Advice
Very Informative Interview with UK Resident on Autism, Gluten, Books and More – Vicky Warren Speaks Openly
1. Tell me about you and your background and how you are involved in the area of gluten-free, autism etc.
I used to be a nurse and midwife before David and I got married in 1969 – we then went on to have 5 daughters between 1972 and 82! I first became aware of having difficulties in digesting wheat within 24 hours of giving birth to Naomi my oldest daughter in 1972, and with each successive child birth the problem got worse, eventually leading to my doctor sending me to hospital for allergy tests, which proved nothing!! It wasn’t until my 4th daughter was born in 1978 that I finally got round to doing an exclusion diet and guess what my symptoms disappeared! Since then I have been wheat free and since 1998 I have been totally gluten free. Unfortunately since going down with *ME/CFS (Alternate names/abbreviations for chronic fatigue syndrome) 2002 I have had to deal with a lot of food allergies and exclusion is always the best way to deal with it, but I have discovered that quite a lot of these allergies/intolerances are transient which is quite interesting so my diet goes up and down as to what I can and can’t eat – but gluten is always a complete no no.
When Naomi my oldest daughter was diagnosed with being on the Autistic Spectrum at the age of 28 in 2000 she was completely addicted to all wheat products! At her new autism specific residential home they even in 2000 knew that gluten could effect the severity of the autism and so Naomi was put on a gluten reduction diet which she keeps to even now 10 years on. Her health has vastly improved with her carers being brilliantly observant to her dietary needs and how it effects her autism.
2. Tell me a bit about being a professional interviewer – what does it entail?
Am I a professional interviewer? That is a moot point because many times I have been told that as an amateur and a voluntary worker that my interviews are quite often better than the professionals and in the fact that I get a lot more information from my interviewees by being more conversational. But I have to act as professional as I can even though I am the amateur!
3. I’m intrigued by the fact that you created programs for hospital radios, please explain what this entails.
Here in Britain we have had hospital radio run by volunteers for many decades. I became involved with my local hospital radio in 1985 and because I was much older than the other people there I decided to carve myself out a niche of doing interviews with celebrities and book authors! In 1986 I was doing so many, that myself and another hospital radio volunteer started up a charity called H.O.P.E. – Hospital Oriented Programme Enterprises and made programmes for hospitals around Britain. I also roped in students from a local university and both my husband David and I taught them how to do old style cut and splice tape editing and good quality interviews. It was a great deal of fun and even my kids got in on the act!!
4. What does BFK stand for? Can you share some details about this, please?
BFK stands for Book Fiends Kingdom – people who love to read books, but because people kept getting it confused with Friends instead of Fiends I shortened the title to BFK – and it grew until now we have www.bfkbooks.com, www.bfkautism.com, www.bfkmusic.com and www.bfkdvd.com the BFK family of websites to cater for most tastes.
5. Please provide details you’d like to share about YOUR mission for these sites.
My original website www.bfkbooks.com came into being in 2007 to Raise Awareness and Funds for the Care of Adults with Autism because Naomi read voraciously before she became Special Needs, the website was set up in honour of her reading and her many interests. I would like all the websites to grow and raise funds to help adults with autism. At the moment we are helping the Disabilities Trust’s Adult Autism Specific Services but the more money we can raise the more people we can help.
6. What particular circumstance inspired you to create your sites?
Naomi being diagnosed in 2000 at the age of 28 with being on the Autistic Spectrum. Once she was settled in a good Autism Specific Residential Home run by the Disabilities Trust in 2000 it gave our family a chance to heal emotionally and physically. In 2006 I felt I was healed enough to begin to give back to the people who had cared so much for Naomi so she become my inspiration for setting up all the websites.
7. If you could share 1 key piece of advice with parents that are raising an autistic child, what would it be?
Raising an autistic child is one of the hardest things to do because you have to forget self and become like a Rottweiler to fight for the right kind of care for your child. My advice for all the parents in this position is to take time out for themselves, even if it’s to just stand in the garden and listen to the birds singing. Parents are so tired with all the battling they do that they quite often become ill so taking time out is a necessity. Here’s an article written by Anna Van De Post on Coping http://www.bfkautism.com/articles-on-autism/coping-by-anna-van-de-post Anna is a mum here in England who’s autistic son is now 17 and who has gone through a lot of trials and tribulations in trying to cope – I asked her to share her experiences in this article.
8. Any particular touching memory or experience that you would like to share about your daughter and her progress which may help others?
When Naomi went to Hollyrood the adult autism specific residential home she was very ill and in crisis – as one would expect she completely lost her ability to talk, laugh and write which she loved to do. Over the decade she has been there and now in a community home, her talking has come back and so has her humour – which is quite wicked at times! She can now write the odd poem or two but I think most importantly she can now express what she is feeling much more coherently. These changes have not come overnight but piecemeal throughout the decade. We find we can now take her out to restaurants, to the Blue Bell Railway (steam engines) and she came to her middle sister’s wedding 2 years ago and will be going to her 4th sister’s wedding in July this year. When we look back over the last 10 years so much has happened and now she is a completely different person to who she was when she went through the front door of Hollyrood in 2000.
9. As a child, did your daughter stick to a specific vitamin regimen or anything else in particular as regards nutrition or diet? If so, is this still the case?
As a child we thought Naomi was eccentric but normal – so she ate normally in keeping with the rest of the family. Now she is on a good diet with no supplements other than horse chestnut for her varicose veins.
