Donepezil (Aricept®) may help to make people smarter and some doctors think that it may also be a good treatment for autism.
Early data suggest that drugs used to treat Alzheimer disease may also be a good treatment for autism. While donepezil is prescribed for many diseases, the best data exist for Alzheimer's and Down syndrome. Donepezil appears to be safe and it seems to work the same way in both animals and people. Some doctors don't like the idea of using donepezil because it only works on one part of the brain (acetylcholinesterase enzyme). The authors urge more studies looking to see if donepezil is a good treatment for people with autism.
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Living Gluten Free – Right to Heal
Feb 22, 2010 by karmic healthBy Sandi Star, CCN
After struggling for over 40 years with chronic migraines, IBS, Muscle and joint pain, fatigue, brain fog, asthma and a slew of other ailments and frustrations I decided to take a closer look at the cause rather than obsessing on the symptoms. I was tired of relying on doctors to give me answers and tired of the medications that only gave me side affects and little relief.
I had been committed to health and fitness for over 20 years, losing close to 50 pounds and 5 dress sizes, however I still had all the chronic conditions that played havoc in my life. I realized there was a key element missing and soon found out it was my reaction to gluten and dairy. I didn't know enough about food intolerance or allergies or at least put the two together. I never believed food could have such a serious impact on overall health let alone be the direct cause of my diseases. With what I know today I’m surprised my doctor didn’t put the connection together when he diagnosed me with Sjögren’s Syndrome (autoimmune disease). Sjögren’s is one of the symptoms of Celiac along with a long list as you will see below and nutrition plays a critical role in the healing process. By making the appropriate diet changes – (gluten and dairy free), I’ve managed to eliminate my migraines, IBS………etc., etc., and have the Sjögren’s Syndrome under control. Even better, I have eliminated all medications and use food and natural remedies for nutrition and overall health. Now that you know why I became a clinical nutritionist and why I started Karmic Health lets get into the details of why it’s so important to understand gluten and its relation to diseases.
Why the problem with gluten now? A lot has changed in the way we harvest food compared to 50 years ago. Some of the seed companies began engineering wheat kernels that could be more easily ground and produce fluffier flour to make the soft, delicious white bread for example had to have greater yields; it made more money for the farmer and increased sales.
Gluten is a composite of the proteins gliadin and glutenin. These exist, conjoined with starch, in the endosperms of some grass-related grains, notably wheat, rye, and barley.
Understanding what happens in the body and some of the symptoms will help millions of people who go undiagnosed. Celiac is the most common genetic disease of mankind (yet for every person diagnosed, 140 will go undiagnosed).
A wheat allergy is the body’s abnormal autoimmune response to a certain protein component of wheat; it’s exhibited by a severe sudden onset allergic reaction. Usual symptoms are immediate coughing, asthma, breathing difficulties, and/or projectile vomiting. It can cause life-threatening responses in allergic people. A true Wheat allergy affects less than 1/2 % of population.
Intolerance's are much more common than true food allergies but are harder to diagnose. Food intolerance is an adverse reaction to food that does not involve the body's immune system. Generally food intolerance is an inability to properly digest certain foods. In some cases food passes right through the body before digestion is complete.
Leaky Gut is an increase in permeability of the intestinal mucosa to luminal macromolecules, antigens, and toxins associated with inflammatory degenerative and/ or atrophic mucosa or lining. Put more simply, large spaces develop between the cells of the gut wall allowing bacteria, toxins and food to leak into the bloodstream. Leaky Gut Syndrome has also been linked with many conditions, such as: Celiac Disease, Multiple Sclerosis, Fibromyalgia, Autism, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Eczema, Dermatitis, and Ulcerative Colitis.
Celiac disease is an autoimmune disease caused by an inappropriate immune response to dietary proteins found in wheat, rye, and barley (gluten and
gliadin). This response leads to inflammation of the small intestine and to damage and destruction of the villi that line the intestinal wall. These villi are projections (small folds) that increase the surface area of the intestine and allow nutrients, vitamins, minerals, fluids, and electrolytes to be absorbed into the body. When the villi are destroyed, the body is much less capable of absorbing food and begins to develop symptoms associated with malnutrition and malabsorption. When the body is exposed to the gluten and gliadin proteins, it forms antibodies that recognize and act against not only the grain proteins, but also against constituents of the intestinal villi. As long as the patient continues to be exposed to the proteins, he will continue to produce these autoantibodies. Celiac disease is found throughout the world but is most prevalent in those of European descent. It can affect anyone at any age and is more common in women. It is thought to be an inherited tendency that is triggered by an environmental, emotional, or physical event – although the exact mechanism is not fully understood.
