Always an issue for GFCF families, where can we go to eat out? This is more a part of our lifestyle than many of us care to admit. Who doesn't look to the odd pizza or burger for the last minute dinner? Even if there is just one of you in the family who cannot eat GFCF, the eating-out or bring-home meal becomes a problem. For eating in, there are several companies that make "fast food" that stay in your freezer. Ian's is one such company, with chicken nuggets, fish sticks and french bread pizzas on offer. Whole Foods carries their range, but so do a host of local health food shops, the better ones will order the food in for you.
Eating out remains a more complicated business. These days restaurants are taking people's allergies more seriously, after all people are customers and customers are profit. So although there are several eateries that now publish their own allergen lists, and there are gluten and even gfcf listings out there, it is still vital to check with individual places, even among chain restaurants, with the manager about your concerns. For example, Denny's is said to cook their fries in a dedicated chip fryer, uncontaminated by other products. But several people have found on ringing their local Denny's, that it may not necessarily be the practice in that particular restaurant. The final word?
Eating out gfcf style is possible, but checking before you go is a must!
Helpful guide - as ever a work in progress:
http://gfcfrecipes.blogspot.com/2008/01/gfcf-restaurant-guide.html
Wednesday, July 21, 2010
Thursday, May 27, 2010
TO SPRAY OR NOT TO SPRAY?
This is an example of how there are times when what you really need to know is not what's on the label, but what isn't. An autistic child with a highly sensitive reaction to local conditions was liable to sneeze uncontrollably to the point of a bloody nose and sore throat. The doctor prescribed Flonase (Fluticasone Propionate Nasal Spray made by Glaxo Smith Kline) which appeared to solve the problem. However this child was on a GFCF diet, and the mother noticed within two days a typical gluten reaction, a "drunk" effect that left the child unable to focus and constantly chattering to himself. He had to be removed from his school classroom. There had been no change to his diet, only the use of Flonase. The mother decided to ring the laboratory making the product (Roxane Laboratories,Columbus, Ohio), and ask about the possible presence of gluten/casein. The answer she received was that it was the company's 'legal obligation' to say that there was no gluten evident in the spray. The researcher talking to the parent had no idea what casein was.
But here's the thing: where there is alcohol present - as there is in this spray - there must be a question over the presence of gluten. The parent took away the medication and within 48 hours the child began to return to normal, although his seasonal allergies were still evident. The parent found that Singulair that had also been prescribed at the same time, and which is gluten-free, was effective enough by itself.
What was strange was that on researching celiac forums, the parent found that other people - celiac sufferers - had questioned and dismissed Flonase as a source of gluten, having been told the same thing by researchers at the laboratory that makes Flonase. The problem with labelling is that manufacturers are not under any obligation to reveal trace amounts of a substance, let alone have to provide the consumer with substances that may have been used in the preserving, treating or binding of its ingredients. For gluten/casein allergic sufferers, this can make the difference. At the very least, with the presence of phenylethyl alcohol, there has to be at least some investigative research into how this element does not trigger the gluten flag by the company, so that they can tell consumers the truth as opposed to the legal version of the truth.
But here's the thing: where there is alcohol present - as there is in this spray - there must be a question over the presence of gluten. The parent took away the medication and within 48 hours the child began to return to normal, although his seasonal allergies were still evident. The parent found that Singulair that had also been prescribed at the same time, and which is gluten-free, was effective enough by itself.
What was strange was that on researching celiac forums, the parent found that other people - celiac sufferers - had questioned and dismissed Flonase as a source of gluten, having been told the same thing by researchers at the laboratory that makes Flonase. The problem with labelling is that manufacturers are not under any obligation to reveal trace amounts of a substance, let alone have to provide the consumer with substances that may have been used in the preserving, treating or binding of its ingredients. For gluten/casein allergic sufferers, this can make the difference. At the very least, with the presence of phenylethyl alcohol, there has to be at least some investigative research into how this element does not trigger the gluten flag by the company, so that they can tell consumers the truth as opposed to the legal version of the truth.
Monday, February 22, 2010
"Expert" advice on the GFCF diet?
What do you think of this? A leading medical man on a respected website:
http://www.mayoclin ic.com/health/ autism-treatment /AN01519
Hmm...I beg to differ. Surely any expert on a subject must empower themselves with evidence, either statistical or anecdotal, from both sides of the argument. Making a blanket policy statement about diet is so misleading and unhelpful to parents needing to find the right way forward for their child. It may not help but it MAY.
