Q&A: Abrupt weaning, and autism (no causality!)

Hmmm. I've republished the entire website, and the comments still aren't accessible. Continuing the dialogue with Typepad's tech support people...

Katy writes:

"As there's been some talk of weaning recently, I thought I'd email and ask a question about weaning abruptly.  We recently found out that our 18 month-old son has autism.  After scrambling to get him services (speech therapy etc.), the next thing on our list is to try eliminating gluten (wheat) and casein (dairy) from his diet which has had great results in many kids on the spectrum (as a side question, I'd love to hear from people who've had positive or negative results with this kind of dietary change). 

Anyway, we decided that Christmas break would be the best time to try it as he won't be in his full-time daycare/therapy program where they give him his lunch and snacks and we'll be able to fully monitor everything he eats.  However, I'm still nursing him and my options are either to wean him or cut out gluten and casein myself, something that rather daunts me as I'm a big dairy person and the holidays seem like an extra hard time to be on a special diet. So I'm thinking of weaning him; this also seems appealing as he's become a nursing maniac in the last month, constantly lifting up my shirt and wanting to nurse, as well as waking lots in the night demanding to nurse.  I'm feeling very frustrated with him as I feel like he's constantly pawing at my body and the night nursing involves lots of sucking, snoozing and groping of my other breast - to the point that my body feels so sensitive I could scream (and, of course, I'm not getting good sleep).  So my questions then are:

  1.  Is this just an awful time to wean if he's so interested?  What's going on with this 18 month nursing mania?

2.  If I weaned him, how would I deal with the constant demands for nursing?  He has limited language so I don't know how well just telling him that he can't nurse anymore would work.  I hate the idea of just saying no to him.

3.  How would I get my milk to dry up? (Moxie, you mentioned something about mint tea in the previous message about weaning - do you have other recommendations?)"

I'm sorry you got this diagnosis, but I'm glad you have a diagnosis. I'm hoping that other parents of kids with autism will jump in with help.

Answers in the order in which the questions were asked:

1. It depends on your definition of "awful." 18 months is just a tough time all-around, and if you're still nursing, it tends to be one of those times the mother just can't deal with it anymore. So, yes, it's going to be really difficult to wean at this age because he's so needy and wants it so much. But it might be worth it for you not to have him nursing anymore. So "awful" here is totally subjective, and you get to pick your own poison.

Personally, having nursed two kids through the 18-month I-can't-stand-this-for-one-more-second, it-makes-me-feel-like-a-worn-out-old-sow, stop-stop-for-the-love-of-all-that's-holy-stop phase, I think it's easier just to self-medicate through the nursing with chocolate and do the weaning in two or three months (why is 21 months so much easier than 18?). But if you have to do it now, you have to do it now.

2. You got me. That's another reason I waited the 18-month phase out. Someone out there has done this, though, and will have something for you.

3. Bear in mind that drying up your milk is NOT going to prevent your hormones dropping when you wean, so be really aware of that and do some extra T-Tapp Hoe-Downs every day, make sure to keep up your Omega 3s and B-complex vitamins, and get as much sleep as you can. PPD on top of all of this would not be good, so do whatever you can to prevent it during the weaning process.

The things I know that help dry up milk are mint and sage, so you can brew mint tea and alternate that with "tea" you make by boiling fresh sage leaves. These aren't going to hurt the kid if you're still nursing while drying up your milk.

If you want your milk to dry up more quickly, you can take the old-fashioned Sudafed (the kind that can make you drowsy) for a few days, which will dry up every liquid in your body, so you'll need extra handcream while you're taking it. But if you're still nursing while you're taking it, it can make your child either super-drowsy or hyper, so use with caution.

All-in-all, I think weaning over Christmas is going to really suck. But going off dairy and wheat yourself is going to really suck, too (eggnog! Christmas cookies!).  If it were me, I'd probably delay the entire project until January, but  you just have to decide which is going to cause the least problems for you.

Now, I'd really like to hear from parents of kids with autism, specifically about navigating the condition, and especially about dietary changes that can help. Thank you guys so much.

Comments

[Heather]

My newphew is now 13, diagnosised with PDD at 5 1/2 years. Ultimately, it was testing out for incriments of things that worked and ending with a hodgepodge of a little of this and a little of that which got him to his highest functioning. I do remember that his diet was part of what helped that. As they found more tools to help him they were not SO strict about diet, but knew there were consequences to the food choices.

Good luck with everything.

[Courtney]

Wow, it sounds like yu've got a lot on your plate. I had to eliminate dairy, wheat (and loads of other things) for my son while nursing, so I know it isn't easy. Still, my advice would be to wean slowly. I know that eliminating these things helps those on the spectrum tremendously, but I think it would be more traumatic to be weaned abruptly than it would be to continue to expose him to these things. The best case scenario would be to eliminate these foods entirely from your diet (and that's what I'd do, it's surprisingly easy once you get the hang of it), but I think continuing to eat the foods while you gently wean him is better than weaning abruptly.

[bonberri]

I did the GFCF thing for a while (6 months? 8? I don't remember) due to dd's eczema. The first two weeks are hell, but it gets better. If you choose to go that route, you can totally do it.

During our 18mo nursing frenzy, I taught my daughter to give me a big hug before we started to nurse. So easy to do, yet it made such a big difference for me, mentally.

[cat19]

My niece is on the spectrum and is GFCF; my younger son is multi-allergic, and to continue nursing I've had to cut the top allergens (dairy egg soy wheat nuts and seafood) then some random extras.