According to the National Digestive Diseases Information Clearinghouse, about 5 to 15% of close family members of a celiac disease patient will also have the condition.
Symptoms
There are literally dozens, if not hundreds, of symptoms of gluten intolerance. It all comes down to inflammation in the body! Many people believe the most common symptoms are gastrointestinal in nature - yet the majority of people with gluten intolerance (and celiac disease) have extraintestinal symptoms.
The most common symptoms of celiac disease include:
• Fatigue
• Addison’s disease (hormonal disorder)
• Gastrointestinal distress (gas, bloating, diarrhea, constipation, vomiting, reflux)
• Headaches (including migraines)
• Infertility
• Mouth sores
• Weight loss/gain
• Inability to concentrate
• Moodiness/depression
• Amenorrhea/delayed menarche (menstrual cycles)
• Bone/joint/muscle pain
• Dental enamel hypoplasia (dental enamel defect)
• Short stature
• Seizures
• Tingling numbness in the legs
The “cure” is a life long gluten free diet.
Making the Transition
1. Have a reality check. Remember this is a choice! If you want to feel lousy for the rest of your life and get worse as time goes on then continue eating gluten. If you want to start on a journey to heal; go gluten free!
2. Give it time. It takes time to heal. Take the 45 day challenge.
Within this time frame you will notice the brain fog is gone. Your body will start adjusting to a healthy weight. Yes, you will lose the bloating and weight around the middle. Don’t be discouraged if it takes a little longer to feel 100%.
3. Look at your current diet and go through your pantry and refrigerator to find the foods and meals you already eat that are gluten-free. You may need to keep a food journal if you haven't already.
Be sure to list condiments, ice creams, produce, snacks, and other foods.
This list will be helpful as you create menus around your new foods and give you encouragement that you're already on the right track!
4. Give yourself permission to eat things that you may have restricted from your diet before your diagnosis. Potato chips or GF cookies may not be appropriate for other people, but they are a treat in a GF diet in small doses of course. You will need to find treats for yourself initially as you adjust to this diet. Count calories after you are comfortable with your new way of eating, manage your portions instead.
Once you are comfortable with the switch start cutting back on refined grains, crackers, breads, etc., to help the gut heal quicker. In all honesty, bread will not be that important. It's all about taking baby steps!
5. Look at your current menus and meals and find ways to eliminate gluten from your diet. Replace bread in sandwiches with GF bread or green leaf lettuce and add your favorite fixings and condiments. Have breakfast burritos with rice tortillas instead of toast and eggs. Look for GF hot and cold cereals (must not have barley malt) and have those handy for a snack or meal. Replace bread and crackers with tortilla or corn chips, brown rice cakes or popcorn. For example, chicken or tuna salad on rice cakes or scooped onto corn chips is delicious. Popcorn is a filling side dish with soup. Be on the lookout for meals on your current menus or the menus of friends and family that are naturally gluten-free (roasted chicken, baked sweet potatoes and steamed veggies, for example) and make them a staple on your new menus. Surf the internet, watch cooking shows and browse magazines for ideas and adapt them as you see fit.
6. Clear out any and all foods that have gluten, wheat, wheat flour, oats, oat flour, rye, semolina, or modified food starch from your pantry. This will allow you to see how close you are to living gluten-free already. If you have family members living with you who are not gluten free, you might consider giving the "offending edibles" to them to be put in another part of the house while you learn to live and think gluten-free. As time goes on you can cook for the entire family without gluten.
7. Plan and prepare your meals ahead of time. Being caught hungry without a plan is not a good idea! Keep a few GF soups on hand in case of extreme hunger. Keep a small cooler in your car with snacks such as nuts, dried fruit and water. It helps to outline and pack any meals you're eating at home and away from home, including snacks. An example could be -
o Breakfast: scrambled eggs and mixed vegetables rolled in a rice tortilla, sliced apples, and coffee.
o Lunch: Lettuce with turkey, avocado slices, tomato, and mustard, 1 oz. chips, and 2 organic dark chocolate pieces.
o Dinner: Grilled fish or chicken with mixed vegetables, wild rice, and fruit.
o Snacks: 1 oz. almonds and popcorn.
o Desert: Coconut Ice Cream or fruit.
Tips
1. Be patient with yourself. You'll have days when being gluten-free is really depressing (maybe even "fall off the wagon"). This is normal.
Relax – it’s a process.
2. Carry snacks with you wherever you go. It's often difficult to find an appropriate snack when the hunger strikes. GF bars are great!
