(03-05-2011, 06:05 PM)AngelaVA Wrote: Not many posts in this forum, just curious if we are the only ones doing CFGF and biomed treatments?

Hi! No...you are not the only one doing this! I apologize. As Dan mentioned, my life is pretty insane and I do not check this forum as often as I should.

My 9yo ASD daughter has been GFCF soy and nut-free for 4 years and I've also been GFCFSF for about 2 or so. It has made all the difference for her. I, too, had issues in the past with people who were unfamiliar with the diet and were somewhat critical or made comments before thinking, but I learned to let it go, learned to know when to make comments, and I certainly learned some facts so when the traditional pediatrician made "ignorant" comments, I could answer back with intelligent/reasonable answers and comments of my own. Mostly, I realized that not everyone was going to support me and I decided that was okay. I knew that I'd done my homework, was feeding my daughter properly, that this was working for us and was the right decision for us and I didn't need their support.

RE: a supportive Dr., I use a DAN! (Defeat Autism Now!) Dr. to help with with her biomedical needs and issues/treat her ASD and the traditional ped for typical childhood illnesses. I will say that since starting the diet and biomed protocol, she only goes in 1x year for her annual checkup. (Except this year when she had the flu). This year the Ped requested a note from her DAN for the files so he could see the details about the "what" and "how" of her treatments. The DAN dr has been wonderful...when he heard about the troubles in the beginning of the year with school and her Aspergers/IEP/kids in the classroom, he wrote a supportive letter about what her issues are, what the school could do and how they could help her.

I will tell you that even with a DAN Dr, you have to read labels. I've discovered that when it comes to medical care, there is no sitting back and letting the dr treat me or my daughter. I have to be as proactive about our care as the Dr treating us. In reality, they are only human and can't know everything about everything, even though we've been trained to believe they can.

<>>>There is a strong genetic component in sensory problems, and my father's side of the family has all kinds of history of things like autism, SPD, and related things like dyslexia. And since there are a lot of food allergies there, too, I'm a bit concerned and wonder how that all links in. <>>>
I've come to see there is a very definite link and while removing intolerant foods may not always "cure" the person, it can certainly improve their symptoms. I find this to be another good book on the topic of biomed treatments:
“Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Dr. Bryan Jepson with Jane Johnson

Anna in MD

(03-05-2011, 06:05 PM)AngelaVA Wrote: Not many posts in this forum, just curious if we are the only ones doing CFGF and biomed treatments?

Ha ha here I am again - well i am including this in my sons process ... i think ... is that the hair strand testing for heavy metals, urine test etc etc? Glad to hear you have had good results ... i am of the wholistic approach of leaving no stone unturned.

---

(04-12-2011, 09:29 AM)aletaw Wrote:

(03-05-2011, 06:05 PM)AngelaVA Wrote: Not many posts in this forum, just curious if we are the only ones doing CFGF and biomed treatments?

Hi! No...you are not the only one doing this! I apologize. As Dan mentioned, my life is pretty insane and I do not check this forum as often as I should.

My 9yo ASD daughter has been GFCF soy and nut-free for 4 years and I've also been GFCFSF for about 2 or so. It has made all the difference for her. I, too, had issues in the past with people who were unfamiliar with the diet and were somewhat critical or made comments before thinking, but I learned to let it go, learned to know when to make comments, and I certainly learned some facts so when the traditional pediatrician made "ignorant" comments, I could answer back with intelligent/reasonable answers and comments of my own. Mostly, I realized that not everyone was going to support me and I decided that was okay. I knew that I'd done my homework, was feeding my daughter properly, that this was working for us and was the right decision for us and I didn't need their support.

RE: a supportive Dr., I use a DAN! (Defeat Autism Now!) Dr. to help with with her biomedical needs and issues/treat her ASD and the traditional ped for typical childhood illnesses. I will say that since starting the diet and biomed protocol, she only goes in 1x year for her annual checkup. (Except this year when she had the flu). This year the Ped requested a note from her DAN for the files so he could see the details about the "what" and "how" of her treatments. The DAN dr has been wonderful...when he heard about the troubles in the beginning of the year with school and her Aspergers/IEP/kids in the classroom, he wrote a supportive letter about what her issues are, what the school could do and how they could help her.