Our lifeline in all this has been the forums at KidsWithFoodAllergies.org. I can't imagine a better site for helping a family navigate diet changes. Before you decide to wean or not wean, to try the diet or not, I'd highly recommend joining that website (or a similar one) to get a fuller idea of what the diet changes involve and to get yourself a support system for the many many many changes that come with such a diet change, whether just for your child or for you both.

In giving up dairy, your first big question is whether you're willing to do much soy. Back before we had to give up soy and wheat, we used some fabulous soy subs for dairy; almost everything Silk makes or Tofutti makes worked for us. (Some may include wheat/gluten, so you'd need to check on that.)

We relied (and still do rely) really heavily on the recipe databases at that website.

On a previous poster's comment that weaning fast may not the right choice even if you don't change your diet: having seen the changes in my niece when her diet changed (and her mom did decide to wean to make that change; not that you have to), having now seen her get "spacy" when she gets an accidental gluten exposure, if it were my child, I would remove gluten and dairy fast, and if I couldn't bring myself to change my own diet, I'd reluctantly choose weaning. (By fast, I don't mean overnight; I'd take a few days to plan and get good subs to him and/or me. Hunger from cutting foods without any alternatives lined up is a recipe for panic and giving up too soon.)

I would, however, be concerned that weaning fast could be enormously hard on you hormonally at a time when you're already under a great deal of stress with a new diagnosis. So if you do decide to wean (or to change your diet), try to do what you can to take care of yourself.

[giddy]

First, just a comment--Moxie, do you really mean Sudafed (a decongestant) and not Benadryl (an antihistamine)? I don't know their effects on breastmilk, but I do know that for me, decongestants keep me up, and antihistamines make me drowsy. The reverse is true for some people, though. Anyway, just wanted to be sure.

I don't have good recommendations for your poster, other than to point her to http://shroomhead.blogspot.com This mom (my college roommate) tried the GFCF diet for her son when they first got his autism diagnosis several years ago, and she started the blog to record their progress. You would have to go back to the fall of 2003, I believe, to read about that experience. You can also contact her directly from the blog if you find you have specific questions. If she thinks it's too far back for her to remember, she may at least be able to point you to some good resources!! Best of luck to you!

[Melissa]

When I get to that point where I think I'm going to absolutely lose my $h!t and have a major freak out from so many hours of nursing and having my other nipple twiddled (makes my skin crawl sometimes), then I just try to take a deep breath and repeat a little mantra "she won't nurse forever, someday this will stop". And I try to cuddle her a little more because soon enough she won't want to.

If you do decide to keep breast feeding, or to wean a little more slowly, then please do remind yourself that your little one will not breastfeed forever and that you have many years to come to enjoy wheat and dairy!

[wavybrains]

You have my sympathies--I'm celiac and my husband's allergic to dairy. But, it's not as hard as you think to eliminate gluten and dairy, and in the long run, it's going to be far easier to prepare one set of meals and snacks. Plus, if your son sees you eating roughly the same food as him, it'll be easier on him and cut back on any cheating/accidental intake. Do your dietary re-vamp in stages: First go gluten-free, then eliminate all dairy but goat's milk/cheese, then eliminate that. It'll be easier to make the changes stick and become a way of life if you take a month or so and do it gradually.

Do you have a Whole Foods/Wild Oats/Big Natural food store close by? Even if you have to drive an hour or so, it'll be worth it to go and do a huge stock-up---make it a christmas present to yourself. There are several brands of food that are both gluten free and dairy free. You can substitute almond milk for milk in most recipes, and gluten-free baking mix for flour. Gluten free cereal and snacks will make your life easier.

Go to the library and look for books by The Gluten Free Gourmet and by Gluten Free Girl, and look for Vegan cookbooks (great for dairy free recipes).

It'll be easier to start your new WOL on the 26th, but if you want to jump in sooner, think of things that you already like that you can eat/serve easily: cranberry sauce, pumpkin pie with a crust from gluten-free pantry's mix and almond milk subsituted in the filling, rice or cornbread stuffing, dark chocolate, nuts, popcorn, apple cobbler (use a gluten free pantry mix here too and gluten free oats), veggie tray with hummus, etc.

It can be done! Once you get through the first two months, you'll be an expert.

I'm no expert, but I'd want to make the dietary changes OR wean, but not both at once---it's going to be hard enough adjusting to a new WOL, and having familiar comforts will help greatly. Make little changes in both areas until you're where you want to be on both fronts.

[Caroline]

Just jumping on the bandwagon here. My daughter is a dairy-free kid, she has a friend who is dairy and wheat free (allergies), and while it seems daunting at first, it's really not so hard to do. A few trips to a good healthy grocery store and you'll have it down.

It seems easier to me to postpone weaning and go with the diet change. I also have a friend who had to eliminate dairy, wheat and soy while breastfeeding, and the knowledge that it was temporary sure helped.

And Silk makes eggnog.

[hedra]

Yay for Silk Eggnog. Seriously yummy.

I'm dairy-free, have been for six years. The first two weeks SUCK. Craving for cheese, butter, milk - wanting to just chug it by the gallon... wahhhh! Gluten-free is much more possible now, as well - there are many options, and you can even eat out at certain places (Chinese is hard, due to the soy sauce having gluten, and straight Italian is hard, but there's always steak).

