Why GFCF, Enzymes, etc.

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Registered: 07-02-2003
Why GFCF, Enzymes, etc.
10
Tue, 03-28-2006 - 9:47pm

Okay, I have not found any good information really explaining why I should try GFCF and what it does, how will it effect him, etc. Basically all I know is that it can help, but help with what? How do I know he needs it? What is the biological reason behind it? He has never appeared to have any digestion problems. He is very regular. He rarely gets sick. He never has stomach aches. What effects do casseine and glucose have on Autism Spectrum kids?

I've seen other people talk about it helping with verbal skills. Carlin is very verbal, always has been. His main issues are at school. He has problems with compliance, aggression, making bad choices, hyperactivity, over-reacting, inappropriate interaction with other children. My main concern is finding something that will help him manage his behavior.

What about DMG, B-6 and Magnesium, and Omege 3? How do they help? How do I know if we need them?

Are there any books or websites out there for me to read more on these biophysical methods? I know other people find they help but I can't find enough information to explain it all to me.

Thanks,

Melissa

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Registered: 04-11-2003
Wed, 03-29-2006 - 6:15am

If you want to learn about enzymes go to http://www.enzymestuff.com/ Intro FAQ about GFCF diet http://www.autismdiet.com/begfaq.html info about other biomed interventions http://www.autismwebsite.com/ari/treatment/treatment.htm

HTH's
Samantha

Samantha
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Registered: 01-19-2005
Wed, 03-29-2006 - 11:16am

Hi Melissa,

A book that gives a good overview of the different theories about biomedical treatments is "Children with Starving Brains" by Jaquelin McCandless. I know, the title is a bit melodramatic, but it does give a good overview of everything including the diet, supplements, enzymes etc. Another good book mostly about the diet is "Special Diets for Special Kids" by Lisa Lewis. I too recommend the "enzymestuff" website. It has info on all these things, not just on enzymes.

GFCF diet/enzymes are not necessarily for everyone. In fact, I think it actually only helps a small percentage of children, but for those it helps, it is worth the trouble. If your son does not have digestive troubles, is not prone to "spacing out," and is verbal, it may be he does not fall into this category.

I think that the diet tends to be of greatest help to children who do have digestive problems. One sign that there may be a problem (in addition to their bm's, general overall health etc.) is whether they self-select foods to things that are mostly dairy or wheat to the exclusion of everything else. If your child eats only cheerios, milk, mac and cheese, etc. and you find your child has a tendancy to be "spacey" and unresponsive following meals, then your child might be a candidate.

My son did have digestive troubles, a limited diet, very spacey, poor speech and was sick quite a bit. The diet did help him, as have the digestive enzymes. But he also had tons of early intervention, ST, OT, ABA. He needed it all. The diet helped him feel better, so he could concentrate and do better in therapy. At least, that is my opinion.

Supplements are kind of a separate thing. The book I mentioned above talks about that too. My son has also benefited from the supplements, but I think it is bc he did not get all the nutrients in his diet, as his diet was very limited.

If you go this route, you may also want to consult with a nutritionist in your area. I found this to be helpful.

HTH,
Katherine

iVillage Member
Registered: 10-03-2004
Wed, 03-29-2006 - 2:36pm

Actually, the child I have seen helped the most by GFCF did NOT have digestive problems, had lots of language, and is very OCD with Asperger's over-focus on interests --- and has huge behavioral problems, rage, attacking type behavioral problems. The diet has calmed him incredibly! Helped him to focus and relax. I have seen him go into rage after receiving wheat and sugar, he should NOT eat that stuff... Of course, at the time he had been wheat, sugar and dairy free for some time, so the size of reaction may also have been bigger because his system was clean. And he has also been extensively tested by DAN doctor/nutritionist, who said the results show VERY high sensitivity to wheat and milk.

Oh, and another girl, who has struggled with rages and meltdowns and went through over 3 years of many different drug therapy regimes that failed, has just recently cleaned out on GFCF and is drug and melt-down free! Everyone, esp. her poor parents, is just thrilled. She is, too. She also had no digestive problems and lots of language.