I will tell you that even with a DAN Dr, you have to read labels. I've discovered that when it comes to medical care, there is no sitting back and letting the dr treat me or my daughter. I have to be as proactive about our care as the Dr treating us. In reality, they are only human and can't know everything about everything, even though we've been trained to believe they can.

<>>>There is a strong genetic component in sensory problems, and my father's side of the family has all kinds of history of things like autism, SPD, and related things like dyslexia. And since there are a lot of food allergies there, too, I'm a bit concerned and wonder how that all links in. <>>>
I've come to see there is a very definite link and while removing intolerant foods may not always "cure" the person, it can certainly improve their symptoms. I find this to be another good book on the topic of biomed treatments:
“Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Dr. Bryan Jepson with Jane Johnson

Anna in MD

---

(04-12-2011, 09:29 AM)aletaw Wrote:

(03-05-2011, 06:05 PM)AngelaVA Wrote: Not many posts in this forum, just curious if we are the only ones doing CFGF and biomed treatments?

Hi! No...you are not the only one doing this! I apologize. As Dan mentioned, my life is pretty insane and I do not check this forum as often as I should.

My 9yo ASD daughter has been GFCF soy and nut-free for 4 years and I've also been GFCFSF for about 2 or so. It has made all the difference for her. I, too, had issues in the past with people who were unfamiliar with the diet and were somewhat critical or made comments before thinking, but I learned to let it go, learned to know when to make comments, and I certainly learned some facts so when the traditional pediatrician made "ignorant" comments, I could answer back with intelligent/reasonable answers and comments of my own. Mostly, I realized that not everyone was going to support me and I decided that was okay. I knew that I'd done my homework, was feeding my daughter properly, that this was working for us and was the right decision for us and I didn't need their support.

RE: a supportive Dr., I use a DAN! (Defeat Autism Now!) Dr. to help with with her biomedical needs and issues/treat her ASD and the traditional ped for typical childhood illnesses. I will say that since starting the diet and biomed protocol, she only goes in 1x year for her annual checkup. (Except this year when she had the flu). This year the Ped requested a note from her DAN for the files so he could see the details about the "what" and "how" of her treatments. The DAN dr has been wonderful...when he heard about the troubles in the beginning of the year with school and her Aspergers/IEP/kids in the classroom, he wrote a supportive letter about what her issues are, what the school could do and how they could help her.

I will tell you that even with a DAN Dr, you have to read labels. I've discovered that when it comes to medical care, there is no sitting back and letting the dr treat me or my daughter. I have to be as proactive about our care as the Dr treating us. In reality, they are only human and can't know everything about everything, even though we've been trained to believe they can.

<>>>There is a strong genetic component in sensory problems, and my father's side of the family has all kinds of history of things like autism, SPD, and related things like dyslexia. And since there are a lot of food allergies there, too, I'm a bit concerned and wonder how that all links in. <>>>
I've come to see there is a very definite link and while removing intolerant foods may not always "cure" the person, it can certainly improve their symptoms. I find this to be another good book on the topic of biomed treatments:
“Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Dr. Bryan Jepson with Jane Johnson

Anna in MD

WOW thank you so very much for sharing this!!!

We did do the hair strand some other tests for heavy metals but I didn't find them real productive because the results don't seem to compliment each other very well (they all tell different things). The conclusion the doctor made is that she is retaining heavy metals because of the way her hair tests came out (something about a c shaped profile of the metals heaviest vs lightest) I'm not sure I really understand completely. At this point I am categorically not interested in medical chelation I feel like it's too intense for her needs however I've seen some very encouraging results from using lots of cilantro in the diet from smoothies and such and bentonite clay especially with regards to improving muscle tone and energy.

