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Tuesday, May 11, 2010

I don't need studies to prove what I already know

I did not write this, just saw it and copied and pasted.

The results of a 2-year study indicate that use of a gluten- and casein-free diet may help ameliorate some of the symptoms of autism spectrum conditions for some children.

In conjunction with the Center for Autisme in Denmark and the Universities of Oslo and Stavanger in Norway, ESPA Research, a not-for-profit subsidiary of ESPA (Education and Services for People with Autism) along with the University of Sunderland, announce the publication of results for a 2-year research project looking at the effectiveness of a gluten and casein-free diet for children with autism. Group results of the Scandinavian - British (ScanBrit) randomised controlled dietary trial appear in the April 2010 edition of the journal Nutritional Neuroscience.

Autism is a life-long condition present in an estimated 1% of the population. It primarily affects the way a person communicates and deals with their social environment and people around them. Autism is poorly understood with currently no genetic or biological test to aid diagnosis. Whilst no universal intervention strategy has been found to manage the more complicated symptoms of autism, some parents have reported that changes to their child’s diet did, in some cases, reduce some of the symptoms associated with autism.

“For many years parents of children with autism have been experimenting with changes to their child’s diet” said Dr Paul Whiteley, from ESPA Research. “Some have reported a reduction of certain symptoms whilst a gluten and casein-free diet is being followed. In this investigation, we tested experimentally the effectiveness of such a diet using some of the gold-standard assessment instruments currently available in autism research. We found significant group changes to some autistic symptoms whilst participants were on diet compared to no diet in place”.

In the study, 72 children with autism were randomly allocated to a diet or no-diet group. Following a battery of baseline tests and measurements, children allocated to the diet group followed the intervention with support from a study nutritionist. Whereas traditional studies of this type normally just compare intervention against non-intervention, the ScanBrit study also used an adaptive design setting specific targets of improvement to be met by children on diet in order to indicate any success of the intervention.

“Our results suggest that some children with autism may benefit from this type of intervention” Whiteley said. He cautions however that “dietary changes did not work for everyone and demonstrates the clear need for dietetic and medical support if such a restrictive regime is to be attempted”. The next stage of the research will try and predict those best- and non-responders to the diet on the basis of behavioural patterns and the analysis of urine samples taken over the course of intervention.

Urinary analysis will be conducted on a state-of-the- art Q-TOF Mass Spectrometer recently acquired by ESPA Research.

*Gluten-Free, Casein-Free Diet Not Effective? – A News Analysis:*

(Another interesting follow-up to a recent discussion on our board-)

