than 0.1, hb slightly improved from 115 to 118 after a month on supplements). The consultant we saw is checking the IgA level, which I understand can cause a false negative if it's low, but it looks like we are going to have to traumatise my son further by having another blood test to rule out wheat, dairy and egg allergies. I suppose my question is, has anyone's child had similar symptoms and tested negative on the ttg, but improved on a gluten-free diet? It is just impossible to do anything with my son sometimes as he is so irritable, and I am concerned that when he starts school in September he will be labelled a 'problem child'. He has already been referred for special needs assessment by his preschool because he does not want to join in with many activities. I am tempted to try going gluten-free anyway to see if it makes him feel better, especially as my husband (also negative on coeliac test) has many coeliac-like symptoms. Any experience, suggestions or advice very gratefully received! I'm feeling a bit at my wits end, as you can probably tell...
  14. A bit of background, very short version: (I have made other posts with the looong version) My DS (age 6) had what I thought was DH on his bum/hips/lower back. Derm said it wasn't active and come back in 6 weeks to look for changes and potentially do a biopsy. We kept feeding him gluten hoping for a flare, but low and behold it cleared up on its own almost completely. This left me stumped, frustrated, happy for his relief but confused. squirming itch, you said if it's DH it will undoubtedly return, and possibly with a vengance. So here we are: https://flic.kr/p/npNShL This is way worse than his original rash which just looked like mosquito bites. This is raised and lumpy and awful. When I laid eyes on it I felt like I had been kicked in the stomach. Then I convinced myself it was poison ivy. Until this morning when the backs of his ears were inflamed and itchy. Then I noticed a few spots on the back of one knee. Does this look like DH to you? Our 6 week follow up to the dermatologist is next week. I just called and the doctor's awesome office manager is trying to get us in on Friday.
  15. I'm off to the dermatologist with my 6 year old DS today! Wish us luck!
  16. This article originally appeared in the Spring 2013 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 01/29/2014 - Anyone diagnosed with celiac disease knows that it is almost impossible not to slip up here and there. Whether you mistakenly eat something with gluten, cross contamination or your waiter forgets to inform you that your burger is marinated with gluten, we have all been there. It usually takes me two or three days to feel better and another two or three days following that to get back to my routine after consuming a small amount of gluten. For others this process varies. Some worse, some better. A diagnosed celiac friend of mine recently finally got pregnant. She and her husband had been trying for quite some time. This sparked a question for me. What would consuming gluten would do to her unborn child, if anything? According to Amy O'Connell ( a researcher and writer with a Ph.D. and medical degree) gluten can cause problems in your unborn child. When a pregnant woman with celiac disease eats gluten the mothers villi are damaged which leads to poor nutrition and weight loss. This results in an inability to absorb calories and vitamins from food and may explain why mothers with untreated celiac disease are more likely to have a baby with a low birth weight. A report in the journal "Canadian Family Physician" explained that babies of untreated mothers with celiac disease could also be at risk for spina bifida or other neural tube defects, because the mother may have poor folic acid absorption in the gut. This isn't even taking into account the emotional effects gluten has on a mother with celiac disease. The energy loss and depression that can result from gluten consumption can be harmful to the mother and child's ability to bond which creates unneeded stress. As a new mother you have enough to worry about. There is no need to complicate things with more stress and less energy. If you are an expecting mother with celiac disease, now more than ever, watch what you eat. Make sure you don't slip up no matter how much you want that Cinnabon! Reference: http://www.livestrong.com/article/543324-can-gluten-hurt-an-unborn-baby-with-a-celiac-mother/ This article originally appeared in the Autumn 2003 edition of Celiac.com's Journal of Gluten-Sensitivity.