At the end of the day, those of us who look after a child with special needs 24/7 including everything that enters their mouths, are the real experts. Doctors are mechanics of the body, but we are the specialists, and the data I have collected from my own child is more than enough proof to me and to the many people that help care for him that he is severely allergic to gluten and casein. Maybe the medical industry just hasn't developed the right means to show an allergic reaction in an autistic child, just as testing of IQ meant that without a verbal answer to a question, a silent autistic child was deemed to be mentally subnormal. All I know is that after seven years of terrible bowel movements, within a week of being GFCF my son's diarrhea stopped completely. Seven years to nothing. Within a week. What is that if it is not a measurable allergic reaction?
But sure. Bring on the high fructose corn syrup, the trans fats, red 40, blue 6, yellow 1...give them all that good stuff on a normal diet that the rest of America is doing so well on.
http://www.mayoclin ic.com/health/ autism-treatment /AN01519
Hmm...I beg to differ. Surely any expert on a subject must empower themselves with evidence, either statistical or anecdotal, from both sides of the argument. Making a blanket policy statement about diet is so misleading and unhelpful to parents needing to find the right way forward for their child. It may not help but it MAY.
At the end of the day, those of us who look after a child with special needs 24/7 including everything that enters their mouths, are the real experts. Doctors are mechanics of the body, but we are the specialists, and the data I have collected from my own child is more than enough proof to me and to the many people that help care for him that he is severely allergic to gluten and casein. Maybe the medical industry just hasn't developed the right means to show an allergic reaction in an autistic child, just as testing of IQ meant that without a verbal answer to a question, a silent autistic child was deemed to be mentally subnormal. All I know is that after seven years of terrible bowel movements, within a week of being GFCF my son's diarrhea stopped completely. Seven years to nothing. Within a week. What is that if it is not a measurable allergic reaction?
But sure. Bring on the high fructose corn syrup, the trans fats, red 40, blue 6, yellow 1...give them all that good stuff on a normal diet that the rest of America is doing so well on.
Saturday, January 9, 2010
AUTISM: THE ULTIMATE ALLERGY?
We keep hearing about how allergies are on the increase. Allergies to dust, pollen, pets, grass, seasons, even the sun – the source of all life. Allergies to food are even greater, and more numerous, especially among children. Shift the focus to autism for a moment: Typically when children are diagnosed as such, the doctors will tell you that it is because their behavior displays a set of characteristics that match those of people on the Spectrum of Autistic Disorders (or ASD). These include but are not limited to hand-wringing, running up and down, lack of sustained eye contact, not turning to their name, making inappropriate noises and not using language at all. But there appears to be less interest in factors such as continuous diarrhea, consumption of non-food items, such as glue, stickers and that kid-friendly modeling dough. Children’s’ gut problems are often labeled “toddlers’ diarrhea”, or IBS in children, and parents are told that their child will grow out of it. Rather than looking for a possible link between autism and allergic reaction, research appears to focus on genetic causes. For instance, the medical world has hailed the revelation that children with autism often develop normally until 9 months or even up to age 2, and then appear to regress and deteriorate - regardless of whether or not the MMR vaccination is involved. Then there is the theory that children with autism are born with unusually small heads, and by the end of the first year of life, their head size has increased to be unusually large. This rapid head growth is a factor in the onset or appearance of subsequent autistic characteristics. But these determinations still only apply to approximately 10% of children on the spectrum.
Meanwhile it is becoming more apparent that an increasing number of children are allergic to some food product or another. Eggs, milk, soy, corn, chocolate, nuts, even celery. Reactions to these products vary from mild rash to stomach ache to anaphylactic shock that can kill. Newsweek addressed the issue of the growing allergy problem among our children (11/05/07). Approximately 11 million Americans suffer from one allergy or another, with most scientists agreeing that the numbers are climbing. Newsweek concentrated on the “hygiene hypothesis”, that says we have made our world too clean for children to cope with even the mildest bacterial obstacles. But as one reader pointed out in her response letter, it was surprising that the article never mentioned the link between food allergies and special education needs, specifically gluten and autism. The writer was a teacher who said it’s not a question of wanting to know, people in education NEED to know. Another respondent was intrigued that genetically modified foods didn’t come under the magazine’s microscope. How can we not see a link between what we do to our food chain and our environment, and the rising number of allergy sufferers?
