Talk to me about supplements and gfcf diets.

TwinMama83 · February 2012

DS just got a PDD-NOS diagnosis and now I'm doing all sorts of research. I'm reading some things about mega doses of vitamins, adding probiotics, and gluten free-casein free diets. (FWIW, DS is allergic to milk, soy and beef so we are already on a casein free diet and have been for about 8 months. He is still having some GI issues though but his GI isn't concerned.)

I have barely had time to process the fact that we've gotten the dx let alone ask these questions to an MD. Just wondering if any of your LOs take any of these supplements or are on a GFCF diet, or if you just have any reliable info to share about it. TIA!

hopanka · February 2012

You should consult a DAN! dr. Or a Naturopathic Dr. who specializes in gut healing for ASD kids. They will likely do tests beforehand. The most basic is OAT (organic acid test) that will show basic deficiencies and imbalance and you go from there. Experimenting with supplements is never a good thing without proper testing. Since you are already casein free, removing gluten shouldn't be that difficult, but it still takes effort and consistency. There is a mom on this board whose blog has the diet down to a science. And the way she does it is the right way. There are a lot of processed GFCF foods that are no better for your body than regular foods. Hopefully, she replies to your thread. Her blog has a ton of recipes that are highly nutritional, tasty and gut healing.

torrey111 · February 2012

I will just warn you that some on here will share their thoughts to be weary of all of the diets you read about to help your child with his dx. That is to say, that really, the only scientifically-based, positive/significant outcomes come from behavior modification/training and meds (should his condition one day show to be comorbid with something else- ADHD, for example).

We, in fact, spent a lot of money on expensive supplements and a new therapy that wasn't covered by insurance. I kick myself now for wasting the time and money we did.

GL and keep us posted should you find something that works for your child. There is great power in the sharing of information!

carlinlp · February 2012

You can do a lot with diet and nutritional healing. Quality nutrients, high quality fats and EFA, fermented foods, healing bone broths have all been very beneficial for my entire family. GAPS has a high success rate but it's a two year commitment. Most people who try GAPS continue to eat that way for years and years bc they feel so much better. We used homeopathics, nutrition, chiropractic, acupuncture and a methylation specialist with great success.

hopanka · March 2012

I dont think the social challenge really matters here. OPs son already HAS allergies to dairy. Its no more challenging than kids with peanut or other allergies. When you have it, its YOUR normal way of living and doesnt mean your social life has to go out the window. You do learn to adapt because you have to. Period. Plus, OPs son has GI issues still, so he seems like a good candidate. Wouldnt you want to heal your childs GI tract, if they had chronic problems?

malcivar · March 2012

hopanka:
I dont think the social challenge really matters here. OPs son already HAS allergies to dairy. Its no more challenging than kids with peanut or other allergies. When you have it, its YOUR normal way of living and doesnt mean your social life has to go out the window. You do learn to adapt because you have to. Period. Plus, OPs son has GI issues still, so he seems like a good candidate. Wouldnt you want to heal your childs GI tract, if they had chronic problems?

Totally agree. DS doesn't have any food issues yet but I do. No eggs (not by themselves, not cooked into anything, no way, no how) and limited dairy and I've had it all my life and you're right - it's YOUR normal way of living and you find ways around it - yep it comes up and you have to answer a million questions but it's never a bad thing, more of like a "wow, so how do you do it?" kind of thing.

Us, personally, we're not going the diet route but I've read that for those that stick with it, they do see some improvements so good luck and let us know how it goes!

carlinlp · March 2012

I would recommend checking out Julie Matthews Nourishing Hope. Julie is one of the best nutritionists there is. Her understanding of Autism and the detox pathways is absolutely astounding. What I love about her is that she doesn't support or endorse one specific diet. Her book outlines common issues and nutritional support for each and it can really help you pick the best diet for your child. Her book is, by far, one of the best healing books I've encountered. She also has a ton of free resources, tips, recipes, etc. on her blog.

I've said it before and it bears repeating: good nutrition will never be wrong!

TwinMama83 · March 2012

Thanks so much for the info. I really appreciate it. My son is only 19m right now so at this point we aren't too concerned about the social issues. I SAH with him and have 100% control over what he eats. I work closely with a nutritionist to ensure that he gets the nutrients he needs from a milk free diet so I feel like she could also help me manage a GF diet nutritionally. Also, we had both kids tested for Celiac Disease and he doesn't have CD but he is a carrier of the genes that lead to CD so who knows? Maybe a GF diet would be a good thing for him.

Also, I looked for a DAN! Dr and was lead to the ARI website which apparently no longer lists the Drs. Does anyone have another way to get the list?

And thanks for the book recommendation! It has a 5 star review from other Moms on Amazon.

TwinMama83 · March 2012

Nevermind. I found the list:

https://www.healing-arts.org/children/amyholmes.htm#danlist

MaxandRuby · March 2012

TwinMama83:
Thanks so much for the info. I really appreciate it. My son is only 19m right now so at this point we aren't too concerned about the social issues. I SAH with him and have 100% control over what he eats. I work closely with a nutritionist to ensure that he gets the nutrients he needs from a milk free diet so I feel like she could also help me manage a GF diet nutritionally. Also, we had both kids tested for Celiac Disease and he doesn't have CD but he is a carrier of the genes that lead to CD so who knows? Maybe a GF diet would be a good thing for him.
Also, I looked for a DAN! Dr and was lead to the ARI website which apparently no longer lists the Drs. Does anyone have another way to get the list?
And thanks for the book recommendation! It has a 5 star review from other Moms on Amazon.

While he may not have CD, he could still be gluten sensitive. 2 different things. I am supposed to be GF but I am not because I find the diet difficult but I also was not diagnosed until I was in my 20s and pretty set in my food eating ways coupled with I don't serious side affects from eating gluten. Anyway, if you want to do GFCF I don't think it would be too much of a transition for you since you are doing half of that diet now anyway. You will need to learn the hidden sources of gluten to ensure you follow the diet 100%. And anything that says "wheat free" does not equal "gluten free" just so you know. :-) GL with the diet!

lindzed · March 2012

Just wanted to add in you may want to ask around locally about DAN! Doctors. I found a website, but then discovered there were more locally by asking around. They are very expensive and don't take insurance in our area which is an issue. Please keep us updated if you do make any changes I would love to hear the responses.

Talk to me about supplements and gfcf diets.

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