Thursday, January 3, 2008

Update at 8 Weeks

(I wrote this back when we were 8 weeks into the GFCF diet.)

My son just turned 3 last week. He was diagnosed in August with SPD. Primary issues include tactile-seeking (always wants something in his hands, touching seams on clothes, enjoys new textures etc), tactile defensive in other ways (impossible haircuts, dentist visits, fingernail clipping, getting clothes wet or dirty causes
fits), difficulty sleeping (tossing and turning and putting loads of toys in bed for at least 2 hours a night), difficulty with transitions and changes (screaming, arching back, etc), quickly frustrated (screaming when breakfast not ready fast enough), eating issues (very picky eater, self-limited to dairy and carbs, shoving
food in mouth for sensation, preference for salty, spicy, bubbly, hot, cold, etc -- anything extreme sensorily-speaking), frequently gagging on food and throwing up, refusal to try new foods, and the usual crashing into furniture, etc, as well as low tone, clumsiness, and difficulty potty training.

I started the GFCF diet not at the direction of a pediatrician or other professional but just because I wanted to see what would happen since I know it has been helpful for families dealing with autism (and I consider SPD to be on the autism spectrum, even though my son hasn't been diagnosed with autism).

I started with a gusto and dropped $200 some dollars on the GFCF "kit" that you can buy at, along with the "manual" and DVDs and the whole thing.

I started by getting Tapioca loaf bread made by Ener-G, which is only good toasted I think, and gave him his peanut butter and jelly sandwiches on that. Instead of regular milk (of which he was drinking EXCESSIVE amounts every day), I switched him to rice milk and then tried almond milk. But before I made the switch, I spent
about a week of giving him OTHER beverages besides milk or milk-substitutes. I gave him root beer, lemonade, water, juice, tea...anything i could think of. There was NO milk in the house for a week, and that was really hard for me, too, because I love milk myself! I think during that week, he kind of "forgot" about the taste of cow milk, so that helped when I introduced the rice milk instead. It took some getting used to, but he accepted it, so that was a MAJOR battle won.

When my GFCF kit came in, I tried all the various things on him. Some he loved (GFCF oreos) and some he hated (GFCF bars). I never read the "manual," and we still haven't watched the DVDs.

I started switching over to Whole Foods to do my shopping instead of Safeway (although I went to Safeway a few times and they had lots of GFCF stuff). I started reading labels on everything and was surprised that so many things had wheat or milk ingredients. Shopping took me MUCH longer than it used to (but I went alone and
used this as my "me" time), and my grocery bill started going from $150/week for a family of 4 to $200 then $250, and once it went to $300! In the beginning, I was trying to find any products that were GFCF and would buy them. If my son didn't like them, I gave them to my daughter (she'll eat anything). I also wasted a lot of food that went uneaten.

I started a food diary to keep track of EVERYTHING he was eating and what reactions I noticed. About 3 days after removing the cow's milk and casein, I had the first real "talk" I had ever had with my son. We were laying in his bed at night, and he started telling me things about his day and about his feelings. It was like he was a different kid. Of course, my son was verbal before the diet and was not lagging in language according to any pediatrician's schedule, but I always felt his language was not up to par with other kids', and I especially felt that his language was more "reporting" than "communicating" (e.g., "look mom, a bird" instead of "look,
mom, the bird is flying" or "look, mom, a bird! what is the bird doing?" or "mommy, i love to watch birds flying up in the sky!") As we have progressed with the diet, his language has absolutely soared, and I am every day laughing at something new he is saying or new ways he is expressing himself in ways he didn't just 8 weeks
ago. Of course, much of this may be due to his progressing in age, but I am intrigued enough that I am continuing with the diet.)

The first week or two were VERY difficult. My son really did not eat for about the first 3 days except for nibbling on a few things. It was REALLY tough and I felt like a really bad mom for not feeding him. Every night was a battle, and he would scream and scream for ice cream or cookies, but I held out and after a while he realized that I meant business -- and he started to eat.