I think the diet is really the first thing though, get them on a couple supplements, like Cod Liver Oil, vitamin D if they are sick a lot, a good multi vitamin (nordic berries are our fav) to get give them a boost to get through it and then go for the elimination diet. Unfortunately since gluten free is now very popular there is a lot of crap food out there that is gluten free. Good for helping your child make the transition or for making them not be left out at a birthday party or something but terrible nutrition is going to thwart the positive effects of a special diet. We are huge fans of the Traditional Foods menu mailer, all her foods are gluten free with a casein and soy free option. She give you a weekly menu plan and shopping list which makes my life so much easier! I would highly encourage trying the bone broths as she describes, very healing and nutritious. http://www.cookingtf.com/

<>>>We did do the hair strand some other tests for heavy metals but I didn't find them real productive because the results don't seem to compliment each other very well (they all tell different things). <>>>

You are wise to be cautious with chelation, not because chelation is a bad thing, but chelation without understanding is certainly not a good thing. The test is not meant to be interpreted literally, but rather how the elements are ratioed to another and it's the "counting rules" that provide 'meaningful' information. For example, the fact that mercury is not found in the hair test does not necessarily mean that there is no mercury in the body, but rather that the body is not excreting it due to a blocked ability caused by the presence of mercury...or that there is no mercury present. Which answer it is depends on the ratio of other elements. What company ran the test? If it's Doctor's Data, then the book "Hair Test Interpretation" by Andrew Cutler, PhD, P. E. is very helpful.

<>>>I think the diet is really the first thing though, get them on a couple supplements, like Cod Liver Oil, vitamin D if they are sick a lot, a good multi vitamin (nordic berries are our fav) to get give them a boost to get through it and then go for the elimination diet.<>>>

For what it's worth on the Vitamin D use, the Vit D found in supplements (and food) is not an actual vitamin but a seco-steroid and like any steroid, can reduce inflammation and inhibit the innate immune system. It is the reduction of inflammation and subsequent reduction of symptoms that people think this is a miracle "vitamin" but I am personally concerned that the long-term use of it may create bigger problems down the line. I am well aware that I am in the extreme minority of people with this opinion and as with any opinion...take it or leave it!
http://mpkb.org/home/pathogenesis/vitamind
http://mpkb.org/home/food/vitamind

Anna in MD

I am definately exploring this as part of a wholistic approach. Very interesting area :-)

So where and how do I start??

I think where to start depends on where you are right now. What kind of cook are you currently? Do you do a lot of box mixes and things are do you cook most things from scratch? Do your sons only eat 2 or 3 different foods or are they picky only about certain things? What is your grocery budget like and do you have the flexibility to increase it some or does it need to stay the same in order to keep paying your other bills?

I'm somewhere in the middle with being a cook. I hate to cook but obviously someone has to do it. I cook as simply as I can. I used to do a lot of box mixes when the kids were younger, but haven't in about 2-3 years, since they didn't like them. My younger son has become increasingly a picky eater over the last 2-3 years, so I tend to cook mostly foods he likes. He'll eat broccoli, carrots, corn, or beans. So I'll steam the broccoli or carrots with most of our meals. Throw in corn or beans now and then. He likes long spaghetti with sauce and meatballs. The main meat he'll eat is chicken. Mostly a certain brand of frozen breaded chicken that I bake in the oven, but we can get him to eat grilled skinless chicken though he complains with almost every bite (covered in ketchup). Mondays and Tuesdays we have appointments from 5-6pm so I usually will get them Subway sandwiches on one of those days. He'll eat ham, but complain about it. He used to eat white basmati rice but won't anymore. He'll eat fried rice but eat it one grain at a time. Any breads we eat are whole wheat or whole grains. I'm trying to reduce white flour and white sugar in our diets, and get more fiber into our diets.

I'm fairly flexible with the grocery budget. Plus I tend to stock up since we don't have any grocery stores in our town (nearest is 20 minutes away). Hubby jokes about the grocery store in our basement! With our chest freezer and pantry shelves.

My younger son has been having stomach issues since the end of August. I've brought him to the doctor twice. He goes to the school nurse's office almost every day because of the stomach pain. The doctor said the next step is a blood test. One of the things is to test for Celiac disease (gluten reaction). I was just looking it up and was shocked at how many of the things fit--at least for myself and my 2 boys. I am definitely going to try it now. Though it still feels overwhelming to have to go through my pantry to see which foods are no longer allowed.