If we are indeed dealing with an allergy epidemic, are we talking also about ADHD, and who knows how many other conditions that have so far usually been medicated rather than diet-challenged? Taking an even broader look at what we have done to our environment in say, just the last twenty years, we see a corresponding rise in brain diseases and nervous afflictions. Cancers of all kinds, Parkinsons, Alzheimers – the medical conundrums of our day. Can it really be coincidence or is it just possible that the human body has more allergic reactions to poisons than we have realized? These are the pressing questions that appear to deserve time and attention from the medical research community, who seem focused on finding the genetic link to autism and other conditions above all else.
Meanwhile it is becoming more apparent that an increasing number of children are allergic to some food product or another. Eggs, milk, soy, corn, chocolate, nuts, even celery. Reactions to these products vary from mild rash to stomach ache to anaphylactic shock that can kill. Newsweek addressed the issue of the growing allergy problem among our children (11/05/07). Approximately 11 million Americans suffer from one allergy or another, with most scientists agreeing that the numbers are climbing. Newsweek concentrated on the “hygiene hypothesis”, that says we have made our world too clean for children to cope with even the mildest bacterial obstacles. But as one reader pointed out in her response letter, it was surprising that the article never mentioned the link between food allergies and special education needs, specifically gluten and autism. The writer was a teacher who said it’s not a question of wanting to know, people in education NEED to know. Another respondent was intrigued that genetically modified foods didn’t come under the magazine’s microscope. How can we not see a link between what we do to our food chain and our environment, and the rising number of allergy sufferers?
If we are indeed dealing with an allergy epidemic, are we talking also about ADHD, and who knows how many other conditions that have so far usually been medicated rather than diet-challenged? Taking an even broader look at what we have done to our environment in say, just the last twenty years, we see a corresponding rise in brain diseases and nervous afflictions. Cancers of all kinds, Parkinsons, Alzheimers – the medical conundrums of our day. Can it really be coincidence or is it just possible that the human body has more allergic reactions to poisons than we have realized? These are the pressing questions that appear to deserve time and attention from the medical research community, who seem focused on finding the genetic link to autism and other conditions above all else.
THE GLUTEN-FREE CASEIN-FREE ALTERNATIVE LIFESTYLE.
Over time it has become apparent that being gluten and casein-free really isn’t just a diet. There are so many elements in our now highly-polluted and genetically-altered environment that the parent of a child that needs to be kept away from gluten and casein has a much bigger job on their hands than merely dealing with food and drink. The second biggest concern with the regime is misunderstanding. Parents time and again report that they tried a modified version of gfcf living. Unfortunately this is not possible. What research there is shows that the gfcf diet – for want of a better term – is an all or nothing deal. You either do it or you don’t. There are no half measures. Ingesting one goldfish cracker can make an autistic child stim for three days. However, the good news is that once you can incorporate these ideas into your own thinking and lifestyle, it can become second nature – like anything else. And the results can be immediate and drastic.
Another parental biggie is the notion that we are running out of time. We are always racing the clock to find ways to unlock our child from their world, to help them make connections to talk and laugh and make normal social conversation. To some extent, it is important to let go of this feeling of urgency. A lot of research states that you have a window of opportunity to break through to your child, and we are all desperately trying different techniques, diets and therapies to achieve this. The nature of autism of course, means that one family’s success may be another family’s failure. But one thing is for sure: it is vital that we throw out the labels, we rid ourselves of the time frame, and we work with what we know and we go with what works for our own child. To that end, gluten and casein will not be a factor in every child’s autism, but it will be in some. There is no harm in trying the lifestyle, and if it works, it brings a whole new quality and purpose to the life of the child and the family that loves them.
Another parental biggie is the notion that we are running out of time. We are always racing the clock to find ways to unlock our child from their world, to help them make connections to talk and laugh and make normal social conversation. To some extent, it is important to let go of this feeling of urgency. A lot of research states that you have a window of opportunity to break through to your child, and we are all desperately trying different techniques, diets and therapies to achieve this. The nature of autism of course, means that one family’s success may be another family’s failure. But one thing is for sure: it is vital that we throw out the labels, we rid ourselves of the time frame, and we work with what we know and we go with what works for our own child. To that end, gluten and casein will not be a factor in every child’s autism, but it will be in some. There is no harm in trying the lifestyle, and if it works, it brings a whole new quality and purpose to the life of the child and the family that loves them.