10. How might one have a glimpse into the life of an autistic person such as your daughter, to read a bit more into their true story(ies)? Any blogs or resources that you care to share?
I’ve recently started a rolling news on Naomi http://www.bfkautism.com/content/news-on-naomi and an overview of her life http://www.bfkautism.com/content/naomi with more info to go on. I’ve also started with another mum Heather on her son Josh http://www.bfkautism.com/content/heather-and-josh and http://www.bfkautism.com/content/news-on-heather-and-josh . In a few weeks another mum Anna will be talking about a group of mums and will have a rolling news on them as well.
I also highly recommend the www.autismfile.com which does a lot of campaigning for the rights of children with autism and their need for good medical treatment and care.
In America there are so many fantastic websites which I Googled and have been left feeling quite inspired by them.
Last but not least http://www.autism-awareness.org.uk/ which is run by the Disabilities Trust – their standards of care are second to none.
For resources – this is where Google comes into its own. Each country is very different but in the future for my autism website maybe a generic resources article that will take on board the needs of the autistic people of that country. Dr Andrew Wakefield has a website www.callous-disregard.com and in the links page are many associations and societies that can help people in many ways – from wills to how to get the best health treatment for your child.
11. You have taken on the honorable task of shedding light on a portion of our society that largely goes un-noticed: adults with autism. Please explain the variety of ways that you help this population.
I am slowly building up on articles on the autism website talking about the different aspects of adults with autism. I also do a lot of talking on the ground and always carry leaflets explaining what autism is. You never know who you may meet standing on a train station platform or bus queue! At least 50% of the people working with me are on the autistic spectrum but at the high end of it. Trying to educate people about adults with autism are the forgotten people and tweeting of course!! I also try to mentor some adults with autism as well.
12. With all of the various “hats” that you wear, I can see that you’re a very busy woman! What is a typical day with “Vicky” like?
Gosh – now you’re making me think, because everyday is different depending on what I’m doing! In the morning it’s reading my emails, making phone calls to sort out interviews for the websites. After lunch I do a lot of my review posting across 3 of the websites and sorting out articles for the autism one and making new contacts for the articles on autism. Walking the dog and when things get too overwhelming on the website front I take to my sewing machine and make quilts or do lace knitting!
I also have to make time for reading books on all subjects for the interviews, have days when I go out to meet people either interviewing them for the websites or talking about the autism side. Believe it or not the London Book Fair is a great place to talk about Adults with Autism!
All of the above is done with a background of medical appointments for David’s chronic lung disease – he has Granular Sarcoidosis of the Lungs and I have Diabetes and am on Insulin as well as having ME/CFS! As well as that we have regular review meetings with Naomi’s carers and see Naomi on a regular basis along with her sisters.
13. What role does a gluten-free diet play in the lives of people that are living with autism?
From my own personal experience of going gluten free and that of Naomi (my autistic daughter) is that for me I am not grumpy! Add a bit of gluten and even my friends and family will pick up on it. For Naomi – her autism is much, much better and instead of needing 3-1 care she now only needs 1-1 care. Being gluten free does make the autism less severe – it never goes away but becomes more manageable.
14. You shared with me the immense cravings your daughter has for some specific foods which are not beneficial to her. What can you share about this with other parents of autistic adults or children?
Having an immense food craving can mean that the person is addicted to what they are eating, but weaning the person off of the offending food is not easy and has to be done in small stages. I remember how grumpy and angry Naomi was in the beginning but the effort was worth it to see how she has progressed. I know that between us – the parents – and Naomi’s carers a lot of thought was put into how to do everything. Take it slow and find a substitute like gluten free bread and biscuits – look for food that has maize, corn or rice in the ingredients – if soya is tolerated or spelt flour also gram flour and buckwheat flour which is great for all sorts of cooking. Even now we keep a look out for things like corn pasta and spaghetti and for you Tina, your gluten free website is just brilliant.
15. Please share some of the GF resources that you would typically suggest to both children and adults with autism.
Our supermarkets here in Britain are now building up on their Free From produce and our good health food shops are very good as well. In America I know that your health food shops are very good and even in 2002 when I was last in America there was a lot I could eat without feeling hard done by.
There are now lots of books published on gluten free cooking which can be bought from www.amazon.com and www.amazon.co.uk.
16. Do you personally have any statistical information that sheds light on the differences and successes between an autistic person eating a non-GF diet as compared to a GF diet?
I personally don’t have any stats on this, only personal anecdotal info, but I know that in America some of the doctors dealing with autism are very aware that autism and gluten really don’t mix and there is some research going on there.
17. If anyone cared to make a donation to the BFK Autism website, how might they do so?
For any donations, go to www.justgiving.com/BFKautism. This is the link to the Just Giving charity which was set up many years ago to collect money for charities from marathons or events and pass it on to the relevant charity – in my case the Disabilities Trust Adult Autism Services. All donations bypass me and go straight to the Disabilities Trust
18. What are the funds and donations used for?
All the funds and donations are used to help with the facilities for adults with autism, e.g music centre with instruments, sensory room, multi media raised gardening beds, art – paints, paper, clay etc, pottery room – all the adults love going here and much, much more. There is so much but these are just a few things that the money goes towards helping the adult with autism progress – I certainly know that all of this creative care was instrumental in bringing Naomi out of her severe autistic crisis.
19. Your love of reading shines through on your BFK Books website. What book(s) are you reading currently as well as interested in?