  17. A little history about my sweet 8-year-old daughter. She's in a medical study (unrelated to celiac, though they do test for celiac as part of the study). She's been testing positive since she was about three, via blood test. In 2009 we had her scoped at Children's Hospital here in Seattle. The biopsy came back negative and, besides a few tummy aches and some occasional constipation, has been asymptomatic. We continued on with gluten. This summer she ended up in the ER writhing around with abdominal pain. I was worried it was her appendix, which was why I took her in. They took an x-ray and said she was extremely constipated. We were given zofran and miralax and sent on our way. Fast forward to three weeks ago when she got a gnarly stomach flu. The rest of the family has recovered but she can't seem to. She's still almost constantly queasy, has a stomach ache, and is constipated if we don't keep her on a regimen of prunes and a metamucil type fiber (generic). She has also developed a goiter (which I just read can be secondary to celiac), and her doctor said she looks anemic, so she's now taking Flintstones vitamins with iron. I would've preferred something more natural but couldn't find it in time. She has an appointment next Friday with a pediatric GI doc and will be retested for celiac (though she's had at least 8 to 10 positives through this study she's in). My questions are: she stopped eating all gluten that we know of five days ago. Shouldn't she be showing at least a little improvement with symptoms by now? If she eats no gluten between now and next Friday will the test still be accurate? Thanks for any help or input! I'm so scared and don't know how to help her feel better besides what we're doing. (Oh, and out of desperation I started giving her OTC Zantac tonight to see if it helps her sore throat/acid reflux, another ongoing symptom). So overwhelmed and sad!!! ~Angie (and Claire)
  18. Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The biopsy is a small piece of tissue, such as from the inside lining of the intestine, that has been removed to look for diseases. The biopsy itself is not painful, because there are no pain-sensitive nerves inside the small intestine. An intestinal biopsy can be done in either of two ways depending on the age of the children and the tradition of the institution. Sometimes a blind biopsy procedure is performed by a biopsy capsule. This is thin flexible tube with a capsule at the tip, which has a hole and a tiny knife inside the capsule. This capsule is introduced into the intestine under fluoroscopy (X-ray) control. Alternatively, with an endoscopy the doctor can see inside the digestive tract without using an x-ray to obtain biopsies. The biopsy specimens are processed and viewed under the microscope to identify or exclude celiac disease. An important basic rule is that the biopsy should be performed safely. For a safe procedure children (and adults) should be sedated. There are two methods of sedation: unconscious (general anesthesia) and conscious sedation. During both kinds of sedation the vital parameters (heart rate, blood pressure, oxygen saturation) of patients are continuously monitored. The method of choice depends on the child. Conscious sedation is performed with two different intravenous medications. One of them is a sedative medication (e.g. Versed), which causes amnesia in 80-90% of children, and even older children do not recall the procedure. The second medication is a pain-killer type medication (e.g. Fentanyl), which further reduces the discomfort associated with the procedure. In addition, the throat is sprayed with a local anesthetic in older children, which makes the throat numb and prevents retching at the introduction of the endoscope. During general anesthesia the anesthesiologist uses sleep-gases (e.g. halothan) and intravenous medications and then places a tube into the trachea. Children are completely unconscious. This is a safer way to perform endoscopy, because the patients are fully relaxed and their airway is protected. However, the anesthesia itself has certain complications.
  19. Sorry I am new here and not sure if this has already been posted... I just got a call from my pediatrician and she said my 3 year old son's blood work came back and all the markers were positive for Celiac. She said the next step is to get a scope and biopsy done to confirm. She also suggested the whole family get tested for it. So my questions are....if all the markers are positive is the scope necessary, doesn't that tell us he has it? Can all the markers be positive and the scope come back negative? Thanks for any info you all may have!
