GFCF and yeast free....help me!

[APToddlerMama]

So, I've posted about my son on here a few times. Basically, we don't know what is going on with him, but something isn't right. SPD, ASD, Apraxia, have all been tossed out as possibilities, but he is only 21 months old. He definitely has sensory issues and is extremely delayed in his speech and language skills. Behaviorally, he is soooo aggressive, and in general, he is crabby 24/7 and I really do mean 24/7. I have worked with kids my whole life and I don't know that I've ever met a child as cranky as he is or as aggressive who doesn't come from a severely dysfunctional home. He is changing everything I ever thought or assumed about why kids are aggressive/crabby.

Anyhow, there are days when I don't think he's on the spectrum, and then there are days when I am very worried that he is. I have worked a great deal with kids with special needs, but it is harder to be objective when it is your own child. Eye contact sucks lately although I remember it being good before, doesn't respond to name frequently (though my parents say he responds as much as me and my siblings ever did (eye roll...think they are in denial)), and is making no progress with babbling, etc.

I have read some info on Dr. Bruce Semon's website regarding GFCF and yeast free diet to "stop/reverse" autism. He has this whole theory about it being caused by "toxins" in the diet. He wrote the book "Feast without yeast" if anyone is familiar with him. Part of me thinks that he is just trying to make money, and the other part of me is very intrigued and wants to try it but I don't want to be a sucker trying to "heal" my kid with things that aren't going to work and miss something that is going to work.

So, what do you all think about the whole GFCF and yeast free diets? Are they worth doing without an ASD diagnosis? Do you think it can actually prevent autism? Does your child have to be on this diet for the rest of their lives? And...if you are doing GFCF with success, what about tiny traces...like I've heard toilet paper rolls can have gluten on them. Is this actually a problem? Is a tiny bit of gluten a smaller problem than a larger quantity? Any help would be very appreciated....

Oh...and anyone have a child with higher but still "normal" lead levels...?

[heatherdeg]

I know you and I don't have good history, but this is actually something I have information on that may help you. I hope you can put our differences aside and read what I have for you.

My son was flagged for ASD VERY young and had higher than acceptable, but not high enough to be reportable lead levels (which we quickly got under control). One of the things they had us do to help with the lead was to give calcium supplements so that his body wasn't seeking the lead in the environment. I honestly don't remember the connection--something to do with the bone marrow (this was 5 years ago).

GFCF is very popular in the autism community. Many kids respond to it and some just don't. There are two really good books that might help you understand the nutrition-neurology connection at a truly functional level that might make you feel more confident about why these things work the way they do. The first one is: "Breaking the Vicious Cycle" by Elaine Gottschall. The first 40 pages are explaining digestion and absorption. She writes to help people with Crohn's actually, but the information is an excellent starting point to understanding the whole process.

Once you've read that, Karen DeFelice's "Enzymes for Autism & Other Neurological Disorders" is good for explaining the rest. (Her intro or Preface should note the chapters that are about her personal experience so that you can skip them and get to the "necessary" info and I suggest you do this as I found her personal stuff to be so off the wall that if I'd read them first, I probably wouldn't have trusted her info). Don't let the title scare you off: most of the book is explaining the process so that you can understand her answer/"cure" (which is enzymes--which also don't work for everyone).

These were the two books that really made me far more comfortable defending and explaining our diet choices for our son in an educated and informed way.