My son is helped with his attention by restricting his wheat and milk intake. He is just less spacey and not quite as sensory-stimulated. We are not rigid with the GFCF diet, but have now started the enzymes. And he does seem much more connected and able to process more of what is happening with him since starting the enzymes.

As always, the hard part is that he is receiving many other interventions as well, and so it is hard to pinpoint where the progress he makes is coming from. For us, GFCF/enzymes falls a little more under the "why not, can't hurt anything" area, also my dh is very lactose intolerant and had strong wheat and milk allergies when young. Recently, my son has been really under alot of stress, with changing schools mid-year. He is really able to process his thoughts and emotions better, is gaining more control. Is that because we started the enzymes, or just a natural progression? I can't say.

It may not be for everyone, but I always say why not try it and see? It is hard work to make the change, but I would rather experiment this way than with unproven drugs where noone can tell you in advance if your child will do well or get worse, and then might have dreadful withdrawals, thank you very much!

JMHO,

Sara
ilovenalcolm

iVillage Member
Registered: 07-02-2003
Wed, 03-29-2006 - 3:52pm

I guess I don't really understand the biology of it all. I get that some kids have trouble digesting these products and then they some how end up in the blood stream? What happens then? How does it cause they're spaciness or behavior problems. What is up with the whole opiates thing?

Is there medical evidence that a child is have problems digesting cassein and glutten? Can it be detected in blood tests or urine tests?

I'm not really into the try it and see approach. I want proof that he needs it. Removing some of the foods that I would have to would be some what traumatic to my child and I'd rather not put him through it unless it's necessary. It's also expensive which we have NO money right now. I just had to take his twin brothers off organic milk because I simply can't afford it.

So far the articles I've read online are very vague on why this is necessary. I will check out the books mentioned. I'm also going to contact some of the support groups here where the parent's are trying this.

Thanks,

Melissa

iVillage Member
Registered: 10-03-2004
Wed, 03-29-2006 - 4:22pm

Dear Melissa,

Where is little roses when you need her? She may be able to write a fair amount to answer your questions, right, lr?

Wouldn't it be nice to know what causes autism while we are at it? And how autism actually happens in the brain? And if vaccines had anything to do with it, and why some kids get it and not others? And how the immune system is involved in the first place? And why drugs are so iffy for our kids and there is no way to test in advance to know if SSRIs, etc, will help or hurt? And why the drugs help some kids and make others worse?

I know that the first kid I wrote about went through some testing for allergies, but I will need to ask the mother what kind and specifics for you, and I will ask her and write back what I find out. When so many interventions we are doing with our son has a minimum of real studied proof as to how or why these interventions work (therapeutic listening, RDI, SID OT, etc.) well, we are just so used to trying things to see how they work, etc.... And I am happy to say that we continue to see great progress. But I did draw the line at chelation, etc., too scary for me and not enough proof, plus some kids have died.

And frankly, the cost of GFCF is not really much more than a good balanced diet, and there are lots of alternatives to wheat and milk that are very healthy and tasty. We all enjoy the diet with no problems here.

But I will also say that if GFCF is going to work, you can see effects pretty quickly, like within the first week, if you want to try a period of time with no glutein or casein. So maybe plan a week with potatos, rice, meats, eggs, fruits, vegetables, and if the behavioral problems start disappearing rapidly, investigate more. Add things back and see. In these children this really worked with, it really was amazing how quickly the behavioral problems began to disappear!

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 07-02-2003
Wed, 03-29-2006 - 9:11pm

I think there is a big difference to seek out evidence that your child is having problems digesting certain products and wanting to know what causes autism are two totally different things. I'm not going to use an intervention with my child on blind faith especially when there should be evidence for something like gluttein and cassein causing problems in a child. I'm not really into psuedo-science. I will not take my child for acupuncture or other such treatments. I want something that is scientifically proven to possibly help. In theory, if a child is have problems digesting certain products there should be biological evidence of this other than just behavior problems and bowel movements. Someone in another post had mentioned having urine and blood tests. But this person was also talking about chelation and vaccines specifically causing the autism.