Ooh – where do I start! These are just a very select few right across the board:
The Red Velvet Turnshoe by Cassandra Clark – an historical crime novel set in the late 1400s – she’s a brilliant writer.
The Holy Man and The Holy Man’s Journal by Susan Trott – Two beautiful novels that are very spiritual and dare I say it healing to read.
Fear The Worst by Linwood Barclay audio book – crime story read by Jeff Harding – had to send a friend into the garden whilst I finished the disc I was listening to! It is just brilliant and addictive listening!
The Mummy Snatcher of Memphis – by Natasha Narayan – a very well researched children’s book set in Victoria times – a good rollicking adventure – loved it.
Horrid Henry audio books are the best stress busters ever – these are officially children’s books but parents will get a great deal of fun from them as well!
Praise of Folly by Desiderius Erasmus – translated by Roger Clarke – this book was first published in 1511 – a classic published by Oneworld Classics. Desiderius pokes fun at the establishment and I have to say – nothing has changed at all!
I Heard the Owl Call my Name by Margaret Craven – an extraordinary book of how a dying priest is sent to the wilds of British Columbia to work with the indigenous people. Loved it.
Callous Disregard by Dr Andrew Wakefield – can only be bought in America on www.amazon.com tells the true story of what happened with the MMR vaccine and the GMC. Quite an eye opener of a book with loads of info.
Stradivari – this is about the violin and how it is made – it is a very sumptuous book with lots of pictures!
20. How many author interviews do you personally conduct in a year (average)?
Approximately 30 plus – can’t believe that but we do a lot!
21. You’re providing a tremendous service by shining the spotlight on these authors, do you have any success stories to share from any of the individuals you’ve interviewed?
Ian Rankin who wrote the Rebus books – I interviewed back in the early 90s on his very first book and he has become a huge success! I was able to do a catch-up interview with him a couple of years ago.
Terry Pratchett – way back in 1992 when I interviewed him – he’s huge now with his discworld series and now TV specials.
Philip Reeves and his Mortal Engine series – teenage books that are so creative and set in the Victorian era.
22. I see that you have also created the BFK Music and DVD site. They look terrific! What types of music and DVD genres can one expect to find?
With the music website we’ll be reviewing all sorts of music – from Glee to Queen – and all in between. I love Southern Gospel music and folk so they are my areas; Gareth loves classic rock and the classics, whilst Riff who’s just joined us will be doing Be Bop and jazz.
DVD genres: all sorts both modern and classic with a look at the world cinema genre as well.
23. In terms of the DVD site, do you only review contemporary or “new releases”? Or do you include the classics also?
We review both latest releases, but I think well be specializing in some much older films – everything from the big musicals and the old classic 40s and 50s films, to Avatar and all in between. We’ve also been taking a look at all the old TV classics too.
24. Please share the name of the last DVD you reviewed and a bit about it? What was your favorite part in this DVD??
Last DVD reviewed but not posted yet is a world cinema film called Riding Alone for Thousands of Miles – a Chinese film about a man who on hearing that his son is dying, rushes to his son’s bedside but his son doesn’t want to see him. His son’s wife gives him a film to watch so he can get to know his son – a promise on the video sends the father on a journey into the heartland of China to film a very special folk dancer. Along the way he meets so many different people and films them.
This is a beautifully shot film that is slow in its build-up but so satisfying. When you come to the end you really feel you have been on a journey with the father. I more than highly recommend this film.
Avatar – a brilliant film that translates to the small screen exceptionally well.
25. Do you work with a team of book/music/DVD reviewers? If so, how many?
I do work with a team of reviewers – there are about 8 of us right across the board but I guess most of us do book reviews as well!
26. Where do you reside?
I live in England (Britain); always have – so everyone lives local to me here.
27. Do you sell advertising space at any of your sites? If not, please explain why.
My webmaster and I made a decision at the beginning not to sell advertising space because it just clutters everything up and doesn’t look good. This is not set in stone and may change in the future.
28. If you provide a newsletter or a way to subscribe to receive updates on new reviews and interviews, how might one subscribe to this?
This is something we are looking at – we do have a Feeds free subscription bit which came into being in March 2010 but I have to say I haven’t really used it yet – this is part of our build-up on the websites and does take some getting used to as it’s based on us inputting into the news several times a week which at the moment I haven’t done. So thank you for reminding me to be a bit more proactive on this one.
29. Now let’s talk about the direction that you’re heading with your cause, what is your vision or long-range plan?
Wow – the big 4 way split in March was one of our long range plans that happened sooner than expected. With the book, DVD and music websites it is a case of providing good quality reviews, interviews and articles such as Spotlight and of course building up on the news side. We will be encouraging more autistic adults to join us with their personal reviews that we can post on the websites and in some cases write their own experiences of how they cope with being on the autistic spectrum..
The autism website because it is so different it is still evolving but I foresee it as an all encompassing site with source info, articles and interviews all in the autism genre. I do have a scientist who is about to come on board. I’d like to see more personal anecdotal stories from parents around the world – so we can build up a picture of how each country is helping or not the parents with autistic children and adults.
I would like to raise a lot of money so that the Disabilities Trust can have a drop in centre for young adults to get diagnosed and have specialized counseling and also for some outreach workers who can go to families caring for autistic children and need help and support. Once we have the prototype then it can be rolled out across the country, but this takes time to be refined and honed locally to Hollyrood in England.
I would also like to be properly sponsored for the websites – paying my webmaster would be good etc!
