I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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Friday, July 27, 2012
New Diet Countdown!
Our new gluten-free, dairy-free diet begins with dinner tomorrow, when our kids will return home from a week with their grandparents. I am worried about how this will go for my 17-year old son, Jamie, but am hopeful that perhaps it will make a difference for him. I really appreciate all the fabulous tips and advice you've been leaving for me on my last post on this topic - it's all been so helpful in my crash course to learn what I need to quickly! I still have a few questions, though, plus a bit more information to share.
I should have mentioned in my first post that this whole thing would be no big deal if it were just me. I recognized my own dairy intolerance many years ago and adjusted fairly easily. I wouldn't even be bothering with substitute products if it were just me - I'd just eliminate foods with gluten. However, Jamie is a typical teen boy, whose tastes aren't as broad as mine and whose favorite foods all feature gluten or dairy or both! He loves pancakes (especially pancakes), bagels and toast, pizza, ice cream, peanut butter sandwiches, and cereal with milk.
He eats whatever vegetables we have for dinner but only because he knows they are good for him, not because he enjoys them. He does love all kinds of fruit, mashed potatoes, and a good steak, but otherwise, his favorites are almost all now on the no-no list. So, that makes this all especially challenging, and I know that the only way he will stick to it for very long is if I can find or bake some reasonable substitutes for at least some of his fave foods, at least until he gets used to this more.
My husband and I went shopping yesterday, stopping at Trader Joe's and the new Whole Foods store located about a half hour from here. We filled our cart with gluten-free items, including cookies, bread, bagels, English muffins, and other things our son is going to crave. I know from all of your wonderful advice that some of these products might not be great, but it's a starting point.
To make matters worse, I have learned that oats are also off our list. I was hearing contradictory information on oats - some sources said they were gluten-free but prone to cross-contamination so had to be avoided (unless labelled "gluten-free"); other sources said they were to be avoided completely. I checked with our dietician who cleared it up for me. She explained that although oats do not contain gluten, they do have a protein called gliadin which is a very similar molecule to gluten and that someone with such severe metabolic problems as Jamie needs to avoid oats as well. That's bad news because Jamie and I both love our oatmeal!
She also added as an after-thought, "best to avoid corn and soy, too." What?? You've got to be kidding. What's left? I was already counting on subbing soy milk for milk and corn tortillas and chips for flour tortillas and other salty snacks. Then, today, I received her full set of dietary recommendations, which also limits certain fruits and veggies and recommends avoiding peanuts at first. If I take the poor boy's peanut butter away, there'll be nothing left for him that he likes to eat! She agreed that this can be done in steps and that eliminating gluten, casein, and oats are the most critical first step, so that is what we'll be focusing on.
I also bought lots of different baking products to try last night, though I don't always have the energy to bake homemade stuff. I got pancake mixes and brownie mixes (two top priorities!) to try, plus several different types of flour substitutes and gluten-free flour blends.
One area I would love some advice on is ideas for breakfasts and lunches. With no gluten, oats, or dairy, what on earth do people eat for breakfast? I was really counting on keeping our oats! I also have low blood sugar and wake up starving in the morning - I need protein and whole grains and lots of fiber to fill me up enough, otherwise I am hungry again an hour later! My usual breakfast is whole oats (or a multi-grain hot cereal blend from Trader Joe's - no, no, no!) with fresh fruit on top, chopped walnuts, and soy milk. Jamie usually has either cereal or oatmeal, often with fruit (and, of course, milk). Eggs are an obvious choice, but without a slice of whole grain toast, I'll be hungry again soon after. Any breakfast ideas out there?
Lunch is easy for me - I normally have leftovers or eggs - but Jamie's lunchtime favorites are peanut butter and banana sandwiches, whole grain bagel with peanut butter, pizza, and (the only remaining option!) one brand of split pea soup that he likes. I've heard that most of the GF breads aren't all that good on their own or for sandwiches. Lunch ideas for a teen boy??
Dinner will be easy - our dinners rarely include gluten now, and I eliminated dairy from most of our dinners when I stopped eating it. The one exception is pasta, which we probably only eat once or twice a month, and we bought several GF pastas to try. But I would appreciate hearing what others on a gluten-free/dairy-free diet eat for breakfast and lunch. Thanks again for all the help - I couldn't do this without you!
I'm interested to hear about how this goes for you both.