  20. Hi there, I have just been offered a celiac test by my gp for my 3 year old but I'm sceptical she that she is suffering from this as she seems to not have the main symptoms - anyway here goes... Since infancy she has had trouble pooping - more recently up to a week or longer without going and extreme pain when she does - sometimes taking another week to get it out (crying and lying on the couch for a week) She has a raised bumpy rash on her upper arms and cheeks but it is not too visible as it has only a little redness - it is not sore or itchy at all for her. She has been moody and cries a lot which is not her normal character. She has started to lose weight but is still withing the 50% percentile (was just above, now a little under). anyway after watching her get worse over the last 12 months I finally put her on a 10 day elimination diet (sugar, eggs, dairy & gluten) not 100% but 99% or enough to see if it was food causing the issue, she had instant improvement and has been the dear wee girl we used to know. She poops every 2nd day now (unformed but not fatty). I reintroduced everything and only got a reaction from wholegrain bread - within 1 hour she was crying and had an allergy ring on her backside. - Took her to DR to get advice on how to figure out if it was wheat, additives etc and she suggested Celiac. Her cousin has the gene but no one actually has it in the family (although there are a few sensitives) Does this sound like Celiac to anyone - she suggested I let her eat whatever for the next two weeks including gluten every day until we get a blood test - started today and her rash is back and she has been very easily upset for about 90 minutes after each meal - then fine again part 2 is that I am breastfeeding a 7 month old right now who is showing the same poop every 10 days, gassy symptoms his sister did at that age (although not as bad) - should I go gluten free as well - I have heard of developmental problems occurring and I'd rather not take a wait and see approach. I doubt very much I would show positive to celiac disease as I have zero tummy trouble although... I do have ADD and endometriosis which I understand is linked.
  21. Hi I'm Emma and I'm from the uk. My 4 year old son has suspected coeliac disease, his just dropped under 0.4th percentile for weight, he has anemia, low white cell count, and persistent smelly loose BM. He also has enamel defects in his milk teeth (brown lines and the surface doesn't look quite right) is this common in a child? he also has a persistent low grade fever. His currently waking with night sweats, his so wet his hair is dripping and I have to change his PJs His bloods came back negative for coeliac but the consultant feels positive that it is coeliac disease so wants to carry out and endoscopy. My frustration is he was originally referred by the gp in February, saw the consultant at the beginning of April, we are still waiting on an appointment for the procedure. I've spoken to secretary and she said its likely to be in August. That's six months after the original referral !!! I'm wondering if other people within the Uk have had a similar wait for diagnosis of their child. Im currently speaking to the hospital PALS team. Also has anyone's child had speech sound delays along side the coeliac ? Is there a link? thank you
  22. Hi! Newbie here Where to begin...labwork for 7 yo dd came back last Friday & tested positive for celiac. Hooray! She's had gut issues since birth so we were so thankful to have a reason. Unfortunately, we started pulling her off gluten a month ago (because we didn't know any better, and she was missing too much school) while doing a food diary with her to figure out why her previously dx'd IBS was so out of control (and why her "stomach flu" wasn't going away even when all she was eating was saltine crackers & chicken broth!). So when the GI called & said she had celiac, she said we needed to put dd back on gluten & so we could have a positive biopsy. Ugh. Not thrilled, but it's my own damn fault. But she never said how much I had to give dd...I keep reading anywhere from 2-6 slice of bread a day. But I'm assuming that's for an adult. Dd is 50 lbs, and doesn't eat that much. How much gluteny food do I need to give her? Her tTG IGA ab was 42 (normal <7) if that means anything. Dd is smart too, and has already accused me of giving her gluten! Which I'm totally guilty of doing, since there's no way she'll eat it now that she knows it's what made her sick. I even offered to let her eat cinnamon rolls every night & she told me "no way!" TIA for any & all help
  23. Wondering if anyone can help me interpret the results of EMA and tTG and Gliadin antibody tests. I am living in a non-english speaking country and do not have expert advice to hand. The lab was also fairly unhelpful as they do not perform these tests regularly. I am wondering if my child has gluten sensitivity. She is a failure to thrive case (dropped from the top of the charts to the bottom over the course of a year. And she is extremely picky with solids. The results from the blood tests taken from my 2 yr old are as follows. Do they show unusual levels or are these levels quite within normal range? Antibodies to Gliadin: IgM(?) (perhaps lab made mistake and these are actually IgG?) "Weak positive" 1.15 Antibodies to Gliadin: IgA "negative" tTG IgG "borderline" 0.98 tTG IgA "negative" EMA IgG "borderline" 1.09 EMA IgA "negative" I wasn't initially worried by these findings until the lab told me that the refence values for these tests were 0. That is to say that there should not be antibodies present at all. Is this really true? What I read on the internet seems to indicate otherwise. Any help much appreciated! Thanks. Nikoletta
  24. I would like to find a child close to my daughter's age (11 1/2) who also has Celiacs. I feel it would good to be able to talk to someone her own age with the same issues she has to go through.