I'll ditto the kids with food allergies site (also found as POFAK.org, or Parents of Food Allergic Kids). MY LIFE SAVER, the forums there. Worth a thousand times the $25 annual fee for full access. LOADS of breastfeeding on special diets moms there, plenty gluten free and dairy free, they'll make it seem possible, sane, and rational - and you'll start also seeing the level of benefit you're looking at for possibles. Seeing (or reading) the difference between before and after... it helps motivate the change.

And keep in mind, that even if your son nurses longer than typical, you're cutting out these things only temporarily. Unless, like me, you discover that the reason you loved loved LOVED dairy so much was because you were allergic to it yourself... my kids are all pretty much weaned (occasionally still ask, but forget in a few seconds), and I'm still dairy-free. My joints don't ache, I feel a decade younger, etc. I had one of those 'weird' reaction profiles (not 'IgE' allergy, but the allergist said it is still a toxic reaction, so don't eat it!). Bonus, I lost weight so fast once it was out of my system that I was asked by my midwives to eat more fat. Heh. Yeah, eat more fat, and still lose 2 lbs a week, and fit into skinny clothes and cute shoes for the first time in ages (my feet are now smaller than they were in high school! Joints un-swelled, arch lifted. Woo!)

I'll give you my family doc's advice, as he gave to me: If my child was at all at risk for any reason (physical, emotional, developmental, etc.), he wanted them to get breastmilk as long as possible. Which means it is best if I can change my diet to help keep the child on breastmilk as long as possible. That said, he also noted that he understands how intensely challenging it can be to just decide to stop one or two of the main food groups in the US diet. I found the argument that a child 'at risk' should get breastmilk as long as possible very validating, and kind of a spin on how it is often presented. Granted, there are some kids for whom being on breastmilk puts them MORE at risk, so ... the line is where do you fall for yourself - is it worth the short-term TOTAL suckage, followed by longer-mid-term moderate suckage for your diet, vs. weaning (which also could have some moderately sucky aspects)? Again, head to POFAK.org and talk it out there - they have all been through the same issues, and there are women there who had to wean due to the child not tolerating ANYTHING even when the mom was on severe exclusions, and others who weaned to formula because they could not function with the exclusions themselves, both sides! You'll get a variety of pictures there, and it will also seem much less scary to try the exclusion after you follow a few people through their experiences (thread histories).

Some other thoughts from a person whose child has been on the margin: I think that breastmilk may be useful to your son for more than the typical reasons - immune support for kids with autism is useful, IgA support for the GI tract may help with reactions/behaviors (that comes through breastmilk), and there may be a behavioral support function through having a 'step-down' activity (both the act of nursing and the biochemical response to breastmilk may help with behavior management). Plus, the process of nursing is relational, which may be of use in the therapeutic process as well. THose are my WAGs, though - Before making the final call on the weaning, talk in depth to someone in the therapeutic world about the impact and implications of the extended nursing - preferably with someone comfortable with it as a general concept, please! Someone out there must have ideas about whether the repeated relationship/interaction process of nursing is supportive of the processes they'll be trying to develop and support.

(BTW, two of my immediate family members have/had Asperger's.)

No guilt from me if you can't make the leap. It looks huge from here, and that first period does really suck, I won't lie. However, it *is* survivable, and then really doable, and even comfortable. I think you CAN do it, even at Christmas (I did it at the same time, or rather, just before Thanksgiving. Whee.).

Also, check into the IRS.gov site - the cost difference of gluten free foods (and dairy-free) may be counted a medical expense. You'd have to check, but it is for celiac disease.

[Maria]

Nothing on gluten and dairy, but one little thing about the sage: I wonder if there's a reason to alternate sage and mint tea? I dabbled with sage for a week when Mio first started to sleep longer stretches and my prone-to-blocked-ducts breasts felt like they would explode. I thought the sage tea tasted awful so I always did sage and mint together. At least it tasted better.

Yay for Silk Eggnog. Seriously yummy.

I'm dairy-free, have been for six years. The first two weeks SUCK. Craving for cheese, butter, milk - wanting to just chug it by the gallon... wahhhh! Gluten-free is much more possible now, as well (my FIL is gluten free) - there are many options, and you can even eat out at certain places (Chinese is hard, due to the soy sauce having gluten, and straight Italian is hard, but there's always steak).

I'll ditto the kids with food allergies site (also found as POFAK.org, or Parents of Food Allergic Kids). MY.LIFE.SAVER, the forums there. Worth a thousand times the $25 annual fee for full access, helped me track down what was up with B, even though it ended up not being an allergy (still a food intolerance, but not typical). LOADS of breastfeeding on special diets moms there, plenty gluten free and dairy free, they'll make it seem possible, sane, and rational - and you'll start also seeing the level of benefit you're looking at for possibles. Seeing (or reading) the difference between before and after... it helps motivate the change.

And keep in mind, that even if your son nurses longer than typical, you're cutting out these things only temporarily. Unless, like me, you discover that the reason you loved loved LOVED dairy so much was because you were allergic to it yourself... my kids are all pretty much weaned (occasionally still ask, but forget in a few seconds), and I'm still dairy-free, just now for myself. My joints don't ache, I feel a decade younger, etc. I had one of those 'weird' reaction profiles (not 'IgE' allergy, but the allergist said it is still a toxic reaction, so don't eat it!). Bonus, I lost weight so fast once it was out of my system that I was asked by my midwives to eat more fat. Heh. Yeah, eat more fat, and still lose 2 lbs a week, and fit into skinny clothes and cute shoes for the first time in ages (my feet are now smaller than they were in high school! Joints un-swelled, arch lifted. Woo!)