ReplyDeleteI've considered trying gluten free, but I just don't think that would work with my family dynamics. But, I do have a resource for you.
One of the bloggers that I follow has quite a few gluten free (and some dairy free too) baking and meal recipes.
Here is a link:
http://theprettybee.blogspot.com/p/keep-in-touch.html
If you scroll down there on the page are links for the gluten free recipes and the dairy free. I hope that may help a little.
Also, for a time I didn't drink milk and I found almond milk to be a wonderful substitute!
Thanks for the link, Sarah!
DeleteI think if you go in thinking you will try it for a month or two and then see how you feel.....feeling better will out weigh the losses. I would recommend Almond Milk, vanilla flavored or Soy Delicious coconut milk....many different brands. I eat eggs for brk or almond flour quick bread with almond butter on it. I also eat pancakes made with just three ingredients....egg, almond butter and a mashed banana and i use almond butter and blueberries on top. Those are even very sweet for me since I have not had sugars for so many years. I often eat veggies for brk..roasted ones, and I put broccoli in my scrambled eggs for variety. Brk. is the hardest! There are gluten free granola bars Jamie might like. We ALWAYS toasted our bread made with br. rice flour and often still toast our paleo breads. Just makes it easier. Joel was and is eating gluten free...our Lyme doctor too and she eats the Red Mill gluten free old fashioned or steel cut oats. I think it would depend on the person maybe. It is why I went paleo though...the cross contaminated and the genetically modified grains. I truly have so much more energy and less stomach issues being totally grain free. sure hope this all goes well BUT it takes time, Sue. Hard at first, but like anything we adjust. So many blogs that write about being gluten free and have great recipes. Wishing you well.
ReplyDeleteAh, yes, Renee...once again, if it were just me...Jamie says (vehemently) that he HATES almonds and coconut...so that is why we need the soy milk in his diet for now.
DeleteThanks so much for all the great ideas!
Renee..awesome sounding pancakes...must try those!
DeleteAs I said for US it has worked easier to work out what we can eat more than not eat.
ReplyDeleteBreakfast is eggs or fruit.
James is highly allergic to eggs so he has rice bread or left overs.
I find I cook a bit more each night and that is bags often by the first kid.
Soup, rice for breakfast - I know I know way different than wheat products....
Breakfast I have always found the hardest.
I'm with you I'd hit wheat out of the diet first - hopefully jamie will see and feel better - then when he has a little bit he will feel also how unwell it can make him.
Love Leanne
Nuts and fruit! I'll eat two apples and some berries and 2 servings of nuts. But I LOVE fruit - if I could survive on that alone I would!
ReplyDeleteI often get Bob's Red Mill oats, I just couldn't give up my oatmeal.
Veg and homemade hummus or and I like this best Broccoli dipped in olive oil and balsamic (if you can tolerate vinegar).
For lunch I often do the wraps I mentioned in the last post(they are corn free as well as gluten free). However lately I have been just having the lunch meat by itself. But I was trying to reduce calories.
I'll often have dinner leftovers for breakfast, I don't do mornings so I cook a bit more for dinner to eat in the morning.
Eliminating corn means popcorn too, yikes!
Thanks for all the great ideas! I will definitely be eating plenty of nuts...but Jamie only likes peanuts! And even then, he claims to only like peanut BUTTER, not peanuts - LOL! I can sometimes slip some finely chopped nuts into various dishes but he'd never eat them whole or plain. Teenagers!
DeleteBut I am definitely going to order those wraps you mentioned!
Buckwheat pankakes made with soya milk are good. I often eat refried beans with eggs and a couple of rice or corn cakes for breakfast. Or if I have the energy I make a flat bread with ground up seeds (linseed or flax seed with sunflower seeds and pumpkin seeds) and gram flour mixed with a little olive oil and water, rolled out then pan fried without oil.
ReplyDeleteI don't know whether it would be to Jamies taste but I find a great picknick food to be onion bhaji's and pakora made with gram flour. Mix the flour with curry spices and water to make a thick and glupy batter then add finely sliced onions or a mixture of grated vegetables and deep fry for a few minutes(or shallow fry and turn over half way through) I usually bake them for 10 minutes aswell for best results. You can make a big batch and freeze the after frying then bake them when you take them out of the freezer.