Our son reacted SIGNIFICANTLY to dietary changes and fish oil (and I know that Omega 3s specifically are popular with the apraxia community). He has gone from suspected cerebral palsy, through the autism spectrum to a 6yo who just had his spectrum diagnosis lifted but has remaining auditory processing problems and is flagged for ADHD (which may be a visual convergence problem--which presents as ADD/ADHD--because his eye contact still SUCKS). He has had every therapy I can think of other than physical (Speech, feeding, OT, OT-sensory, relationship, AVB, ABA) from 11mo through 3yo and then once the district picked up, he had speech and OT. He just this summer tested out of those services (he actually qualified on the auditory processing, and they are finishing providing 49 hours of "owed" OT). He had mild seizures (that appear to have disappeared), "Reactive Airway Disorder" (KING of croupe, collapsed lung after birth, etc.) that ceases to be a problem despite not doping him up on the daily inhalant plus a "illness" inhalant, and although he continues to have a mild immune deficiency he has only ever had one hospitalization (which in retrospect, was panic on our part). I honestly think the bulk of this is diet-related... for OUR kid. Add to it that he had such horrible constipation from 8mo-13mo that his ped was ordering inpatient feeding therapy because she said that if it went on that bad any longer, he risked permanent nerve damage in his anus (and may never feel an oncoming bowel movement). We asked for a month as EI feeding therapy was just starting (and really, it was our call as parents anyway) but we removed gluten that month and voila--constipation problems gone. We're talking it took two people to help force my son's poop out.

GFCF is popular in the ASD community probably because your body uses the same enzyme to process both (see Sally Fallon's "Nourishing Traditions" for this info if you're interested--another book where you read the first 63-ish pages and then it's a lot of recipes). The thing is, we've been told by more than one gastro that 80-85% of the kids that react to casein (the dairy protein) also react to soy. So if you remove dairy and replace it with soy but see no change--most people think "Oh, they don't react to dairy because there was no change when I removed it". But the reality is they may be reacting to both.

As for the yeast, I definitely know it's a common problem; but it's wise to only tackle one aspect of the problem at a time. And to be honest, it's best to focus on one irritant at a time so that you know which one is causing the problem. That being said, in your case I might consider removing gluten, casein and soy for 2-3 weeks and then reintroduce one for 2 weeks to look for a change to rule them out that way. But you're in such a state with your son now that it's worth doing it a little "backward" this way.

Also, many children have a "threshold" where under the threshold, they can function fine. So my son can tolerate a certain amount of gluten. But if he ate it every day, you'd see a drastic change at about the 4-day mark. So when reintroducing, some kids may take a week of eating the food before you see a change.

It's worthy to note that while GFCF gets a LOT of "press", the reality is that kids can react to any food irritant. GFCF is just the more common combo. In our house, we were GFCF and once we removed the soy, our son had 10 months worth of developmental gain in 10 weeks (he was being followed at 3 month intervals at that time). When we removed corn, his behavior changed like night and day. When we added fish oil, he went from 6 hours of fitful sleep out of every 24 (something all the specialists told us "comes with the territory" of kids in the spectrum and to "get used to it") to sleeping 9-10 SOLID hours each night PLUS adding a 1-3 hour nap daily (he was 3-1/2 years old and the change happened within a week--I honestly thought he was getting sick).

I hope this helps.

[sbgrace]

We did gfcf and soy free (and corn and yeast for that matter for most of it) for 2 years without any changes. I kept with it because I knew something about food was bothering my son. The last year+ we did casein free SCD diet. It was a disaster for my son health wise. As it turned out his underlying issue was actually metabolic and the food that was hurting him was fat. The SCD went way too high fat and protein for him.

But diet does help a portion (significant perhaps) of kids. My only caution is you do it with balance. You need a balance of carbs/fat/protein and the more restrictive the diet (especially true with stuff like SCD) the more danger there is in getting out of balance. I've met other parents who had kids with unknown metabolic issues and got in a mess with diet.

We're doing enzymes (houston enzymes) instead though it's for digestion because casein and gluten don't bother my child. His brother is casein free (neurotypical but allergy issues) though so our meals are casein free and we eat gluten free (gluten is hard to digest for everyone and allergy brother doesn't need to be handling wheat right now anyway). Andrew (my spectrum kid) does have yogurt every day and cheese about once a week. Enzymes is a way to get some of the gfcf benefit without the diet for some people. It is also a way to start and see if you see changes and that might give you a clue about whether going all out for the diet might be worth it.