I'll give you my family doc's advice, as he gave to me: If my child was at all at risk for any reason (physical, emotional, developmental, etc.), he wanted them to get breastmilk as long as possible. Which means it is best if I can change my diet to help keep the child on breastmilk as long as possible. That said, he also noted that he understands how intensely challenging it can be to just decide to stop one or two of the main food groups in the US diet. I found the argument that a child 'at risk' should get breastmilk as long as possible very validating, and kind of a spin on how it is often presented. Granted, there are some kids for whom being on breastmilk puts them MORE at risk (like some of the protien intolerances), so ... the line is where do you fall for yourself - is it worth the short-term TOTAL suckage (you're not wrong that it is both logistically and personally challenging!), followed by longer-mid-term moderate suckage for your diet, vs. weaning (which also could have some moderately sucky aspects)? Again, head to POFAK.org and talk it out there - they have been through the same issues, and there are women there who had to wean due to the child not tolerating ANYTHING even when the mom was on severe exclusions, and others who weaned to formula because they could not function with even smaller numbers of exclusions themselves, both sides, and both welcome and supported! You'll get a variety of pictures there, and it may also seem much less scary to try the exclusion after you follow a few people through their experiences (thread histories).

Some other thoughts from a person whose child has been on the margin, if in a differnet way: I think that breastmilk may be useful to your son for more than the typical reasons (such as immune support for kids with autism is useful, IgA support for the GI tract may help with reactions/behaviors (that comes through breastmilk), and there may be a behavioral support function through having a 'step-down' activity (both the act of nursing and the biochemical response to breastmilk may help with behavior management)...)... but there might be a benefit to the process of nursing because it is relational, which may be of use in the therapeutic process as well. THose are my WAGs, though - Before making the final call on the weaning, talk in depth to someone in the therapeutic world about the impact and implications of the extended nursing - preferably with someone comfortable with it as a general concept, please! Someone out there must have ideas about whether the repeated relationship/interaction process of nursing is supportive of the processes they'll be trying to develop and support.

(BTW, two of my immediate family members have Asperger's, including my (now deceased) grandfather, who wasn't dx'd until he was well into his 90's. It sure explained a lot.)

No guilt from me if you can't make the leap. It looks huge from here, and that first period does really suck, I won't lie. However, it *is* survivable, and then really doable, and even comfortable. I think you CAN do it, even at Christmas (I did it at the same time, or rather, just before Thanksgiving. Whee.).

Also, check into the IRS.gov site - the cost difference of gluten free foods (and dairy-free) may be counted a medical expense. You'd have to check, but it is allowed for celiac disease.

Finally, CONGRATULATIONS on getting a dx at this point. It makes SO much difference to start early. I hope therapeutic work progresses well. I keep a lot of eyeballs on the autism spectrum things, due to the family issues, and I'm always glad to see a dx come in under 2 years. Not having any issues in the first place would be ideal, but if they're there, early dx is so important. :)

[hedra]

My long comments are all being flagged as spam. Heh. Okay... hint taken! LOL!

Short form: POFAK.org (same as the allergic kids site above) - GO THERE IMMEDIATELY. Get on the forums, ask these questions there. They've all been there, done that, there's a forum JUST for breastfeeding allergic (or dietarily sensitive) kids.

The first two weeks is hard. But the value is huge. IMHO, unless you've proven that breastfeeding AT ALL is detrimental to his progress, then change the diet first. Keep all the things that may help, and eliminate only things that may harm. In which case, diet suckage for you. But it is temporary.

I cut out dairy the week before Thanksgiving six years ago. Yeah, t-day and xmas were challenging. But my child became LESS challenging during that span, and that made it all worth it. Bonus, I found out I was addicted to dairy because I was reacting to it myself, and ... well, I'm down 70 lbs from then, and it melted off without any additional effort. There may be side bonuses to going DF/GF...

More later, if I get a chance.

[brigita]

Thanks for the abrupt weaning advice...my daughter turns 5 mos. tomorrow and I start my first round of chemo the day after Christmas, so BF is going bye-bye. I'm sure it would have been easier on the both of us if I started weaning the second I got the diagnosis two weeks ago, but I wanted to nurse right up until the last second since she will be my first and last bio-baby. I'm hoping that they can give me a shot at the hospital to dry me up good, but I'll definitely try the mint & sage as well. Any other tips would be welcome! :)

[Katy]

Thank you everyone for your extremely helpful comments (and I'm excited to check out all the resources you recommended). I feel much more cheered about the prospect of going GF/CF and your comments helped me realize that weaning is not something I really want to do (despite the 18 month nursing mania) but felt kind of pressured into by the diet. I think we'll defer until just post-Christmas and then give it a shot.
Thanks again - this site is a life-saver!

[First time poster here]

When I had to deal with the issue of celiac disesase - runs in my husband's family - I asked my pediatrician and the GIs about the research I'd encountered that said that casein (the offending component of gluten) can be transmitted via breastmilk. They all told me that (a) the papers that suggested this was possible had been rejected by all reputable medical journals; (b) attempts by research labs to replicate their results had all failed; and (c) that the existing papers that suggest the link exists were in the process of being officially retracted by the journals that had published them. All of this was last April and I haven't followed up to see if (c) has actually occured.

Bottom line: don't change your diet. Change your child's.

[sonyala]

Wow. Brigita and Katy--What hard things to face right now. No advice about nursing and weaning for illness, but I offer you long-distance support while you struggle with these unfortunate illnesses.