Education is so important but education for parents so that they know their rights in getting the right kind of help for their children and how to do it.
30. Do you have plans to create more programs in the future?
Yes – these will evolve as more people join us and new ideas are brought forth.
31. Any other specific plans for expansion we can look forward to?
That happened in March and will evolve, refine and hone as we go along, and as website life goes on new ideas come in and I would expect us to expand but how – I think I just need to get over this expansion first!
32. And my last question – Please share one piece of advice you’d like others to read and really understand, taking this advice straight from Vicky’s heart!
The Dalai Lama in one of his quotes said “Never Give up” and I guess that is my mantra from my heart – because if you keep at it, it will happen – also, be like water – flow around the rock, don’t bash yourself on it thus giving yourself serious injury!
Thank you for your time and all you have shared with us, Vikki.
Tina Turbin
* ME: Myalgic means muscle pain or tenderness. Encephalomyelitis means inflammation of the brain and spinal cord. Encephalopathy means altered brain function and structure caused by diffuse brain disease. Alternate names for chronic fatigue syndrome (CFS).
Chef to Plate International Awareness Campaign
In my work as a children’s author, researcher, and humanitarian, I am always looking for ways to help people with celiac disease or who are gluten-sensitive by raising awareness and making the gluten-free diet easier to maintain. Therefore, I’m incredibly excited to announce the Gluten Intolerance Group of North America’s 2010 campaign, which you can find out more information about at the following link: http://gluten.net/events.php. This campaign will help to spread awareness about celiac disease and gluten intolerance by partnering up with restaurants that offer gluten-free foods.
According to GIG, the 2009 campaign was an extraordinary success, which helped people all over learn about gluten intolerance and the gluten-free diet. By partnering with GIG this year, your organization will be included under the media campaign listings as well as on their website—free of cost! When you become a sponsor, contributing toward the cost, you will get your logo featured on the literature in restaurants.
Last year, they sent out over 5,000 pieces of literature to 196 restaurants, including a number of
chain restaurants, in the U.S. and Canada, and they estimate that the campaign reached 1.6 million people alone during Celiac Awareness Month—a very impressive number!
Tina Turbin
www.GlutenFreeHelp.info
Chef to Plate International Awareness Campaign
Get Some Help, Mom!
Get your family to pitch in with chores around the house, especially the kids. Children may not be expert dishwasher loaders and you’ll always be able to do the chores better yourself, but learn to let it go and get them to help you out with some of the things they’ll be able to handle on their own, even if it’s just pairing together and folding socks. Studies show that children who participate in family chores have a higher chance of growing up more successful than other children. It will raise their feels of self-esteem, make them more competent, and it’ll give you some time to do the following energy-boosting tips.
Tina Turbin
How is Sjögren’s Syndrome Diagnosed?
There are several ways to test for Sjögren’s which I have added below, even though I have an Article on this very topic posted at the Gluten Free Help website.
I personally had the eye test done (brings back memories) and then the blood test done. I have an account with a lab and can order tests through my clinic (Karmic Health), so I will also check to see if there is a simple test that can be ordered.
So, how is Sjögren’s Syndrome diagnosed?
http://www.medicinenet.com/sjogrens_syndrome/article.htm
The diagnosis of Sjögren’s syndrome involves detecting the features of dryness of the eyes and mouth. The dryness of the eyes can be determined in the doctor’s office by testing the eye’s ability to wet a small testing paper strip placed under the eyelid (Schirmer’s test using Schirmer tear test strips). More sophisticated eye testing can be done by an eye specialist (ophthalmologist). Salivary glands can become larger and harden or become tender. Salivary-gland inflammation can be detected by radiologic nuclear medicine salivary scans. Also, the diminished ability of the salivary glands to produce saliva can be measured with salivary flow testing. The diagnosis is strongly supported by the abnormal findings of a biopsy of salivary-gland tissue.
The glands of the lower lip are often used to obtain a biopsy sample of the salivary-gland tissue in the diagnosis of Sjögren’s yndrome. The lower lip salivary-gland biopsy procedure is easily performed under local anesthesia, with the surgeon making a tiny incision on the inner part of the lower lip, to expose and remove a sample of the tiny salivary glands within.
Patients with Sjögren’s syndrome typically produce a myriad of extra antibodies against a variety of body tissues (autoantibodies). These can be detected through blood testing and include antinuclear antibodies (ANAs), which are present in nearly all patients. Typical antibodies that are found in most, but not all patients, are SS-A and SS-B antibodies, rheumatoid factor, thyroid antibodies and others. Low red blood count (anemia) and abnormal blood testing for inflammation (sedimentation rate) are seen.
Another link with a list of tests, etc.
http://www.wrongdiagnosis.com/s/sjogrens_syndrome/tests.htm
Sandi Star, CCN
You can read all about Sandi Star’s remarkable story in her 3-part article series available at the following links: Living Gluten Free – Right to Heal – Part I, Living Healthy, Without Gluten and Dairy– Part II, Living Healthy, Without Gluten and Dairy Part III. Afterwards, read Sandi’s information-packed article and true story: Going Blind.
About the author: Sandi Star, CCN Sandi is the founder of Karmic Health, specializing in nutrition related to disease where a gluten and casein (dairy) free lifestyle is crucial; working with celiac, autism and all auto immune disorders. Sandi graduated from The Natural Healing Institute with a degree in Clinical Nutrition and is continuing her studies in Clinical Herbology. She has hands on understanding of many health issues and has dedicated her life in helping others reach their optimal health.