When we did gfcf I was careful about trace in terms of things like playdough and stickers and contamination in the kitchen. I didn't worry about rolls of toilet paper though.

I do not personally believe that going gfcf is going to cure a child of autism or prevent it. I think autism is much more complex than that. However, I do think that foods like gluten and casein may be a factor for a particular kid. If his body can't handle glutamines and you remove a huge source of them you will see improvement because he'll feel better. And that is no small thing.

[APToddlerMama]

Thank you both! I appreciate it. One other question if anyone reads this...if you did yeast free diets with your kiddo, were they also taking Nystatin for an extended period of time? This has been suggested and I don't know how comfortable I feel about it.

[BookGoddess]

Nystatin is quite safe. It doesn't have systemic effects. It stays in the GI area. For yeast issues, we've used Diflucan with very good results. Now it can affect liver enzymes, but our doctor orders routine bloodwork to make sure the medication isn't adversely affecting DD and it hasn't.

[nayma]

i feel like the changes i've seen from gluten removal have been huge. can i prove that it was the gluten? no, but i'll gladly give up donuts (lol) for a few more months to make sure this is what is causing her light to shine so much brighter.
and i don't mean to hijack your thread at all, but heather you mentioned soy removal and fish oil addition. i think my daughter doesn't do well with soy, and does benefit from fish oil, but how do you find a fish oil that's truly soy free???? please p.m. me. thanks so much!!

[APToddlerMama]

Originally Posted by nayma

i feel like the changes i've seen from gluten removal have been huge. can i prove that it was the gluten? no, but i'll gladly give up donuts (lol) for a few more months to make sure this is what is causing her light to shine so much brighter.
and i don't mean to hijack your thread at all, but heather you mentioned soy removal and fish oil addition. i think my daughter doesn't do well with soy, and does benefit from fish oil, but how do you find a fish oil that's truly soy free???? please p.m. me. thanks so much!!

I'd like to know that too actually so thanks for asking! And...we have shellfish allergies in our family, so does this become an issue with fish oil supplements?

[heatherdeg]

Oh wow... I honestly don't know. We use Nordic Naturals and this is what they say about soy sensitivity and fish oil:

If a person is sensitive to soy, can they take fish oils that contain vitamin E?

Vitamin E is an important addition for fish oil because it helps preserve fish oil freshness (along with other important manufacturing factors). Fish oils, like all liquid oils, are subject to becoming oxidized, and vitamin E is a very effective and natural antioxidant (for fish oil and for people!). Most of the time, people with sensitivities to soy can consume vitamin E without worry, even if it's originally derived from soy. Vitamin E is an oil (a fat-soluble vitamin) and, for supplements, is purified to be 100% pure vitamin E—no protein components [note: the allergen in a food is usually the protein (e.g. gluten in wheat, casein in milk)]. It is always a good idea to consult with your healthcare practitioner before beginning a supplement regime.

NN is derived from sardines and anchovies--but we use the adult version. The children's version is derived from Cod, I think. So I'm not sure if that would affect shellfish allergies.

[APToddlerMama]

Thanks...maybe we'll just try and see because he has no known fish allergies at this time...just run in the family.

[nayma]

thanks, too! i did find a soy-free fish oil, but it's cod liver, and if i gave dd enough to attain the correct omega-3 dose, she'd be saturated with vitamin A and D. not good. we did NN before, and she certainly didn't react in the way she does to other ingested soy (a face rash, etc.). hopefully NN is right. that'd be awesome .

[APToddlerMama]

Has anyone tried any of the tests from this place? http://www.greatplainslaboratory.com/

If you did, was it helpful or is this just some sort of scam?

Were you able to do any sort of tests to find out if gluten/casein were issues or did you just have to take them out of the diet and see what happened?

[BookGoddess]

It's a reputable lab. We've run various tests through them and our medical insurance paid for those tests.

Before we implemented the diet, we didn't first test to see if gluten or casein were an issue before removing them. We went cold turkey and removed them without any testing.