[Courtney]

OK, so I beg to differ in a major way with "first time poster" --as a Mom who a)saw my son go from major refluxer plus a million other symptoms to just fine with dietary restrictions and b) casein is not in gluten, it is in dairy-- it is not true that food proteins do not pass through breastmilk.

[m]

I don't have any experience with either of Katy's questions, but I do know of a fantastic website full of yummy gluten-free recipes: http://glutenfreegoddess.blogspot.com/ She will also often give dairy-free options, too, so it might be a good place to start your planning menus.

Best of luck!

[liz]

Hugs to Brigita and Katy.

[veggiewarrior]

I have no advice on autism but I have a few hints on dairy/gluten free cooking. First, it will be way easier if the whole family adopts the diet. Cooking multiple meals is awful. Knowing that all the food in your home is safe for your son to eat will be less stressful for everyone, especially in the beginning. Second, in my opinion the "fake" stuff (like soy cheese and gluten free bread, etc.) just tastes terrible and makes you long for the real thing. After not having the real stuff for a long period of time it will probably seem fine, though. But right of the bat, ewwww.

The best recipes for this diet are just naturally dairy & gluten free (think yummy ethnic foods that aren't slathered in cheese or served on top of bread). They don't taste like they're missing something because they aren't! The best cookbook in my opinion is: "Great Vegetarian Cooking Under Pressure" by Lorna Sass. All the recipes are dairy free. The only thing to double check to make them gluten free is that you are using proper gluten free condiments (such as soy sauce). The recipes use wholesome, non processed ingredients like fresh produce, dried beans, rice and other grains. The dishes are no fail and are quickly and easily prepared. They are all vegetarian but don't discount them even if your family is used to eating meat. Incorporating a few meat-free meals into your weekly rotation will be great for everyone's health (read "The China Study" by T. Colin Campbell for more info on the benefits of a vegetarian diet).

I'm a HUGE fan of the pressure cooker, by the way. I can get from scratch risotto on the table in less time that in takes to make a box of Rice-a-Roni. I use it at least several times a week. Don't worry- the pressure cookers you buy now are very safe and have loads of safety features. No more pea soup on the ceiling!

Good luck. Try not to be too hard on yourself if you make mistakes. It's hard to completely change your diet and you can't expect perfection overnight. Best wishes for your son. I'm glad you were able to get a diagnosis while he is still so young.

[Michelle]

I second the hugs for Brigita and Katy.

I don't have any advice about the dietary changes, other than I do have friends with children on the spectrum that have seen amazing results from eliminating wheat and dairy.

On the weaning issue - do it as gradually as you can, both for your health (avoiding mastitis and PPD) and for your son. If you do need to significantly reduce supply quickly try cabbage leaves. I used these after I weaned my son and other than my husband calling me "salad boobs" for a while, it worked very well.

[Laura Camacho]

I had to cut out practically everything (down to the 6 food Total Elimination Diet) for my daughter's multiple severe food intolerances. It SUCKED. But it's doable. Once you get your head around it, you do okay.

I LOVE LOVE LOVE the Namaste brand Blondies baking mix from Whole Foods. Omg. i would still eat those. I also like Tinkyada brand rice pasta (except for the fettucine) - it doesn't get mushy at all.

p.s. Rice Dream rice milk has gluten in it even though they no longer make note of it on the label. FYI.

I think the advice you're getting about prolonging the weaning is a good idea. It does seems like a lot of trauma, and keeping one constant and piece of comfort for him will help both your sanities as you take this next step.

Best of luck.

[Kari]

Just a note on GF/CF: sometimes soy is a huge trigger in kids on the spectrum.

We follow the Feingold Diet (which eliminates petroleum-based preservatives and salycilates.) But we also limit wheat and dairy, but avoid soy the most!

We don't need many "substitute" foods because like "veggiewarrior" writes, there are plenty of delicious meals that simply don't have the gluten and casein (or soy), so they don't taste "off."

There are lots of GF/CF brands out there (particularly at Whole Foods) - tasty stuff, so you end up eating what you always did, but just a different brand.

Best of luck!

[sue]

No advice here, except that it sounds like neither Katy nor her son are really ready to wean, so changing diet is probably going to be easier than coping with the loss of the nursing relationship.

Hugs to Katy and Brigita!

[Cloud]

I've got nothing on autism or abrupt weaning except for the hugs everyone else is offering.

I've had to go dairy free- however, Pumpkin just has a sensitivity (i.e., really bad gas) not an allergy (i.e., scary reaction), so take my advice with a grain of salt. If you can keep soy, Tofutti is a godsend. Also, depending on how strict you want to be on the dairy thing, you may be able to keep butter. Most dairy sensitivities are to the milk proteins, and butter is all fat. Of course, there may be some small amount of protein in there, so if you really want to eliminate all traces, butter probably has to go. But if the autism link is more like a sensitivity than an allergy, you can probably keep butter. And that means you can keep some Christmas cookies... Also, I have found a nice brownie recipe that doesn't use milk or butter- it uses applesauce and shortening. If anyone is interested, I'll post it over on my blog (follow the link on my name).