For more information related to this article (or her previous articles) please visit www.karmic-health.com or contact Sandi Star at 760.685.3154.
Tina Turbin
www.GlutenFreeHelp.info
Grocery Shopping for Healthy Family Eating
As the mother of three grown children, I know how hard it can be, even with the best of intentions, to eat a healthy diet yourself and make healthy foods for the rest of the family. With just a few simple tips, you can totally change your eating habits for the better.
It all starts with grocery shopping, for which you must make like a Boy Scout and “be prepared.” It is best to create a menu for the week with breakfasts, lunches, dinners, and snacks determined for each day before you even make your grocery list. Choose healthy recipes that take thirty minutes or less to prepare, unless you know you’ll have more time available for cooking. There are many easy, healthy recipes available online which you can prepare in a snap. Make sure there are enough high-protein foods and snacks, which won’t leave you with low blood sugar and send you to high-fat and high-sugar snacks for a fast blood sugar boost.
Before hitting the grocery store, eat a big, filling meal, so you won’t deviate from your shopping list by picking out items that look good just because you’re hungry. You can’t binge on foods that aren’t good for you if you don’t have them in your home, after all. This will not only result in a healthier set of groceries, but will save you money, as well!
Tina Turbin
Learn to Recognize the Difference between Malnourishment and Mental Disorders in Children
If you’re like me, you’re probably alarmed to hear so much about the prevalence of “mental disorders,” particularly among children. It seems that every year there are more and more disorders are emerging, along with psychotropic medications to treat them. However, as the mother of three grown-up, mentally healthy children and with a strong background and experience in nutritional research, I counsel mothers to be careful before mistaking your children’s odd behavior with a mental illness. It turns out the symptoms of malnourishment and mental disorders are actually quite similar in children.
Even just the signs of a deficiency in B vitamins will sounds familiar to you as the symptoms of childhood mental disease. Deficiency in Vitamin B1 can result in fatigue, poor memory, irritability, and insomnia. A B2 deficiency can cause depression. Deficiencies of B3 may begin as depression, but untreated may progress to psychosis or even dementia. Deficiencies in Biotin may cause a variety of problems, including skin disorders and eczema, dandruff or hair loss, fatigue, depression, even hallucinations.
Children can also suffer from a classic case of low blood sugar. Studies show that breakfasts rich in protein keep the body’s blood sugar level higher and more stable than breakfasts such as, say, the American breakfast staple of sugar-packed cereals. Kids are bound to peak in the morning and then crash later in the day, exhibiting hyperactivity and lethargy during the school day.
The consequences of improperly diagnosing a mental illness instead of treating malnourishment in a child can be severe. If you care about your child and children in general, it is imperative that you and your child’s teachers learn the crucial difference between children’s mental disorders and inadequate nutrition.
Tina Turbin
Creating a Memorable Main Character in Your Children’s Book
As a children’s author, I’m often pleased to find that I’ve inspired children and adults to write children’s stories of their own. A question they wonder is what exactly makes a good children’s book. It’s important that a children’s book have a charming protagonist with whom readers can identify. It seems that children tend to literally identify with characters they love; in their imagination and games, they often pretend they are indeed the beloved protagonists of their favorite movies, TV shows, and books.
So what qualities should a children’s story protagonist have? If you study the most popular children’s stories of the last few hundred years, many characters have a superhuman trait or superhuman power, but at the same time they have a human frailty about them which most people have in common—such as a fear or anxiety about something or something in their life that is causing them stress. In Jack and the Beanstalk, Jack is a regular, poor boy with magical beans, and Harry Potter of course finds that he is a wizard. Jack’s magical beans and Harry’s magical genetic endowment delight children, while Jack’s hard circumstances and the fact that Harry is an unloved orphan earn the sympathy of children everywhere.
In Danny the Dragon, I sought to have these same qualities, and I have met many children who truly love and identify with Danny. Of course, some wonderful children’s books lack a traditional protagonist, such as Goodnight Moon or some very delightful counting and alphabet books. This is why nailing down what makes for good children’s books can be a challenge!
Going Blind! by Sandi Star, CCN
I remember using a ton of eye drops and never getting any relief. I was finding pieces of Sclera (the white, dense, fibrous outer coating of the eyeball) inside the lids and I was getting scarring. I was working full time and going to school at night; looking at a computer screen all day and books all night made it much worse! The lights at night were a big blur and I couldn’t focus at all. My eyes were literally drying up. I was having ongoing eye infections. To say the least I was going blind and was petrified. I couldn’t wear contacts to save my life. They would pop right out or worse, get caught in the corner of my eye.
I saw an eye doctor who never gave me answers. He never thought to test me for Sjögren’s Syndrome. They put silicone plugs in my tear ducts to try and keep what little moisture I had in my eyes. Talk about a scary situation! My general doctor was determined to find out what was going on because it went way beyond the eyes. I was extremely fatigued and had major joint and muscle pain, stomach issues, brain fog and upper respiratory infections often. I was pretty discouraged, but felt lucky my doctor cared, who by the way told me it wasn’t in my head (nice rarity). I knew eventually we would figure it out. He ran some blood work and pulled out the big guns (gigantic reference book) while explaining I had Sjögren’s Syndrome and sent me to a Rheumatologist. I was not in the mood to add more medication to my already long list at the time and decided to look into alternative care. I already had developed hypothyroid – another autoimmune disease. Since going gluten, dairy and soy free, I have been able to wear contacts daily and most of the symptoms from Sjögren’s are gone. I consider myself one of the lucky ones who took control and is able to manage a great deal with nutrition alone.