[APToddlerMama]

Originally Posted by BookGoddess

It's a reputable lab. We've run various tests through them and our medical insurance paid for those tests.

Before we implemented the diet, we didn't first test to see if gluten or casein were an issue before removing them. We went cold turkey and removed them without any testing.

Can I ask what tests you ran and how you got insurance to pay for them? Who ordered them? I'd really like to do it. Can you do it even after removing gluten? Thanks

[BookGoddess]

That lab has a form, in the packet of forms you'll get when you order a test from them, which asks for your insurance information. You make a copy of your insurance card and mail it back to them. You have to give a credit card as back up or write in the form that if your insurance won't pay to call you for your credit card information. I have a BCBS PPO. I gave the information when I submitted the tests to Great Plains. A few days later, Great Plains called me to say they've had trouble getting my insurance to pay for the tests. So I gave the credit card. But actually they didn't have to use my cc. My insurance ended up paying for about 80% of the test. I paid a small amount but it wasn't much. The tests were ordered by our DAN doctor, but any MD or ND should be able to order the tests.

Let's see, I think we did the organic acid test also called an OAT. It's really worth it. It gives a good picture of various body processes. You have to collect the first morning urine. We've done stool tests and plasma food sensitivity testing too.. I think you can test the sensitivity to gluten even after you've removed the gluten for a while although if many months have gone you may see a lower sensitivity number like a +1 instead of a higher one like +4.

[heatherdeg]

Originally Posted by nayma

thanks, too! i did find a soy-free fish oil, but it's cod liver, and if i gave dd enough to attain the correct omega-3 dose, she'd be saturated with vitamin A and D. not good. we did NN before, and she certainly didn't react in the way she does to other ingested soy (a face rash, etc.). hopefully NN is right. that'd be awesome .

Actually, the kids version of NN is derived from cod liver. The adult version (all the same levels of beneficials--different dosing) is based on sardines & anchovies--not cod liver.

[nayma]

yeah, we've always done the adult version of the NN - due to the higher dosages of epa, etc. thanks for the head up, though .

[BookGoddess]

Originally Posted by APToddlerMama

Can I ask what tests you ran and how you got insurance to pay for them? Who ordered them? I'd really like to do it. Can you do it even after removing gluten? Thanks

The other key to getting your insurance to cover it is to use the right insurance codes to cover the procedure. Don't say it's for ASD. That won't get you any coverage. Rather, look for the appropriate codes for the test like GI issues, immune abnormalities, etc. because that's what you're looking at. You can find the codes online or your doctor's office might be able to help you, but be sure you don't use the 299.0 code which is for ASD.

[heatherdeg]

Originally Posted by BookGoddess

The other key to getting your insurance to cover it is to use the right insurance codes to cover the procedure. Don't say it's for ASD. That won't get you any coverage. Rather, look for the appropriate codes for the test like GI issues, immune abnormalities, etc. because that's what you're looking at. You can find the codes online or your doctor's office might be able to help you, but be sure you don't use the 299.0 code which is for ASD.

And in fact, our evaluators knew how to play this game. My son's dx for the first 2 years was "megaencephalopathy" (or something like that... "big head" essentially) and they covered everything (apparently large head can indicate brain problems). When we changed facilities, we had to go through all kinds of nonsense to get the codes right.

[APToddlerMama]

Okay, great on the lab tests. Only question is how on earth do you get first urine of the morning from a toddler??

[chicmom]

I am a NICU RN and this is what we do for urine samples in babies...It would also work for a toddler in diapers.

Put a whole bunch of cotton balls in the area on his diaper where he pees the most.

In the AM take all the satuated cotton balls and squeeze out the urine into a cup. In the NICU we stick the cotton balls in a 20 cc syringe, stick the plunger in and squeeze the cotton balls that way. I guess you could just used gloved hand to squeeze it out that way. Kinda gross, but it works like a charm!

How much urine do you need?