[Foster]

Speaking as a daycare teacher, having a child on a modified diet is not really that big of a deal for daycare teachers. My center provides breakfast, lunch, and snack to all the kids and kids who are allergic or modified either get a substitute (like juice instead of a fruit) or pack their own food. There is NO WAY I would be interested in modifying my own diet at Christmas let alone try and keep my toddler son away from things like cookie trays. Worth it if I know it is a problem, not worth it just to try it out. Imho, fully enjoy the holiday! Talk to his daycare and let them know that after xmas, he is not to eat anything w/ wheat or dairy and, if necessary, you will be packing all of his food. They can also help you by giving you feedback as to whether or not it's working, which is a huge plus :)

[hedra]

@First time - Journals don't tend to retract published research unless there was misconduct. The most charitable I can be for your doctors is that they did a VERY BAD JOB of explaining that there's new evidence that avoidance of allergens in diet as a PREVENTIVE measure is not supported by current research. See: : Curr Opin Clin Nutr Metab Care. 2006 May;9(3):284-8. Diet of lactating women and allergic reactions in their infants. However, once an allergy or other reaction is known, avoidance is highly valuable. (BTW, even that one clearly states that antigens from diet appear in milk - it's not a steady process, highly variable even in one woman from dose to dose.)
Anyway. Sorry you got bad advice. On the other hand, the evidence does support breastfeeding as long as possible for kids at risk of celiac, regardless of presence of gluten compounds, because one of the main factors for triggering celiac disease is GI infection (specifically rotavirus), and the more breastfeeding, the lower the odds of getting those diseases.

@Katy - glad you feel cheered. I think your decision sounds reasonable - and it isn't like Christmas is that far away, either.

[caramama]

Hugs to Katy and Brigita! You are both going through a tough time, and you will be in my thoughts and prayers.

@Katy: I have a friend whose son is autistic, and the diet change really helped him, so I hope it helps your son. But I'm commented to let you know that the diet change has really helped my friend (the mom) as well. By also cutting the gluten and casein out of her diet (and she wasn't breastfeeding at the time, as her son was maybe 4 at the time), she discovered a lot of her health issues were cleared up. I know one specifically was the athritis she was developing, but this was 4 or 5 years ago so I don't remember anything else. I assume that this is because a lot of these dietary issues run in the family but can manifest in different ways. So if you try eliminating from your diet, you may discover that you feel better too. Good luck!

@giddy: The pseudoephedrine is the active ingredient in the old Sudafed which is known to cause a drop in milk supply.

@Brigita: I've heard that cabbage leaves work really well to help dry up your milk. Good luck with your treatments, and please keep in mind the hormonal changes with the weaning and how that might be affecting you and your mood as you go through the treatments. Good luck!

[Lisa]

this is probably the least of your problems, but it's the only one I've got anything for, so...

re the nipple twiddling: my kid is a major twiddler, and at the 18-month mark it was making me crazy. What finally helped was finally realizing how often I'd say "please be gentle with Mommy" and he'd respond by switching/asking to switch sides.

Now I try to remember to offer the other breast if he's twiddling a lot - of course, this means pretty frequent switching, but it sure beats the alternative. And by now he's occasionally started to twiddle, then realized it and asked to switch. Not always, but enough to give me hope. (Even if your child isn't very verbal, you probably have a way of communicating on this issue.)

[Rachel]

I had the same experience as hedra with eliminating dairy. I think *I* was reacting to it since I was craving it SO much. After six months without it, it no long has a hold on me and I actually sorta don't enjoy it as much. Sounds sad, but not! I have found other loves. Anyway, when I eliminated it during the holidays last year, I found it was totally doable. I personally know two other moms who have to do it for various reasons and they also do it fine during the holidays. It is a mindset. Also greatly helps with weight control during the holidays because you can pig out on the stuff you can have and feel much healthier.

I would not change the diet and wean at the same time, unless, as Hedra said, the nursing is detrimentally affecting his development.

[Katherine]

Not much help on the dietary switch front, but another trigger for autistic kids is red dye #5. Which is in... basically everything. Still, worth a shot.

[wookie]

I have two thoughts... one, I would also delay embarking until January. Is the extra 10 days at this point really going to help/harm anything? I would also be tempted to do the elimination diet in January and then maybe wean in March, just on her rec. that 21 months is easier than 18.

I have done elimination diets while nursing... it's not fun, but it's possible. You can go one of two ways, either eliminating everything except a small handful of foods and then slowly add things back in or cut out one major food group at a time. I would do dairy first, then gluten. There is a blood test, I thought, that you could do that would indicate a *potential* sensitivity to gluten (the only gold standard of gluten intolerance is a biopsy, afaik). However, I'm not sure that this is the same reason that ASD kids are sometimes put on the GFCF diet.

When it comes down to it, everything is a trigger for someone, somewhere, so take the "X is a trigger!" news with a bit of a grain of salt. I would recommend keeping a journal though, of foods consumed and behaviours, we used a cheapie daytimer for a few months. My daughters problems were dairy (we figured that out early) and the real kicker was tomatoes. THAT we probably wouldn't have found without logging.

[Toni]

My husband has celiac - and we've gone mostly gluten free at our house. He's also lactose intolerant - so we try to stay away from dairy as well.

Start slow if you're changing. Get rid of gluten - then the dairy. And label things with gluten labels and gluten free if you're not going completely gluten free in your house. B/c Bear and Muffin are young (2 &4), I've used color coded labels that I made - gluten is black and gluten free is red. Makes it easier for them to know what's going on.

I hope this diet works for you and your son. Good luck.

[Laura]

I don't have any advice or thoughts about the weaning or trying on the diet yourself at Christmas time (though you're handling a lot already so anyway to make any of this easier - I WOULD DO THAT.)