What is Sjögren’s
Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.
Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.
With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women. About half of the time Sjögren’s syndrome occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma. When Sjögren’s occurs alone, it is referred to as “Primary Sjögren’s.” When it occurs with another connective tissue disease, it is referred to as “Secondary Sjögren’s.”
All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important – they may prevent serious complications and greatly improve a patient’s quality of life.
Since symptoms of Sjögren’s syndrome mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s syndrome. Patients need to remember to be pro-active in talking with their physicians and dentists about their symptoms and potential treatment options.
Testing
There is no single test that will confirm diagnosis. Rheumatologists have primary responsibility for diagnosing and managing Sjögren’s syndrome and can conduct a series of tests and ask about symptoms. An international group of experts formulated classification criteria for Sjögren’s syndrome which help doctors arrive at a diagnosis. These criteria consider dryness symptoms, changes in salivary (mouth) and lacrimal (eye) gland function, and systemic (whole body) findings.
Blood tests your physician may perform include:
ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren’s patients have a positive ANA test result.
RF (Rheumatoid Factor)
This antibody test is indicative of a most often performed for the diagnosis of rheumatoid arthritis (RA) but is positive in many rheumatic diseases. In Sjögren’s patients, 60-70% have a positive RF.
SS-A (or Ro) and SS-B (or La)
These are the marker antibodies for Sjögren’s. Seventy percent of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B (these may also found in lupus patients).
ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR indicates the presence of an inflammatory disorder, including Sjögren’s syndrome.
IGs (Immunoglobulin’s)
These are normal blood proteins that participate in immune reactions and are usually elevated in Sjögren’s patients.
The ophthalmologic (eye) tests include:
Schirmer Test
Measures tear production.
Rose Bengal and Lissamine Green
Eye drops containing dyes that an eye care specialist uses to examine the surface of the eye for dry spots.
The dental tests include:
Salivary Flow
Measures the amount of saliva produced over a certain period of time.
Salivary scintigraphy
A nuclear medicine test that measures salivary gland function.
Salivary gland biopsy (usually in the lower lip)
Confirms inflammatory cell (lymphocytic) infiltration of the minor salivary glands.
Your physician will consider the results of these tests along with your physical examination to arrive at a final diagnosis. Further research is being conducted to refine the diagnostic criteria for Sjögren’s syndrome and to help make diagnosis easier and more accurate.
Treatments
The treatment of patients with Sjogren’s syndrome is directed toward the particular areas of the body that are involved and complications, such as infection. There is no cure for Sjogren’s syndrome.
Dryness of the eyes can be helped by artificial tears, eye-lubricant ointments at night, and minimizing the use of hair dryers. When dryness becomes more significant, the ophthalmologist can plug the tear duct closed so that tears cover the eye longer. Cyclosporine eye drops (Restasis) are recently approved medicated drops that can reduce the inflammation of the tear glands improving their function. These however are painful to use and have side effects. Signs of eye infection (conjunctivitis), such as pus or excessive redness or pain, should be evaluated by the doctor.
The dry mouth can be helped by drinking plenty of fluids, humidifying air, and good dental care to avoid dental decay. The glands can be stimulated to produce saliva by sucking on sugarless lemon drops or glycerin swabs. Artificial saliva preparations can ease many of the problems associated with dry mouth. Many of these types of agents are available as over-the-counter products, including toothpaste, gum, and mouthwash (Biotene). Vitamin E oil has been used with some success. Infections of the mouth and teeth should be addressed as early as possible in order to avoid more severe complications. Diligent dental care is very important. Saltwater (saline) nasal sprays can help dryness in the passages of the nose. Vaginal lubricant should be considered for sexual intercourse.
As mentioned, each person is different in how they are affected by Sjögren’s. Because I know first hand I would say first and foremost – GO OFF GLUTEN. Once you have that under control you can talk to your doctors about complimentary treatments if needed. The biggest thing with any auto immune disease is inflammation. Make that your number one goal to have that under control. Consider a holistic approach which has no side effects and is a lot safer.
Some essential survival tips for Sjögren’s patients:
- Avoid stomach upset.
- Never feel guilty about seeking a second opinion.
- Join a support group if needed.
- Listen to your body. Do not take on more than you can handle, and pay attention to new symptoms, or symptoms that get worse, and tell your practitioner.
- Do your research.
- Make sure you coordinate all of your care in Sjögren’s and head your “medical care team.” You want to make sure you are keeping records on medications, supplements and herbs. Make sure your physician knows about all the prescription and OTC medications you are taking. Many drugs have side effects that can make your Sjögren’s symptoms worse.
- Become an active participant in your treatment decisions and an informed consumer. You will feel more in control of your disease, decrease anxiety, and ensure you are getting the best possible medical care for you.
- You can maintain a good quality of life with Sjögren’s. Stay on top of the latest information, educate yourself, find support and watch your limits.
- Keep positive relationships and support in your life. These will help you cope and will reduce general anxiety when you have a frequently misunderstood disease.
Dry Mouth Survival Tips
- Eat soft, moist foods if you have trouble swallowing or with your teeth chipping and breaking.
- Sjögren’s patients should eat smaller, more frequent meals to stimulate saliva flow.
- Avoid salty, acidic or spicy foods and carbonated drinks that may be painful on your dry mouth or interfere with digestion in Sjögren’s.