I've heard Mozzarella cheese is one of the least harmful cheeses, so a Pizza treat once a month or so with a gluten free Pizza base might be a good reward and worth the sin.
Good luck!
Buckwheat doesn't have gluten??? Woohoo! Sure enough, I looked it up and read that buck WHEAT is a misnomer - it is gluten-free. I LOVE buckwheat pancakes! That's great news.
DeleteI appreciate all the ideas - you guys are just full of wonderful information!
The breakfast problem was solved in our house by using breakfast shakes - very quick, easy and they hold you til lunch. You can substitute in which protein source works for you. In blender add almond milk, 1/2 banana,almond or peanut butter and ice cubes. Or make a fruity one with OJ, frozen fruit, 1/2 banana and protein powder(I use Standard Process Complete bc organic and loaded w veggies too.)When teenager was fussy, I even made chocolate(soy, rice or almond milk) - banana- peanut butter combos. The advantage of a breakfast shake is :easy, quick, extra fluid and they go down quick with a straw. Be sure to rinse out blender if using protein powder as it dries on if left for awhile and the shakes are best fresh. For those not dairy free yogurt is a great addition too.
ReplyDeleteChar - You read my mind! I was just thinking about breakfast shakes/smoothies (lying in bed at 6 am this morning unable to sleep!). That's a great idea, and my kids love smoothies. And I thought that the soy yogurt might work well for smoothies, even though it doesn't taste very good on its own.
DeleteI will definitely try some of your suggestions - thanks!
Another snack for teenagers is Rice Check trail mixes that you can make. Recipes on box- my girls liked the one make with nut butter and dark chocolate of course. I'm not saying that its healthy but it was quick and easy and their friends liked it too which made it good to share.
ReplyDeleteGreat idea! I did buy a box of Rice Chex this week. I used to love it when I was a kid. Not much fiber in it, but tasty!
DeleteCan you find Pamela's baking mix? You can use it for a number of things but we absolutely LOVE the pancakes and the waffles you can make from it. THey probably sell it at whole foods or maybe a co-op if you have one. A must for pancake lovers and WAY easier than mixing your own what with the 700 ingredients that must go in a gluten free baking mix (wait, I may be exaggerating a bit)
ReplyDeleteI will look for it! It's Sunday morning which means pancakes at our house, so I am going to try out 2 versions of gluten-free pancakes this morning - one from a pre-made mix and a simple homemade recipe from one of my blog readers.
DeleteWish me luck!
Michael gets a dairy free break every couple of weeks - that seems to help. Our next door neighbor makes a gluten, dairy free chocolate cake that is unbelievably good.
ReplyDeleteGood idea, Faith! And I would love that chocolate cake recipe!
DeleteI like smoked salmon. Works well for a snack or breakfast or lunch. High protein, no gluten, no dairy, no corn, no soy. Other fish works well too, like tuna.
ReplyDeleteCan he eat rice? I like cream of rice instead of oatmeal. Add some cinnamon and it's sweet. Add some veggies and it's savory.
Beans with veggies are also good for filling up on.
I think the key is to not think of certain types of foods as being breakfast or lunch foods and just eat whatever food is on your diet for any of the 3 meals. That works for me at least.
Good advice!
DeleteBear with me this is going to be long.
ReplyDeleteMilks: rice, almond, coconut, soy (but not recommended since unfermented soy is difficult to digest and some camps say is outright bad for you). Soy DOES screw with hormone levels so it really isn't a good choice. Make sure the milk substitute doesn't have added sugars or carrageenan in it which is another nasty chemical. Nut milks and coconut milk can be made at home with organic ingredients and no sugar or chemicals and it is easy to do. Let me know if you want the instructions.
Breakfast: Eggs, steak, bacon, sausage, fruit smoothies with protein added as either nut butters or rice protein powders, fish(shrimp and salmon are my favs), hot cereal made with other grains such as buckwheat groats, teff, rice or amaranth, muffins made from alternative flours, make a vegetable stir fry to go with the eggs, onions, mushrooms, leaks, bok choy, asparagus, scallions are all great.
Peanut butter alternatives: almond butter, cashew butter, sunbutter, applebutter. Keep them in the fridge after they are opened since the oils can go rancid in the hot weather.