I'm so new at this all. My son was diagnosed just 2 months ago. How do I discern who is giving me good information and who are the quacks? I don't even know which professionals my son needs at this point. I am just fumbling my way through this. There is not one place to go to get guidance on where to go next. My major concern for my son is his behavior in school. At home he seems like almost a normal kid. He starts kindergarten in the fall and still has a really hard time managing his behavior at school. We are currently working on getting him into play therapy with a play therapist that specializes in "spectrum" kids. He also needs OT services for his fine motor skills and for his sensory integration (which I think is a huge part of behavior problems at school). In a few weeks we will have an appointment with the CARD Center at FSU. We are also working on Medicaid, SSI, and Children's Medical Services. I wish there was a blue print for getting help after you get a diagnosis. The child psych that diagnosed him basically told us to take him to Shands for more testing and she didn't even know how we went about doing that.

I'm sure you can feel the frustration in my writing. I just wish we could get some immediate releif for school.

Thanks for the information,

Melissa

Avatar for littleroses
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Registered: 03-28-2003
Wed, 03-29-2006 - 9:48pm
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Edited 4/1/2006 10:42 am ET by littleroses
iVillage Member
Registered: 03-26-2003
Wed, 03-29-2006 - 10:21pm

Welcome and (((HUGS)))

Entering the world of a parent with autism is never easy. Finding what to do and the right resources can be extremely frustrating as well and I know you are dealing with that now.

I won't get into the scientific or proof of one treatment or another because there really is so much information in both directions and so many types of treatments it really makes one head spin.

What it comes down to is what is right for your child and what is available to you. Diet and supplements are really some of the easier things to do (Believe it or not). I don't do GFCF but my kids are on an organic low sugar diet that has helped and is healthy. I really believe that there is just too much junk in our food and in life in general in current day america. I stay away from ALL chemicals and additives in food. I buy organic because there are more nutrients in it.

I also believe in an eclectic approach. We have been at this a while so my suggestion would be to start out small and pick one thing to do that is the biggest area of need to address. You mention behavior, here are some things that I have found helpful for that.

1 - cut the sugar and additives from his diet. I have some links to info on that if you like. There is lots of biomed stuff here too. http://www.asdrendrewolf.org/naturalremedies/archives/articles/avholiday.htm

2- Learn about behavioral techniques to help him. Some ABA techniques for positive behavior intervention would be helpful if you can get some support there. However a good place to start may be the book "The Explosive Child". I got a lot of good ideas from that book. Not all work with AS kids but there are really some great starting points.

3- social play group is a great idea.

4-If you want to go with supplements start with one at a time to see if it helps. I would recomend Omega 3's for a first supplement along with a good multivitamin. There are study's about Omega 3's with bipolar adults but there is evidence that it helps with many types of challenges. Make sure it is a high quality omega because low quality omega's may have mercury in them. Also, use fish oil not flax for this. Flax has been know to cause mania with some kids.

Renee

Photobucket
iVillage Member
Registered: 01-29-2004
Wed, 03-29-2006 - 10:41pm

Hi, I am lurker jumping in here...

My neuropsychologist and our family dr neither of whom are quacks, both suggested taking out cassein from my son's diet. We did it slowly over 2 months. First we eliminated milk and yogurt and then cheese and so on. So he didn't just have to drink water, I have started buying orange juice. The hardest thing for him to give up was ice cream but sorbet does the job. It has been a change but we it hasn't cost us any money. We are trying this for 6 months and then adding the dairy back in to see. So far I have a kid who can better concentrate and his rages have diminished considerably. The neuropsychologist said that the cassein does not cause the rages but can be a contributing factor. I am going to try going gluten free this summer when we grill more and I tend to use more fresh food and less packaged I think it will be easier then.
Heather

iVillage Member
Registered: 04-11-2003
Thu, 03-30-2006 - 8:31am
If you want to test before doing GFCF you can use this http://www.gpl4u.com/gluten-casein.html
Samantha