THE SURVIVAL INSTINCT
Today researchers are trying to diagnose autism as early as babyhood, in an effort to reach the brain at its most malleable state. The idea is to completely re-engineer the brain and “re-wire” the child so that they are able ultimately to function socially at much higher levels than autism normally allows. GFCF admin has spoken to a number of mothers who noticed that right from the start, their babies did not want to nurse. If we accept that gluten and casein allergies are a factor in a significant number of autistic people, then this occurrence should be seen not as incidental or coincidental, but as startling and revealing evidence to be taken into consideration with other aspects that match the Autism Spectrum Disorder (ASD) criteria. Until now, it is not an advertised fact anywhere that babies CAN be allergic to human breast milk. We have all heard of allergies to cow’s milk, where many babies are put onto soy formula. But human breast milk is thought of as the best of the best, nothing is stronger than the survival instinct and the natural drive of the new-born infant to search out the sustenance from its mother. Doctors therefore believe that it is the mother who is at fault, who is unsuccessful in her attempt to breast-feed, when the baby seems to turn its head away and scream. Two facts for you: first, human breast milk contains casein. Second, many people - as we know - are allergic to casein, causing the increase of autistic "stimming" and other symptoms. Rather than beating themselves up about their inability to feed their child, professionals and researchers as well as parents, should be looking for signs of ASD - the allergic reaction to breast milk has surely got to be one of the first vital symptoms of a child with possible autism.
IS IT DAIRY-FREE?
Sometimes when we are reading food labels, we think that what the label says must mean what we think it means. Not so! Be aware that when a product is labeled dairy-free, it does not mean it is necessarily casein-free. Of course you’d think the easiest solution is to call the 1-800 manufacturer’s number on the side of the item, but you’d be surprised how often they don’t know what you’re talking about. Often they make the same mistake as the consumer - surely dairy-free means no casein. Casein is a milk protein that can be separated and used apart from the milk it has come from, and is used in a staggering number of products that you would not normally associate with a dairy protein. Casein is used in everything from adhesives and emulsions to plastics and of course, food. When casein is used in a non-dairy product, there is no legal obligation for the manufacturer to state the presence of the milk protein, as it is considered a trace amount - and therein lies the problem. No need to label trace amounts means a problem for casein allergy sufferers. Indeed TACA states that casein “is a term the dairy industry invented to indicate less than 1/2 % milk by weight, which could mean fully as much casein as whole milk”.
Here are some other names that casein - or a substance which contains casein - goes by on food labels:
whey, curds, sodium caseinate, hydrolyzed vegetable protein, lactose (sodium lactylate), lactalbumin, galactose, hydrolized caseinate.
There are new substances containing whey or one of the above coming onto the market all the time. Only by asking the question “Does this contain casein?”, will we receive the right up-to-date and accurate information from the consumer’s - and not the marketer’s or manufacturer’s - point of view.
Here are some other names that casein - or a substance which contains casein - goes by on food labels:
whey, curds, sodium caseinate, hydrolyzed vegetable protein, lactose (sodium lactylate), lactalbumin, galactose, hydrolized caseinate.
There are new substances containing whey or one of the above coming onto the market all the time. Only by asking the question “Does this contain casein?”, will we receive the right up-to-date and accurate information from the consumer’s - and not the marketer’s or manufacturer’s - point of view.
WHAT HAPPENS WHEN THERE IS A SETBACK?
Someone who contacted gfcfadmin wanted to know what could be done for a child who had mistakenly ingested gluten/casein while on a gluten-free casein-free diet. The child in question had been gfcf for over a year and was making tremendous progress in all social, academic and motor skill areas, and his digestive system had been healing nicely. Suddenly one meal of gluten/casein, and they saw the diarrhoea come back, all focus on schoolwork was lost, the child was acting giggly and was unable to sit in a chair, stimming increased to pre-diet levels overnight. The teachers could only describe it as a “drunk” reaction, which is exactly what gluten/casein does to some autistic brains - has an opiate or alcoholic effect. The child had to be removed from his regular classroom setting to a special day class, upsetting to both child and parents. Well there is something that can immediately be done without resorting to chemical intervention. According to a Board Certified Pediatrician and Specialist in Medical and Environmental Aspects of Autism, there are enzymes available that help to “absorb” and neutralize the contaminants. One enzyme in particular covers a whole panacea of carb allergic reactions, and it’s name is…wait for it and get your pencils…EnZym-Complete/DPP-IV. This enzyme is available to order from many websites direct to your door, often within 1 day. Its effect can be immediate too, but usually there is a positive result within 48-72 hours depending on the amount of gluten/casein in the system. When all else has failed, and every specialist in your child’s life is at a loss for what to do, don’t think chemicals. There is more and more research on the Bio-Medical intervention that can help support children through these difficult patches. If this is something that has happened to you, check it out!