- Help prevent dental decay by using oral products containing the sweetener xylitol For dry mouth, increase your intake of liquids during the day. Remember that small sips of water work best.
- Sjögren’s patients should avoid mouthwashes and rinses that contain alcohol or witch hazel. These ingredients can aggravate oral dryness and burning.
- Chew sugar-free gum or suck on hard diabetic or sugar-free candies to help increase saliva. The best gum I’ve found has xylotil called Spry. They also carry mints.
- Apply vitamin E oil or moisturizing gels to dry or sore parts of the mouth or tongue for long-lasting relief. Use the liquid oil or punch holes in vitamin capsules to apply.
Dry Eye Survival Tips
- Try sterile eyelid cleansers or baby shampoo on a warm washcloth to help with blepharitis, a common condition in Sjögren’s that causes chronic inflammation of the eyelids and eyelid margins.
- For dry eye, apply a warm, wet compress to the closed eyes using a washcloth. Apply at bedtime and upon awakening for 5 minutes, or more often if helpful.
- The mainstay of treatment for blepharitis, a chronic condition that accompanies dry eye and Sjögren’s, is warm compresses, lid massage and lid hygiene.
- If your eyes are bothered by light, wear sunglasses or try lenses with a FL-41 filter.
- Avoid applying anything to the eyelids that can irritate your dry eye; products placed on the eyelid will get into the tear film.
- Use non-preserved artificial tears frequently and regularly, even when your eyes feel good. The goal is to keep your eyes comfortable, not to wait until they are uncomfortable.
- Keep the upper and lower eyelids free of facial creams at bedtime; they can enter the eye and cause irritation.
- Try ointments or gels at bedtime by first applying them only to the eyelids and lashes. If that is not helpful, place ~1/4 inch of ointment between the lower lid and eyeball.
- Eye ointments and gels can blur your vision and are usually reserved for overnight use.
- If your vision is blurred with artificial tear use, try a less thick (viscous) drop or ointment.
- Try moisture chamber glasses, wrap-around sunglasses, or other glasses, goggles or shields to prevent moisture evaporation and offer protection from air currents that irritate your dry eye.
Dry Skin Survival Tips
- Take short, warm baths or showers to help with dry skin. Hot water removes skin oils.
- Sjögren’s patients with dry skin should pat dry after bathing and moisturize immediately while the skin is still damp. Natural oils such as coconut, almond, sesame and apricot work well.
- Sjögren’s patients with dry and/or sensitive skin should avoid fabric softeners in the washer and dryer. Always use hypoallergenic products.
- After swimming, make sure that you shower and immediately use a moisturizer to reduce dry skin symptoms.
Sun & Sjögren’s Survival Tips
- To reduce reactions to the sun, wear good UV-protective eye lenses and sunglasses, and seek the shade when outside.
- Protect your skin and eyes through use of sunscreen, sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting.
- Did you know that ultraviolet (UV) radiation from the sun and other light sources can affect Sjögren’s patients, leading to skin rashes, disease flares, eye sensitivity and pain?
- Consider purchasing UV-protective car and home window films that are clear or tinted to protect yourself from UV radiation.
- Look for the words “broad spectrum” on sunscreen protection. This means that you will be protected from both UVA and UVB radiation.
- Make sure you are taking enough Vitamin D3 and antioxidants.
Fatigue Survival Tips
- Battling fatigue with Sjögren’s? Know your limits and pace yourself.
- Don’t be a couch potato! A common cause of chronic pain and fatigue in any disorder, including Sjögren’s syndrome, is lack of exercise.
- Educate your friends and family about what you are going through and how fatigue in Sjögren’s syndrome can come and go.
- Sjögren’s can cause fatigue, but there can be other related causes such as adrenal fatigue or hypothyroid disease and depression.
Brain Fog Survival Tips
- Did you know that “brain fog” is a major complaint of Sjögren’s patients? Hint: Train the brain! If you don’t use it, you will lose it.
- Don’t assume your “brain fog” is due to Sjögren’s, especially in patients over 65-70 years of age: a major cause of cognitive dysfunction can be side effects of drugs and drug interactions and food intolerance such as gluten and dairy. These foods are inflammatory and cause an opiate affect similar to brain fog.
- To help symptoms of “brain fog,” minimize stress and anxiety. Take breaks throughout the day and learn relaxation exercises and practice them at regular intervals.
- Reduce caffeine and alcohol to help with “brain fog” and sleep problems in Sjögren’s.
Dry Nose & Sjögren’s Survival Tips
- Use natural saline spray several times a day if needed. Clean and moisture nasal cavity in the morning and again at night. This helps keep allergens from settling in the cavity as well.
- Dry Ear Survival Tips
- A drop of earwax remover or mineral oil can help dry itching ears.
Herbal Remedies and Supplements
Rosemary
The rosemary plant contains several anti-inflammatory agents that help in the prevention of arthritic pain and dryness caused by Sjogren’s Syndrome. It is recommended to make rosemary tea instead of eating the plant. Mix a half an ounce of rosemary leaves in a pot of boiling water. Cover the pot, and let the mixture simmer for 30 minutes. Consume the tea before going to bed. This can be repeated as often as necessary.
Evening Primrose Oil
Evening primrose oil contains gamma linolenic acid, also known as GLA. GLA is a fatty acid that helps Sjogren’s Syndrome sufferers by introducing prostaglandin into the system. Prostaglandin in turn works as an anti-inflammatory to help common Sjogren’s Syndrome symptoms. Evening primrose oil should be taken daily, with a dosage of 3,000- to 6,000-mg.