3. Arrange with the hosts of gatherings you may attend to bring your own sides or complete meals. Most people are very supportive of restricted diets.
4. Carry a small cooler in your car with small cold packs to store fruit, snacks and water.
5. Consider avoiding restaurants during your transition phase as you learn how to eat and think gluten-free. Grilled meats (over a flame), baked potatoes and salads without croutons are usually safe bets. But keep a log of places you eat, what you ate and how you felt afterward. Gluten is insidious and can turn up in the oddest places (french fries, for example which can be dusted with flour).
6. Get your hands on cookbooks or start collecting your own recipes in a binder.
7. Carry digestive aids (enzyme and bioflavonoid) with you in case of accidental ingestion. There are ones specifically for gluten such as GlutenFlam by Apex Energetics; available from your healthcare practitioner.
8. Consider taking a multi-vitamin to make up for vitamins and minerals you may lack with your new diet (ask your doctor or nutritionist if necessary).
9. Find a mentor or support system.
10. Breathe
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 please visit www.karmic-health.com or contact Sandi Star at 760.685.3154
© Copyright Karmic Health 2010
Enzyme Therapy
May 6, 2007 by AnonymousSome parents find success with enzyme therapy. Its purpose is to help the body digest small bits of protein (peptides) that can affect the brain. Please see the gluten-free and casien-free fact sheets for more background.
Carnitine fumarate
Mar 23, 2007 by AnonymousMy son has Prader-Willi Syndrome and I know this is different from autism. I am posting this entry here, though, because his response to carnitine fumarate is really amazing. His OT was really impressed with how it has improved his processing speed. It works by improving fatty acid metabolism. Fatty acid metabolism is an area of active research for autism therapy. There doesn't really seem to be a downside to giving carnitine fumarate (other than diarrhea).
The text below is lifted from www.PWSNotes.org.
So, what is L-carnitine _fumarate_? Most L-carnitine sold by supplement manufacturers is either L-carnitine hydrochloride or L-carnitine _tartrate_ (L-carnitine bound to tartrate). With L-carnitine _fumarate_ (which was developed and patented by Sigma Tau, the maker of Carnitor), the carnitine is bound to fumarate, which is a key substrate in what is called the Kreb's cycle in mitochondria for the production of energy. It is the Kreb's cycle that produces the electrons that are then passed along respiratory transport chain complexes 1-IV for the production of ATP (the basic cellular form of energy). Citrate synthase is the key enzyme involved in the first step of the Kreb's cycle and as such can be rate-limiting for the whole cycle. Fumarate, though, is the substrate for the next to last step in the Krebs cycle and its related enzyme is fumarase.
About 58% of L-carnitine fumarate is L-carnitine, with the rest being fumarate. After it is ingested, the body separates the L-carnitine from the fumarate. Although I can't say for sure at this point, what might be happening is that the L-carnitine part is going off and doing all of the good things it is known for in terms of transporting fatty acids into the mitochondria for burning for energy and whatnot, while the fumarate is entering the Kreb's cycle and boosting its output of electrons that are then transferred to the electron transport chain, resulting in an increase in the production of cellular energy in the form of ATP. If that's what is happening, it could be the extra fumarate is providing a pathway around a metabolic block, possibly in succinate dehydrogenase (SDH), given that SDH is the enzyme that catalyzes the succinate-to-fumarate reaction. If so, it could be that the impairment in respiratory chain transport is not a primary event but is instead a downstream result of reduced substrate availability in the Kreb's cycle. (Interestingly, fumarase deficiency is a very rare autosomal recessive disorder in which the metabolizing of fumarate in the Kreb's cycle is sharply reduced or completely absent and is characterized by massive secretion of fumarate in the urine, encephalopathy, hypotonia and severe developmental delays, all of which (aside from excessive fumarate secretion) are rather reminiscent of another syndrome that we are all too familiar with.)
The Pure Caps capsules contain 586 mg of L-carnitine fumarate, with 340 mg of that being L-carnitine and 246 mg being fumarate. Sulli is only getting 1/4 capsule a day, which works out to about 85 mg of L-carnitine and 60 mg of fumarate for a 16 lb (7.25 kg) baby, which is about 12 mg/kg/day of L-carnitine and 8 mg/kg/day of fumarate. That's a surprisingly small amount of L-carnitine to be providing such dramatic benefit, given that the recommended dosage range for Carnitor is 35-50 mg/kg/day, and provides further support for the hypothesis that the fumarate part could be providing a significant amount of the benefit.