Lynn based on what you said here is what I would suggest- if you don't have a crock pot get one, you should be able to get a decent 6 quart one for $30-$40 at Target. Make a whole roast chicken in it at a time so you have plenty of chicken since that what he likes. Make a gravy with the juices if you can they have a lot of gelatin in them that is very gut healing. If you save the bones after a few chickens you will have enough to make stock which is great for gut healing too but if that is too cooking intensive ignore that for not. Buy lots of the veggies he likes (not sure if beans are green beans or kidney beans and such) he needs to have them frequently to get fiber in his diet, try serving some raw carrots, cucumbers, bell peppers ect with his meal if there is any chance he will eat it and they wont' cause him to reject the whole meal. For breaded chicken coat boneless chicken by soaking it and beaten egg and then rolling it in almond meal, salt, and pepper and fry it in organic coconut oil (can use another oil too but coconut oil is really good for gut healing). My kids will eat this as a packed lunch or dinner they dont' seem to care that it's not heated. Buy a few things that are naturally gluten free that he likes - if he eats fruit, buy a lot of it, plain potato chips usually are gluten free (check labels) costco has some good apple chips if he likes those. You also need something for breakfast, will he eat eggs with bacon or sausage and fruit, or maybe hashbrows with eggs or some kind of meat? You should be able to find casein free spaghetti sauce and Tinkyada makes pretty good GF spaghetti noodles. Start with these foods. Expect him to be very hungry and not feel satisfied and want to snack tons on foods he likes and can still have. Some kids have other strange reactions or temporarily get worse, but it's a sign the diet is working and you should continue.

I would also buy this book and start going through it for recipes that seem like good bets http://www.amazon.com/Kid-Friendly-Autis...203&sr=8-1

I would suggest either Udi's or Pamelas BREAD mix (pancake mix has casein) for bread, but I would not intro GF bread until he's a week or so into the diet or it will taste too weird. Same with any cheese subs, wait awhile or they will taste way too strange.

There are lots of premade GF stuff and GF treat recipes which is great of not feeling deprived but for the best nutrition I would focus on foods that are healthy and naturally GF, fruit, veggies, beans, meat, nuts (raw - be careful with roasted) ect.

<>>>So where and how do I start??<>>>

Where you have concerns about celiac disease, definitely have the tests run before you pull gluten. Though the celiac blood test is somewhat unreliable due to the frequency of false negatives, gluten must be in the system in order for the test to be valid; if this test comes back positive, it is definitely positive.

As for implementing the diet this essay may help you get your bearings:
"GFCF Diet: What, Why, How: http://free-mealer.blogspot.com/2008/05/...y-how.html

Another helpful book for those just starting out:
“The Autism & ADHD Diet: A Step-by-Step Guide to Hope and Healing by Living Gluten Free and Casein Free (GFCF) and Other Interventions” by Barrie Silberberg

I started with pulling gluten first, then casein but I encourage new people to start with casein as it leaves the system faster than gluten and often positive changes can be seen within a week or two. I sat down and wrote out a menu for a week then looked for ways to make it legal. As the week progressed I made more and more ingredients "legal". This period of change can be a difficult time as some children experience food rejection, withdrawal reactions and can regress in behavior. While difficult, withdrawal/regression is actually a good sign and confirmation you are on the right track. (Not all children experience regression/withdrawal) You should be encouraged to stick with your decision and see it through to the end. It will be helpful for you if you can figure out a way to keep a food journal. Note the foods and time given and any reactions and times of the reactions and any other noteworthy physical or emotional changes. Over time you should be able to note connections to foods if there are any to be found.

Where you have removed most box mixes, you are already a jump ahead. It's helpful to think 'basic meals': meat, veg, fruit, starch with your starch being either potatoes or legal grains: millet, rice, quinoa, buckwheat/kasha, teff, corn. There are mixes out there for most any of the breads and breakfast foods and there are frozen breads/pastries/pizza doughs. These are more expensive than their wheat counterparts so don't do bulk buys until you know for sure your children like them and do not react to them.

Oh Boy! There is more to say about how to start, but it could be overwhelming so be sure to ask questions when you have them... Think of this transition as a process rather than something that has to be done in a day. You'll have good days and bad days but ultimately you should see progress.

Anna in MD