By Todd Gary

One of my pet peeves is bad information, especially in the form of bad or even irresponsible news reporting. In a day and age when massive proliferation of information is so easy, it becomes ever more important to be critical “consumers” of information. The May 4, 2010, article (blurbed and linked in SAR of May 5, 2010),( http://www.consumer news04/2010/ 05/gluten_ autism.html ) touting that the “Gluten-Autism Link Doesn’t Hold Up,” is a perfect example, and well worth unpacking in a day and age when few people read past the headlines. Setting aside the headline, the open paragraph of the article stakes the claim: “A gluten-free, casein-free diet is not an effective treatment for autism spectrum disorder (ASD), according to a review of more than a dozen major studies investigating the approach.” Note that the author is not merely saying the GF/CF diet is of uncertain benefit, or that there aren’t studies establishing benefit or lack of benefit. No, this writer makes a definite and affirmative claim: the diet is “not an effective treatment.” Ok, so we should expect valid scientific data or evidence establishing lack of efficacy. As with any critical analysis of information, we start with the source. Who is reporting this? Is it a reputable source? Are its reporters held to ethical reporting standards? Are there axes to grind? Following the SAR link we find – wait, it’s not the NY Times, or the LA Times – it’s… Consumer Reports?? Hmm, we aren’t talking about the latest model Pria or toaster ovens – we’re talking about autism treatment. Perhaps a bit far afield from their usual expertise, but let’s give this usually reputable source (of electronics reviews) some benefit of doubt. But wait – there’s another glaring concern: Where’s the author? Scroll up, scroll down – no by-line anywhere at all. Now that’s a bad sign! It means no accountability at all. For all we know, it could have been written by the laundry detergent correspondent’s eighth grade daughter for a class homework assignment. So much for the source of the article; what about the source of the content? The second paragraph introduces the Venerable Authority, quoted extensively throughout the article, and the source of the “study” at issue: “Austin Mulloy, a doctoral student in the Department of Special Education at the University of Texas at Austin.” Wait – it’s not a doctor? Merely a doctoral student? But let’s look even closer. Despite the implication, “doctoral student” does not mean “medical student”: Mr. Mulloy is in the “Special Education” department at the University of Texas. He’s a grad student studying special education. There’s no medical background apparent here whatsoever -- in either the news source, the author of the article, or the author of the study! That’s mighty odd when the subject is the treatment of autism! On to the content… The study was performed by Mr. Mulloy and “a team of scientists from the Meadows Center Autism Spectrum Disorders Institute.” (What kind of scientists? Not reported. What is the Meadows Center? Not reported.) And here is a key fact in the third paragraph: this was not primary research, but a review of “15 published, major scientific studies” performed by others. So what did they find? Did these “15 published, major scientific studies” disprove any benefit from the diet, as promised? Ah – not so fast! Paragraphs 4, 5 and 6 are all background on the diet. Not until paragraph 7 do we find the meat in this cocoanut: “The research team reported that a number of gross methodological flaws invalidate studies that show support for using the diet as an ASD treatment. "So, the claim staked by the article in its opening paragraph is proved false. We did not find a single primary, peer-reviewed study disproving benefit of the diet. Rather, we find a group of folks throwing barbs at “15 published major scientific studies” performed by others, that actually showed benefit. But perhaps describing this review accurately just wouldn’t be as “good” news. So, in the interests of making “good news” we created “bad information." The rest of the article is almost anti-climactic, once its false premise and methods are revealed. Paragraph 8 tells us that a number of documented phenomena other than diet “can explain” the outcomes of the 15 studies. Not “do explain” – just “can explain.” Hardly overwhelming disproof of benefit. (The article doesn't even bother to mention what these other "documented phenomena" are.) Paragraph 9 is beaut, though, and typical of the “scare the parents” methodology of the mainstream media establishment. Here the author sub-headlines a special paragraph: “Caution on Diet Changes.” Why should we have such caution? Well, because our graduate student Mr. Mulloy urges so.Because he says that “a variety of adverse consequences are known to be associated with a gluten- and casein-free diet….” Really? Wow! Wish I knew what those are. Go figure! Our son has been on it for years, we’ve been reading about it for years, we’re well-educated on autism spectrum disorders and their treatments, and all this time we must simply have missed hearing about all (or even any!) of these “adverse consequences” that are “known” to be associated with the diet. But this brings up a great forensic tool for unpacking bad reporting: the passive voice detector. Passive voice hides identity, which is very useful if you want to hide motive or a lack of information. Mr. Mulloy states that this “variety of adverse consequences are known.” Known? What does that mean? Known by whom? Does Mr. Mulloy mean to say these adverse consequences are reported and documented? If so, why doesn’t he say so? If he said that, of course, we might want to know what the consequences are, who researched and reported them. And if that information doesn’t exist, or is simply inconvenient, it is much simpler to resort to the passive voice. Anytime you hear the passive voice (“It has been reported that…” for example) let your “bad information” alerts sound off. The final three paragraphs of the article are more fluff -- background on ASD, all irrelevant, except a final note of falsity that flavors the whole meal in reverse (if you catch my drift): “While the exact cause of autism remains elusive, some possibilities have been ruled out, including some routine childhood vaccines.” With this mindless nod to the reporting community’s marching orders on vaccines, we come full circle to the false premise of this article. Lack of evidence does not disprove or “rule out” anything. So, Dear autism readers everywhere – Caveat Emptor! Get past the headlines, use the ol' noggin, and demand accountability and good information. Our kids health depends on it.

Sunday, May 9, 2010

May is CdLS Awareness month

Check out this video of these gorgeous kids, several we have met and fell in love with. There are several that look so much like our Katy bug.

Wednesday, May 5, 2010

Funny and not funny at the same time

Tuesday, May 4, 2010

Please vote

The Cornelia deLange Syndrome Foundation needs your help. The foundation has really helped our family in a lot of ways and they need this money to further research not just CdLS, but also other associated things like autism, which is near and dear to my heart. This is the syndrome that best fits Katy and I feel that the parents that I have met through the foundation have given me so much in terms of support, information and hope for the future.

Thursday, April 29, 2010

RECIPE: gfcfsf lasagna

I love lasagna, so when my allergies began to rear their ugly head I was sad that I would not be able to eat lasagna. Well, now I can! I got some Daiya Vegan Cheese Alternative and made up a recipe for it. Note: the abbreviations stand for gluten free, casein free, soy free, in case you were wondering.

GFCFSF Lasagna

1 12oz pkg of Tinkyada Brown Rice Lasagna
1 12oz can of tomato paste
20oz of water
1 lb of lean ground beef, browned
1/2 lb of sausage, browned(I buy some from a local farm,watch ingredients)
Italian seasonings(I like Mrs. Dash blends, also watch ingredients)
Sea Salt
4 eggs or egg replacer equivalent
1 1/2 cups of Daiya vegan cheese alternative, divided

Preheat oven to 375*F. Boil lasagna until flexible, but still firm. Meanwhile, mix tomato paste and water in sauce pan until smooth, add in seasonings and salt, then add meat and simmer. Mix eggs or egg replacer and 2/3 of the cheese in a bowl, add some seasonings. In a large casserole or cake pan, layer tomato mixture, noodles, egg mixture, repeat. Bake for 35 minutes, then add remaining cheese and bake 10 more minutes.