I read the posts on the GFCF board OBSESSIVELY and got almost no work done at work. I used comp time because my billable hours were so low. It was awful, but I was absolutely obsessed with learning more and more about it, and there were SO many knowledgeable people on the board and WAY more issues being talked about than just GFCF -- it was truly eye opening. A lot of people mentioned that soy acts
similarly to casein, so many people had their kids on a soy-free diet too. At the same time, I was noticing that my son's skin was getting red, dry patches all over it. I posted a question about it, and many people responded that their kids reacted the same way when they had soy. What I realized then is that there is SOY in so many
things -- especially when you are trying to go GFCF. There is soy in GFCF snacks and breads and even milk substitutes like rice milk. There is soy in oils and supplements! I thought I would go crazy trying to feed my son not just things that were GFCF but now soy-free too??? But I decided to give it a try for a week and see if my son's skin got better. One night I stayed up really late and went through the entire house and labeled anything that had soy in it (basically so that my husband wouldn't inadvertently feed him something with soy). I realized that many of the wonderful things in the GFCF kit contained soy too!!! Our GFCF waffles had soy! Our
pasta sauce had soy! His GFCF pretzels for snack time had soy! Argh, that was tough. But a week later, you know what? His skin was back to normal. So we are now soy-free too (and it's gotten much easier now that I know what to look for in labels, etc).

I also read a lot about yeast overgrowth on the GFCF board and how many kids with autism have high amounts of yeast in their guts that is causing problems. I started giving my son 1 drop of Grapefruit Seed Extract in his lemonade every day. About a week later, his skin got really itchy, then his pee started smelling really bad, and then he had really soft, mushy poops with cottage cheese-looking stuff in it, and then he had 3 days of diarrhea with black thread-like things and black specks. I stayed home from work on those days. This was yeast die-off -- all the yeast coming out of his system. Once this was all done, his language and focus continued to improve, he stopped putting his hands in his mouth, he stopped putting his hands
down his pants all day, he stopped playing with his penis non-stop...seriously! Those were all signs of yeast overgrowth (so I learned on the GFCF board), and once we went through the yeast die-off phase, all those things stopped. It was pretty interesting! (and I now give him "biotin" every day to keep his yeast under

I also started giving him melatonin at night. He would fall asleep within 30 minutes and HE would tell ME that he was tired and wanted to go to sleep! He didn't even want to read books anymore! He just said, "Mommy, it's time to sleep." And he would turn off his light and get into bed. Seriously -- this was UNHEARD of before this!
Everybody started sleeping in their own beds after that (before, my son would wander into my daughter's room and fall asleep there, then they'd both wake up later and come to our bed).

I am in the kitchen a LOT more now and am getting more and more confident every day -- I am trying new recipes all the time and am even making up some of my own! I found a great GFCF muffin recipe that my son loves, and I am starting to try new vegetables in it to sneak more veggies into his diet.

He ate a pear for the first time a couple of weeks ago (HE asked ME for it!) and is even eating lunch meat roll-ups now (something he NEVER ate before because it was too slimy).

I am SLOWLY starting to spend less and less at Whole Foods. I am only buying a few prepared GFCF things (Ians makes good chicken nuggets and fish sticks that my son likes, and Enjoy Life makes good GFCF cookies). Before, I was buying everything prepared, and it was SO expensive. I have made my own chicken nuggets twice and it is
MUCH cheaper (and totally easy)!! I have made GFCF cookies, donuts, pancakes, muffins, and of course meals too like chili, soups, chicken in crock pot, beef with veggies, etc. We eat Tinkyada GFCF spaghetti or other pasta once a week with GFCFSF pasta sauce (Prego brand) -- many pasta sauces have soy or cheese.

I have 5 different GF flours in my kitchen now (many GF recipes call for a blend of flours), but there's a Bob's Red Mill All-Purpose Flour that is GF and has worked best for me (less hassle).

Removing the gluten and casein (and soy) has revealed new food intolerances that I never even knew existed before because the gluten and casein intolerances were covering them up. For example, bananas make my son very hyper, as do mandarin oranges, and red grapes will make his cheeks turn red right away and then he'll
become really hyper. I no longer give him red grapes or use red wine vinegar, and I stay away from juice that has red grapes in it. I just figured out the mandarin orange thing last night, so I will save those for breakfasts (instead of dinner time like last night) so that he can have all that energy for school instead of at 4:00 in
the morning!!! Same thing for bananas!

I am trying new ideas for snacks and lunches every week and am learning what he likes and doesn't like. His lunch today was GFCF hot dogs (brand: Applegate Farms) in a thermos, along with a winter squash muffin (used baby food to get the winter squash in there for some veggie action), and some green grapes.

Tonight for dinner we are having another new concotion of mine: chicken in the crock pot with a sauce of carrot ginger soup (bought at store; it's GFCFSF but he didn't like it so I am disguising it in this sauce) mixed with coconut milk (coconut milk is casein-free and is actually a yeast-killer, it also is high calorie so it helps bulk up my skinny, low-tone SPD kid)! I will serve it with rice.