Celery Seeds
Celery contains several different anti-inflammatory agents that can help Sjorgren’s Syndrome symptoms such as joint paint, inflammation, and lethargy. Celery also packs over 340 milligrams of potassium per single cup. This is beneficial to anyone with an autoimmune disease, since lack of potassium can cause arthritic like symptoms. Celery plants can be eaten in large quantities, but for faster and easier results, celery seeds are recommended. Place a teaspoon of celery in a cup of boiling water. Up to three cups daily may be consumed.
Gamma-linolenic acid (GLA) may actually reduce inflammation. Much of the GLA taken as a supplement is converted to a substance called DGLA that fights inflammation. Having enough of certain nutrients in the body (including magnesium, zinc, and vitamins C, B3, and B6) helps promote the conversion of GLA to DGLA.
Cysteine is an amino acid that can be found in many proteins throughout the body. When used as a supplement, it is usually in the form of N-acetyl-L-cysteine (NAC). The body converts this to cysteine and then to glutathione, a powerful antioxidant reducing symptoms associated with Sjögren’s syndrome.
REFERENCES:
Koopman, William, et al., eds. Clinical Primer of Rheumatology. Philadelphia: Lippincott Williams & Wilkins, 2003.
Kelley’s Textbook of Rheumatology, W B Saunders Co, edited by Shaun Ruddy, et al., 2000.
Sjögren’s Foundaton.
You can read all about Sandi Star’s remarkable story in her 3-part article series available at the following links: Living Gluten Free – Right to Heal – Part I, Living Healthy, Without Gluten and Dairy– Part II, Living Healthy, Without Gluten and Dairy Part III.
About the author: Sandi Star, CCN Sandi is the founder of Karmic Health, specializing in nutrition related to disease where a gluten and casein (dairy) free lifestyle is crucial; working with celiac, autism and all auto immune disorders. Sandi graduated from The Natural Healing Institute with a degree in Clinical Nutrition and is continuing her studies in Clinical Herbology. She has hands on understanding of many health issues and has dedicated her life in helping others reach their optimal health.
For more information related to this article (or her previous articles) please visit www.karmic-health.com or contact Sandi Star at 760.685.3154.
Tina Turbin
www.GlutenFreeHelp.info
A Guide to Personal Goal-Setting
I have found setting goals to be an especially useful tool since my children left the house, leaving me with a lot more time to reconnect with and realize my dreams of being a children’s author and helping others. Whether your children are grown, your children are still young, or you don’t have any children at all, it is vital to establish your goals.
So, where do you want to go in life? Get a precise “big picture” of what you want to do in all of the fields of your life. These “big picture” goals should embrace various areas, such as artistic, education, career, spiritual, family, financial, physical, community service, and friendship goals. If you’re anything like me or the average woman, you probably have many different facets of life that are important to you—your marriage, your children, your career, and wellness or faith, for example. Make sure to write your grand vision down and all of the more detailed goals your vision encompasses.
By setting sharp, clearly-defined goals, you can measure your progress and celebrate the achievement of your goals, raising your self-confidence and your ability to achieve further goals. Your smaller goals should include dates and amounts where applicable so you can measure your achievement. Keep them realistic and attainable so you can reap the rewards of having attained what you want. Determine which goals have priority so you don’t feel overwhelmed by everything you’ve set out to do. Lastly, don’t let anyone but yourself determine what your goals are, and the sky is the limit in what you can dream.
Tina Turbin
Keeping Your Celiac Child Safe at School
First of all, you’ll need allies, and who better than your child’s teachers? This means all of his teachers, including his physical education instructor or his home room teacher, with whom some children only meet with periodically. I highly recommend meeting with each teacher individually. Writing a note or e-mail is usually insufficient to communicate the seriousness of the condition and the details of the diet, including crucial issues such as cross-contamination and hidden sources of gluten, such as beauty products, for instance.
There are a few things his teachers should know about it in this meeting. First of all, it needs to be communicated that your child’s restricted diet is to preserve his health; tell them that if your child deviates from his diet in any way, he can become quite ill. However, make it clear that your child is still “normal” and has interests and ambitions just like other children and shouldn’t be set apart from the others in any way except for with respect to diet. Next, let the teachers know that if there will be a birthday party, snack time, or other event with food in the classroom, they should let you know ahead of time so you can prepare gluten-free items for your child to eat and share.
Finally, keep communication as open as possible between your child’s teachers (and school administrators) and you by providing them with all of your contact information, such as your e-mail address, all phone numbers they can reach you at, including your cell, work, and home numbers. Give them the phone numbers for relatives who are knowledgeable in celiac disease and the gluten-free diet or your child’s nutritionist, in case your teachers need to ask a question about your child’s condition and aren’t able to get ahold of you.
In addition to communicating individually with teachers, provide them with some written material on celiac disease. The Celiac Sprue Association offers printable letters for various school administrators, including the principal, school counselor, nurse, cafeteria staff, and teachers. Also, recommend some books on celiac disease or gluten-free websites in case they want to refer themselves to these resources for more information, and donate a couple of books on these subjects to the school library and for the nurse’s office.
Finally, I can’t insist enough the importance of teaching your child about his own condition and his diet. How much your child can absorb depends on his age and maturity level. You’ll be surprised by how much a child is capable of understanding.
Tina Turbin