Wednesday, April 28, 2010

Random stuff

My daddy has been deployed to Afghanistan for a year and he is on his way home. I can't wait to see him. Please pray for his safety in travel. May the hand of the Lord keep him safe and give him the strength to get through the waiting game.

My health is beginning to improve. I stopped taking Synthroid which was making me far worse with scary side effects like heart palpitations, severe depression, shortness of breath and exercise intolerance. I started taking Armour thyroid almost 2 months ago and I am on a very small dose and probably need to adjust my dose upward when I see the doc on May 13, but I am feeling much better. I am still having hair loss, no appetite, dry skin and hair, constipation and fatigue, but all of these are much less than they were and I am losing weight with little effort, yay! I am definitely better on the Armour than I was on Synthroid. I will never take that junk again. I do think that my adrenal glands are probably a little worn out from my high stress life, so I ordered a saliva test to find out how they are doing. If they are worn out I can take supplements to help them out. I am taking lots of supplements already because apparently having gluten intolerance has depleted my body of some essential nutrients as indicated by my lab results. I have been gluten free for 8 months now and it has made a HUGE difference. No gluten for me forever! That stuff is evil when you are intolerant or have celiac disease. For the record I do not know if I have celiac or some other form of gluten intolerance because I refuse to go back on gluten to run the tests for celiac disease. It just ain't worth it. The pain, the bathroom dwelling, the inability to go anywhere for fear of not making it to the bathroom in time, the fatigue, and the severe arthritic pain, all this really does a number on your life.

I am getting pretty good at cooking gluten free, milk free and soy free. We also avoid the things everyone should avoid like hydrogenated oils, artificial sweeteners, artificial colors, artificial flavors, high fructose corn syrup, and nitrates. These things are all really bad for you and should be severely limited in all people's diets. I can make just about anything with safe ingredients and though they don't all taste exactly like the original, many are so similar the difference is not detected by those who don't know and others are just good in their own right.

In addition to avoiding all of those things, I have decided to lower my carb intake to 100g per day. The average person consumes around 300g per day, which is okay for some, but disastrous for others. This typical American diet can cause some people to become metabolically unstable, leading to wild blood sugar fluctuations and eventually diabetes. Diabetes runs in my family, I am overweight, my cholesterol is out of whack because of my thyroid, so I wanted to help control my metabolic responses a bit better. I do not wish to do Atkins diet or the like because I feel they are too restrictive and are not safe long term because of the ketosis that occurs. I simply want to help control blood sugars, a eat a clean, fresh, whole foods diet. Since I am already gluten free it really isn't that hard to limit carbs. I just focus on the meats, veggies and high fiber fruits, almond milk, nuts and avoid rice and potatoes. I also take supplements to fill in the gaps, it's really no biggie. Until I go out to eat that is, it is much harder to eat gluten, milk and soy free and low carb, but it can be done. Fresh green salads with eggs or meats are a great out to eat option as well as grilled meats and steamed veggies. Only drink water, all natural Crystal Light, or almond milk. I actually consume way less than 100g per day most days, but I allow that much so that I don't feel deprived, plus I also allow one day a week to cheat. I have been doing this for 3 1/2 weeks and now I have lost 9 lbs so far. Not bad if I do say so myself. I only need to lose about 15 more pounds then I can add in a few more carbs to level out my weight.

Wednesday, April 7, 2010

Collin Raye's granddaughter passed away

I posted a while back about Collin Raye writing a song about his granddaughter who was suffering with an undiagnosed neurological disorder. She has now gone on to be with the Lord.

Sunday, March 7, 2010

Two that I will miss

A dear friend and fellow advocate and the granddaughter she loved and cared for so much have gone home to be with the Lord this week. Teresa took on the responsibility of caring for her granddaughter, Skylar when her mother couldn't care for her complex special needs. The two of them were inseparable. The love between them was inspirational, they touched many lives. Skylar loved live to the fullest, despite her many challenges. Teresa loved ALL children and that love was evident from her loving care of the children placed in her care in her many years as a daycare director. She loved my kids and we loved her dearly and will miss them both. Summer camp just won't be the same without them. The two of them served the Lord together and now they will praise him together forever.

Monday, February 15, 2010

Please consider helping out

I have been communicating with the mom of these 2 precious children, C.J. and Cierra. They have an undiagnosed genetic condition that leaves them disabled. There mother is much like me in that she searches for answers and helps her kids any way she can. Her babies needed specialized beds but she couldn't afford them. She lost her job, like many people have faced and is unable to find work right now. She sought out help from organizations that help children with disabilities, but many of them require a specific diagnosis in order to help. Her children are like Katy and still don't have a diagnosis. She finally found an organization willing to help. Please consider donating to help these very special children get the equipment they so desperately need.