However, just for some personal experience story...

The GFCF diet worked for our 3 year old daughter in regard to giving her a bit of a spurt in her language and behavior. I know that it doesn't work for every child, but it really seemed to help our daughter. She hasn't been diagnosed with an ASD but they are exploring a HFA diagnosis right now. It did seem to help her but it was also a big learning curve for me. Whole Foods has links for gluten free lists of products they carry, as well as for casein free. Keeping to fresh fruits, vegetables and meats was key and finding some good GFCF snacks and cereals at places like Whole Foods was a good thing too. Target carries a few brands lately of mixes (in the cooking isle) and cereals (in the cereal isle).

Here is the link to a GFCF page on a recipe blog I keep if you want some great GFCF links and recipes:

http://recipeapalooza.wordpress.com/gfcf/

The greatest resource to me (aside from the Special Diets for Special Kids books and the book written by Karyn Seroussi called Unraveling the Mystery of Autism and Pervasive Development Disorder) was the FAQ page from the GFCF Diet website:

http://www.gfcfdiet.com/TheBigFAQ's.htm

Good luck!!

[gfcfmom]

Run, don't walk, away from gluten, dairy and soy...okay, this is DEFINITELY too late, but your son has the best chance at recovery if you continue to breastfeed and completely eliminate gluten and dairy and soy from your diet and his diet.

[gfcfmom]

Run, don't walk, away from gluten, dairy and soy...okay, this is DEFINITELY too late, but I agree with the last poster...it sounds daunting at first but YOU CAN DO IT. I LOVE, LOVE, LOVE dairy and I am completely off it. I drank a quart a milk a day for years and I don't even put it in my coffee now. YOU CAN DO IT!!!

[Leslie]

My son was dx ASD at 19 mo. It is two months later and he is still breastfeeding and I have been slowly introducing GFCF.

According to my research, the reaction to gluten and casein is that the body process it and reacts to it much like LSD. So some of the dazed, detatched social manifestation of ASD could be chemically induced. My research cautioned against eliminating these proteins too swiftly as withdrawal could be a very real reaction. I have slowly introduced GFCF alternatives to my son and myself. I have seen limited improvements. My son's been developmentally delayed, mostly in language, and I figure that I need to give him time on the diet to learn what he may have been missing while "under the influence." We'll see, but I am keeping hopeful.

I am a foodie and have somewhat enjoyed the culinary creativity necessary to keep ds and I well-fed. Eggs are a godsend! Do you know how many different things you can do with eggs? (As long as their is no food allergy to eggs, that is.)

Meringue cookies. If you have a mixer, they're super-simple once you get the hang of them. Consider it a blank canvas for your cookie-creativity.

Zabaglione. Fancy french word for egg-yolk custard. Again, really simple, and something to do with the yolks you didn't use in the merignes. This can be a wonderful alternative to yogurt or pudding and again, the flavor alternatives are limitless.

Just a couple of suggestions. It's totally worth it.

[Debra]

I worry about finding tasty gluten free recipes as gluten has been linked to autism and I prefer to just avoid it all together. I’ve tried tons of different recipes and expensive “organic foods” from the stores but I recently came across this website www.RoseCole.com/HolidayCookBook . Rose Cole who is the nutritionist behind the site puts up all these great gluten free recipes in her Holiday Cookbook that are easy and affordable. I think I’m actually looking forward to cooking on the holidays for once. Lol

[Jane D.]

I found this great site with loads of Dairy Free Holiday recipes. I recommended it to my sister who has an autistic child and she loves it. There is also a cool video on the bottom of the page where Rose Cole (founder) is making one of her recipes www.RoseCole.com/HolidayCookbook

[ugg outlet store]

I wonder what year that was because my parents got six-foot heroes for just about every party I can remember as a kid. I'm going to investigate. Stay tuned or help me out by Commenting below.

[thegeekgirl]

Bleh. I found this site while searching for something else and this kid is long since weaned, but to be clear, gluten (or any other allergies) have NOT been linked to autism. Some parents report positive outcomes from GFCF diets, but sorry parents, you're not objective reporters on this. (and I have an autistic son myself, so this isn't some crazy non-parent telling you what to do)

Kids with autism grow and develop and do great things with time. Kids with autism occasionally have food allergies, but they don't have them at a greater rate than kids without autism. If you change your diet and notice progress many months later, there's no way to say that the progress wasn't just due to time and any other therapies you were using.

So my answer would have been to neither wean nor change your diet. It's hard enough to get an autistic toddler to eat a balanced meal.

[Links of London Watches]

i went to the same school as patrick. i remeber those girls from my school who wrote in. they were white trash...i always felt so bad for them.

[Shahid]

My first child toilet tranied at 2 1/2, and then weaned completely a few months later. So, in her case, she was dry before she was weaned. HOWEVER, there was definitely a time when we were pursuing both actively. And I actually worried that it was maybe too much all at once. But I found that, no, it was actually OK.I think that toilet learning and weaning are sort of complementary skills. In both cases they're about a child moving from a parent-centered way of meeting their needs to a more independent way. And I think that often they seem to happen at around the same time if we follow our child's cues. Which isn't to say that weaning a child will necessarily impact toilet training, so much as when toddler nursing is the norm they often happen concurrently..-= Amber s last blog .. =-.