CAN WE BE TOTALLY GLUTEN AND CASEIN FREE?
When people talk about being gluten and casein free, they often will follow this by saying that they are doing a modified form of the diet. As mentioned in another post, there is no such thing. And it is not just a diet. Gluten is found in just about every adhesive, thickener, and preserved product there is. Casein is even more wide-spread - virtually every paint, plastic and emulsion relies on the dairy protein. If indeed these two elements are around us in every shape and form, how is it possible to consider ourselves totally gluten and casein free? Well at this point in the 21st century, it is pretty impossible to say that we are really free of anything. How can you prevent cross-contamination of GM crops with non GM ones, for example? The wind carrries seed to anywhere it wants to go in microscopic amounts. Human beings cannot prevent that. Similarly, we cannot prevent our children from living with gluten and casein in their world and possibly in their immediate environment. What we can control is what they eat and what they touch. There is a vast chasm between what our children experience in the world around them and what they experience directly.
There is no modification or compromise that can make the gfcf diet successful except sticking to the rules of no gluten, no casein. So you cannot possibly take out regular bread but allow a take-out pizza once in a while. Or ban dairy from the house, but let an ice-cream trip happen for a special treat. To this extent, we can control and regulate the amount of gluten or casein our children are exposed to. It may not matter for a gluten-casein sensitive child to be around other children that are playing with stickers, but it may be what makes the difference for that child not to put a sticker on their own skin. For many, this is enough to make a huge difference to the degree of stimming, lack of focus, sense of drunkeness and ability to converse and be engaged that parents and children alike are looking for.
There is no modification or compromise that can make the gfcf diet successful except sticking to the rules of no gluten, no casein. So you cannot possibly take out regular bread but allow a take-out pizza once in a while. Or ban dairy from the house, but let an ice-cream trip happen for a special treat. To this extent, we can control and regulate the amount of gluten or casein our children are exposed to. It may not matter for a gluten-casein sensitive child to be around other children that are playing with stickers, but it may be what makes the difference for that child not to put a sticker on their own skin. For many, this is enough to make a huge difference to the degree of stimming, lack of focus, sense of drunkeness and ability to converse and be engaged that parents and children alike are looking for.
About this GFCF blog
Using technology to keep life simple
The idea for this blog came from a direct need to know if food or drink items contained gluten (a wheat protein) or casein (a dairy protein). It soon became clear that gluten and casein were present not just in food, but in almost every aspect of our environment. New research comes out daily, often conflicting, often confusing, that can leave the GFCF newcomer more than a little frustrated.
Surfing the web yields some answers, but many times does not. Parents of autistic children who are considering trying a GFCF lifestyle will hopefully be encouraged by the information they find here. It is not impossible to go GFCF! We tend to think that all GFCF products have to come from expensive stores, but actually this is not true. Of course you can buy at these places if you want to, and there are several companies out there who provide the perfect snack or meal on the go so that your child can join in with a field trip, or an outdoors birthday party - and the emergency meal from the freezer! But in addition to this, the GFCF lifestyle can be so much easier if we just remember that less is more. Keeping a diet simple with foods that grow naturally, a lifestyle that uses allergen-free products for our childrens' environment, is the best place to start. However there will always be grey areas to watch out for. Hopefully you will find your answers here and if you have a question, please feel free to leave a comment. For now, have a wonderful GFCF day!
The idea for this blog came from a direct need to know if food or drink items contained gluten (a wheat protein) or casein (a dairy protein). It soon became clear that gluten and casein were present not just in food, but in almost every aspect of our environment. New research comes out daily, often conflicting, often confusing, that can leave the GFCF newcomer more than a little frustrated.
Surfing the web yields some answers, but many times does not. Parents of autistic children who are considering trying a GFCF lifestyle will hopefully be encouraged by the information they find here. It is not impossible to go GFCF! We tend to think that all GFCF products have to come from expensive stores, but actually this is not true. Of course you can buy at these places if you want to, and there are several companies out there who provide the perfect snack or meal on the go so that your child can join in with a field trip, or an outdoors birthday party - and the emergency meal from the freezer! But in addition to this, the GFCF lifestyle can be so much easier if we just remember that less is more. Keeping a diet simple with foods that grow naturally, a lifestyle that uses allergen-free products for our childrens' environment, is the best place to start. However there will always be grey areas to watch out for. Hopefully you will find your answers here and if you have a question, please feel free to leave a comment. For now, have a wonderful GFCF day!
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