This morning for breakfast he had GF toast with almond butter (more calcium than peanut, although we do lots of peanut butter too) and pumpkin butter instead of jelly (although we do jelly). Pear juice to drink, and a few *green* grapes. Tomorrow's breakfast is GF pancakes (there's a GF mix I buy by Arrowhead Mills), and the next day is GF cereal (there are lots of choices, many of them kid-targeted) with vanilla hemp milk (very high in calcium and other nutrients along with omega 3 and 6). [my son LOVES the hemp milk]

His previous SPD issues are dramatically reduced, just after these 2 months. I think that much of this is diet-related because we have not been to OT in those 2 months, and I have been so busy learning about the diet that I have not been focusing on "sensory diet" at home. He is GREAT with transitions now -- absolutely perfect. He
still likes to carry things around with him, but if I tell him to put something down (like if we're going to school where they don't allow toys to be brought in), he just says "Okay mommy" and puts it down. He NEVER shoves his mouth full of food anymore and has not gagged in about a month and a half. He is trying new foods. He is
falling asleep easily (even on nights when I don't give melatonin his eyes are getting droopy right at 8:00), he is letting me clip his fingernails with minimal fuss, and we even cut his hair a couple of weeks ago with not one complaint! These things were absolutely UNHEARD of before. He still doesn't like getting his clothes wet, but if he spills something on his shirt at dinner now, he will calmly say, "Mommy, I want to take my shirt off" whereas before he would IMMEDIATELY start shrieking and pulling at his shirt, and we couldn't get it off him fast enough. He is completely potty trained with about 1 accident per week at school (before diet it was 2 or 3 accidents per day).

Of course, I don't want to suggest that this diet is a "cure" for SPD by any means. My child is still obviously SPD and still has issues. But things have improved SO much since we started this diet 8 weeks ago that I just think it's worth a try -- you can ALWAYS go back to the old ways if you're not happy with it. Granted, it IS
really tough in the beginning when the kid is going through withdrawal from the gluten and casein (imagine an adult going through heroin withdrawal and you'll know what I mean), plus you don't know what you're doing and everything seems so overwhelming. But if you stick with it and get over that first few weeks and start
seeing changes, it really can be remarkable!

If I were to start over again knowing what I know now, I would just focus more on getting back to "whole" foods -- meats, veggies, and fruits. I would suggest NOT trying to substitute everything (except maybe spaghetti because it's so easy with Tinkyada brand) but instead to gradually introduce different things that are GFCF and slowly phasing out the old stuff. If you have ever learned a foreign language, you know that it's impossible to translate many words 1:1 because many words
or sayings just don't have an exact counterpart in the other language. It's kind of the same thing with this diet. Wheat spaghetti to rice spaghetti is a pretty simple translation, but cow's milk cheese to rice cheese doesn't really "translate." So
maybe start with the things that are equivalent in both "languages" - - chicken is still chicken in the GFCF world (although we prefer organic), and green beans are still green beans. That's a good place to start.

The website at suggests going GFCF over a 10-week period, which many people do. I just did it all at once because my son was starting a new pre-school and I wanted him to start the school being GFCF as opposed to having him eating the same snacks as all the other kids for a month and then all of a sudden having to
bring in his own snack. He has brought in his own GFCF snack since Day 1, so I think he just thinks that's the way it is! :)


fefe6919 said...

I think your progress is great, however, I bought the grapefruit seed extract and it tastes horrible. I mixed it in propel. Do you think its because I didnt buy the exact brand you did? Could you please let me know. BTW, my son used to love milk until I got the silicone nipple sippy away, now he devoures bread.??

Tori said...

Hey fefe6919! Thanks for your comment! Yes, the grapefruit seed extract tastes horrible!!! (It's strong so you have to mix it something.) I've found that, even at high amounts (15 drops), you can't taste it in orange juice. It also works well in Italian lemon soda. Both of these have high sugar, though, so only use as much as you need to get the stuff down! The brand I use is NutriBiotic (I think I have a link to it in my Amazon store over on the right side of the screen.) Hope that helps! -- Tori :)

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DISCLAIMER. I am not a doctor. I am not a nutritionist. I'm just a mom who has been implementing the GFCF diet since October 2007 (and soy-free about 5 weeks thereafter). Please do not rely upon my blog as your sole source of information or advice. I only offer my personal experiences for your consideration and can not be held responsible for any adverse reaction or experience you or your child may have should you choose to try something I have tried. Remember that every child is unique, and what works for mine may not work for yours.