Since you are eliminating most grains, you will need to add good fats back in to your diet so that you will feel full. The best fats are saturated animal fats from pastured animals. Check with your nutritionist and see if she will let you use organic Ghee. It has the casein removed so is often tolerated by people who normally can't do dairy. Otherwise, get some 100% grass fed suet from Whole Foods meat department. You can call and order it. It is cheap and then render it down so that this becomes your primary cooking oil. This is easy to do and only needs to be done once every few weeks. It keeps for months in the fridge or freezer so if you made a large batch conceivably it can be made only twice a year. It can also be purchased from US Wellness Meats but they have a minimum purchase of 7lbs & $70 so you can't just get lard/tallow if you put in an order.
Try to get your carbs from fruits and vegetables instead of grains. Have lots of fresh fruit and nuts available for snacks. Easy to grab and no prep work involved. I also had rice cakes on hand when I first went GF but I don't eat them anymore. Envirokids makes some nice GF "granola" bars.
ReplyDeleteAs far as lunches go:
Invest in some smallish containers and put together a variety of things making sure there is protein, fat and carb. Fruit with nut butters. GF crackers, muffins, cookies. Anything that goes into a sandwich can be eaten without the bread: chicken salad, egg salad, tuna salad, ham salad, rolls of lunch meat such as ham, beef or turkey with a little mustard for dipping. Pepperoni slices, salami slices, beef jerky. I used to buy wraps and then eat the innards tossing the wrap in the trash. I used to call these "wrap gut" lunches. Vegetable sticks with salad dressing for dipping.
Here is a great resource for recipes and ideas:
http://www.chowstalker.com/
just type in breakfast or lunch into the search box and tons of stuff will show up. It is basically a collection of recipes from Paleo/Primal bloggers so you will end up all over the web and discover all sorts of neat sites. Paleo is no grains and no dairy so anything there is automatically GF and DF.
A few words on the psychology of things. I found that since my body is incredibly reactive I've had to make the dietary changes slowly. Pick something once a month to concentrate on changing. If you have to go cold turkey then make an agreement with yourself, I will do this for one month with NO cheats. Then try a small snack of the pure food and see if you feel like crap. More often than not the reaction will be bad enough to keep you on the strict diet. However, this will not work unless the offending food is out of your system for four weeks first. Even small cheats will negate the elimination protocol. It is much easier to think in 30 day chunks. Your brain can wrap itself around it easier.
Also while you are eliminating foods out of your diet try adding new ones in. Bring home a new fruit or vegetable to try once a week. I've been pleasantly surprised many times and this has given me more foods to work with.
I've also had to add activated charcoal and bentonite clay into my supplements in order to help my body detox from the foods that got eliminated. If you are having trouble with the detox process, the diet eliminations can cause a severe herx reaction (as I found out the hard way). If the herx reaction lasts more than a week try some activated charcoal. If that doesn't work see your nutritionist. You might have to back off and do one food a month so the herx isn't as bad.
Lengthy comment, i know, but this is a difficult and long process. If you have any questions at all just ask. I have tons of resources, vendors, cookbooks, blogs, etc I can recommend. Just ask.
We love trail mix for breakfast. We make our own, from 1/2 various nuts and seeds & 1/2 dried fruit. We started this for something easy. It's actually the best breakfast I've tried as far as feeling satisfied & not running out of energy for a few hours. I love it with Greek yogurt, but am reconsidering the whole dairy thing.
ReplyDeleteI munch on rice cakes a lot - still grain, but not a lot. They are very good spread with peanut butter. I also sometimes spread peanut butter on a banana and eat it with no bread.
ReplyDeleteHi - I'm from the UK so can't recommend specific products for you. however my miracle ingredient is xanthum gum, if you can get it. It allows you to make decent cakes.
ReplyDeleteBefore I go on let me said that gluten free not only gave me my life back for about 5 years (until excessive exercise caused more problems) I also found that many people with gluten problems can tolerate dairy when their gut recovers from the gluten. You have to be really strict and if you don't see an improvement after 4-6 weeks it probably won't help. However if you do see an improvement it will continue to improve.
Back to diet help - http://www.piginthekitchen.co.uk/ is a good website and recipes can probably be adapted for the US. If you son will accept gram flour I sometimes use gramflour flatbread like a pitta wrap. Gram flour can be used as an egg substitute. I'd also suggest checking out coeliac websites and vegan websites for cooking ideas . http://www.celiacsociety.com/
Good luck. If it doesn't help look into gut acidosis and maybe fecal bacteria transplants.