I've spent some time looking into the safety of L-carnitine fumarate and fumarate. L-carnitine fumarate is a relatively new form of carnitine and there aren't many clinical studies involving its use. The studies I found all have to do with Sigma Tau's patented formula for male infertility, ProXeed (yes, among other things, carnitine helps sperm swim better :-). The daily dose of that formula contains 2 g/day of L-carnitine fumarate, 1 g/day of acetyl-l-carnitine, 4 g/day of fructose and an unspecified amount of citric acid (which is also a metabolite in the Kreb's cycle), and in clinical trials seems to have been very well tolerated aside from the usual occasional side effects of large doses of carnitine (i.e., transient nausea and digestive upset, loose stools, etc.).
I have not been able to find any reports of fumarate being used as a supplement. However, fumarate is a component of ferrous fumarate (used globally for iron deficiency anemia in children and adults), as well as a number of drugs, including quetiapine and retroviral inhibitors such as tenofovir. In general it seems to be a safe substance (although it probably shouldn't be used by those with fumarase deficiency).
So what's the bottom line here? It could be that the L-carnitine vs. acetyl-l-carnitine question will become moot and the L-carnitine fumarate form could become the carnitine of choice for those with PWS.
For those who are interested in trying L-carnitine fumarate, the Pure Caps page for it is at http://www.purecaps.com/itemdy00.asp?T1=LCF1, with supplementary information at http://www.purecaps.com/PDF/pi/l_Carnitine_Fumarate.pdf. Jarrow also has (http://www.jarrow.com/product.php?prodid=191), as does Doctor's Best (http://www.drbvitamins.com/nutritionalproducts_details.asp?id=16). Make sure the label specifies that the L-carnitine is the fumarate form and not the more commonly available L-carnitine tartrate. All of the L-carnitine fumarate on the market is made by Sigma Tau and is pharmaceutical grade.
Please note that I am in the process of revising the carnitine and Coenzyme Q10 articles to suggest that, especially for older children, carnitine and/or CoQ10 supplementation be started with very low doses and then very slowly increased in order to give the child (and their parents) plenty of time to adapt to more normal levels of mental and physical energy. After all, older children with PWS have lived with a significant mental and physical energy deficit for years and to them that is "normal." Then CoQ10 or carnitine is started, and all of a sudden the world is a brighter, busier place, they're experiencing all kinds of new perceptions and sensations, and their thinking is zipping along at a significantly faster pace. It's probably much like going from a dim room out into bright sunlight, except way more intense because the increase in energy they're experiencing is a full body and mind experience. So it's not surprising that it could be a somewhat disorienting experience that could lead to emotional, mental and physical reactions that others interpret as irritability. I therefore consider it important that the increase in mental and physical energy provided by CoQ10 and/or carnitine be increased very slowly so as to give the child and their parents plenty of time to adapt, physically, mentally and emotionally, to each step up to a higher level of energy as the dose is slowly increased. It will also probably be helpful if the parents talk with the child ahead of time about what kinds of things they might experience when the CoQ10 or carnitine.
I think the need to proceed very slowly is somewhat less of an issue for infants and toddlers, especially those who are badly delayed in such things as babbling and talking, head control, sitting, and walking, as they have not spent nearly as much time entrained by a significant energy deficit and I think it is important to get them developmentally on track as soon as possible. But as always, it is critical that parents use their intimate knowledge of their child and intuition in determining the approach that will be best for their child.
I also need to note that there is the possibility that the irritability reported in some of those with PWS when CoQ10 supplementation is started could be due to the increased energy unmasking an intrinsic behavioral disturbance that was previously "sedated" by a serious impairment in cellular energy availability. At this point I have no way of determining how much of that irritability could be the result of a some level of understandable disorientation due to a sudden increase in mental and physical energy (as described above) or is due to an unmasking effect. If it does turn out that CoQ10, carnitine, or anything else that improves energy metabolism and mitochondrial function in PWS to more normal levels can unmask a previously sedated behavioral disturbance, I think there are ways that could be dealt with, but that is beyond the scope of this post. I will note once again, though, that my hunch is that at least some of the severe behavioral problems associated with PWS are due to (1) chronic intermittent hypoxia and sleep fragmentation caused by under- or untreated breathing disorders, and/or (2) untreated energy metabolism problems that lead to repeated episodes of hypoglycemia, which is well-known to cause severe irritability and anxiety as well as psychotic-like symptoms and out-of-control rages. I therefore consider it essential that any breathing disorder be aggressively treated and every effort made to ensure stable blood sugar levels throughout the day.