[Luci]

I don't think the two have to be related. DS was potty-trained at 18 mos. He's now 24 mos and still nuesrs at least 3 times a day. It probably is just the time spent running to the bathroom. Days with less nursing are outside days because he's just too busy. This is something newer to her so her attention is just refocused, I think. In a couple of weeks you may catch yourself thinking why did I even put a shirt on today because she'll be back nursing so much and then you'll wander what you were worried about. Or at least thats how it seems to go here.

[Phil]

Mark Prince / I like the use of the sign very cute.I had an idea the other day for a useful web page agoltuhh maybe it's not legally possible to do it. Without describing the need that brought up this idea, it would be nice if at the top of a page you entered your query and the remainder of the page was two columns with one column displaying google returns and the second displaying yahoo returns side-by-side. The idea was partly spurred on by the design of the popurls.com site. What do you think legal issues?, too difficult? Or does it already exist?

[Maddie]

we can either do a gruaadl process (half formula, half milk) or we can just start giving her cow's milk. He said that some people choose to transition because some babies don't like the change in consistency. But Nellie took right to it, and now she is only on cow's milk.. We did do the half and half thing for the first week or so, but it's been 2 weeks since we started and she takes it like a pro!

[Sezer]

You HAVE to go to the Magic Oven , its a pizza place that is both Vegan and gluten free, and next door to that is live Organics, a Vegan/Raw/gluten free reartusant. Go to both and get inspired by the choices you see. At Magic Oven, we are proud to offer a diverse selection of healthy pizzas, pastas and sandwiches. Our ingredients are mostly organic and natural and we feature local produce as well as local, free-range meat in all our dishes. Our pizzas can be made to accommodate a variety of dietary concerns we offer organic spelt pizzas, gluten-free rice flour pizzas and the option of vegan or lactose-free cheese. Try the alomd delight dessert, it is to die for. These are both in the Dupont area. Actually, when you get above ground after getting off the subway at Dupont, you see them right across the street.Having Millet always in the house means I can make a good oatmeal type dish that is best cold out of the fridge with some rice milk on top. Having quinoa in the house means I can have different types of stir fry's, so I don't overdose on rice. Corn chips always on hand, for having salsa or hummus, Almond milk for coffee and tea, rice milk for cereal. Kensington market has quite a few health food stores, they are your best bet for dairy and gluten free products, and Loblaws has an excellent selection or GF and dairy free foods (Good Karma rice ice cream is amazing). Look for vegan foods, even if you aren't, they have the healthiest and least contaminated ingredients. Hope you can find what you need, I live outside Toronto, and I was blown away by the availability of these products in Toronto, and the prices were half what I have to pay here. So you are lucky to live there!

[Sezer]

You HAVE to go to the Magic Oven , its a pizza place that is both Vegan and gluten free, and next door to that is live Organics, a Vegan/Raw/gluten free reartusant. Go to both and get inspired by the choices you see. At Magic Oven, we are proud to offer a diverse selection of healthy pizzas, pastas and sandwiches. Our ingredients are mostly organic and natural and we feature local produce as well as local, free-range meat in all our dishes. Our pizzas can be made to accommodate a variety of dietary concerns we offer organic spelt pizzas, gluten-free rice flour pizzas and the option of vegan or lactose-free cheese. Try the alomd delight dessert, it is to die for. These are both in the Dupont area. Actually, when you get above ground after getting off the subway at Dupont, you see them right across the street.Having Millet always in the house means I can make a good oatmeal type dish that is best cold out of the fridge with some rice milk on top. Having quinoa in the house means I can have different types of stir fry's, so I don't overdose on rice. Corn chips always on hand, for having salsa or hummus, Almond milk for coffee and tea, rice milk for cereal. Kensington market has quite a few health food stores, they are your best bet for dairy and gluten free products, and Loblaws has an excellent selection or GF and dairy free foods (Good Karma rice ice cream is amazing). Look for vegan foods, even if you aren't, they have the healthiest and least contaminated ingredients. Hope you can find what you need, I live outside Toronto, and I was blown away by the availability of these products in Toronto, and the prices were half what I have to pay here. So you are lucky to live there!

[Carla]

Being both gluten-free and dairy-free is tough, but there are siultoons. Many people use Almond milk or soy milk in substitute for dairy in recipes. If you're lactose intolerant, you might be able to use lactose-free milk. For any specific recipe, just substitute the same amount of alternative milk. Learning to eat gluten free takes time. In the beginning, stick with simple foods like grilled meats, vegetables, and fruits. You will need to become familiar with all the various alternative flours available for gluten-free baking. There are many recipes on the internet that can help you. You need to become familiar with product ingredients. For example, food starch is not safe for persons with celiac disease. You will need to stay away from anything that has wheat, rye, barley, barley malt, and a variety of other hidden glutens. There are specific techniques that can help you learn to cook and bake gluten-free and casein free. Your local celiac association can help you with all your questions.

[Irena]

Mexican Lasagna. This is something that you can make not gletun free or gletun free. I made this for my sister. Just take a flour tortilla or a white corn tortilla for they are gletun free and layer it in a cake pan. Cover them with refried beans. Ahead make taco meat with ortega taco seasoning mix for it is gletun free. Spread the taco meat over the refried beans. Then add some shredded cheese either cheddar or mexican shredded. Then repeat the layers all over again. Bake at 350 degrees for 20 to 30 minutes. Bake until it looks done. Then I like to add sour cream and salsa on top and if you wish you can also top it with shredded lettuce, diced tomatoes sliced black olives. This worked for us for I can make one that wasn't gletun free for me and the kids and one for my sister that was gletun free.