So, after 10 years of living with ME/CFS in our household (10 for me, and 8 for each of our sons), we are embarking on a new CFS adventure: Jamie and I are going to try going gluten-free and dairy-free (as I am already) on the advice of a new specialist we are consulting. The kids are away sailing with their grandparents this week, so I am attempting to prepare for this gastronomic adventure, by learning what I can about gluten and restocking the fridge and cupboards.
Here's a little background in case you are wondering why we are doing this now....
I discovered I'd developed an intolerance to dairy pretty early in my illness - maybe around the second year, just after getting diagnosed. I think maybe Dr. Bell had mentioned to me when I told him about my GI problems that some people with CFS develop food allergies and intolerances. I tried two weeks without dairy and didn't really notice much difference, but when I added dairy products back into my diet, I had a severe reaction and could plainly see the cause and effect. So, I have been mostly dairy-free for about 8 years or so. I have long suspected that my problem was more than just lactose intolerance. I can cheat once in a while, with a small scoop of ice cream or a bit of cheese, and Lact-Aid helps somewhat, but if I have dairy two meals in a row - or even two days in a row - then things get really bad again, in spite of the Lact-Aid.
So, fast-forward to now. If you read this blog regularly, you know that Jamie, 17, has had a really horrible year. On top of his CFS, he also has Lyme disease, bartonella, and babesia (3 tick infections that we suspect he has had for 5 years), and he reacted very badly to his treatment for these infections. It's normal to experience a period of worsening (a herx reaction) when treating a long-term infection, but Jamie was totally incapacitated for about a year.
One of the avenues we have been investigating, with his Lyme doctor, has been the methylation process in his body. Our doctor said that his severe response to treatment showed that his body was having trouble clearing out toxins (i.e. both the meds as well as dead bacteria and other bugs), so I did some research on my own and started Jamie on a modified methylation protocol, designed to help people with CFS to clear this blocked process. I think that might have helped a bit, and Imunovir has helped him more, so he is managing better these days but still not well enough to handle full-time school...and college starts next month.
So, our Lyme doctor told us about a specialist who'd helped some of his other patients. She's a biochemist and a registered dietician, and she works with people with a variety of chronic illnesses. Her approach is to take a detailed history of the patient and the illness, including diet; run a bunch of tests to see what nutrients are not being absorbed properly, what nutrients are low, etc.; and then suggest a diet and supplements based on that individual's own needs.
We decided to give her a try, so my husband and I met her by Skype a couple of weeks ago and told her Jamie's long and complicated history of his illnesses. I tracked Jamie's diet for a few days and faxed that to her, and we had a second Skype meeting. To be honest, I expected her to compliment me on our healthy diet. After all, we eat lots of fresh fruits and veggies, lean meats and fish, skim milk for Ken and the kids, and mostly whole grains. Instead, she was appalled! Jamie was with me on Skype and heard her ask, "Why is he eating wheat and dairy products at every meal?"
She told us that even without running the tests on him yet, she knew she would be recommending a gluten-free and dairy-free diet. Jamie was stunned and fairly upset by this pronouncement. She explained that, for someone with CFS or similar illnesses, it didn't even matter whether they were actually intolerant to gluten or dairy because gluten and casein (a milk protein) both block one of the primary methylation pathways in the body. So, for someone who is already struggling with blocked methylation processes, gluten and casein just make things worse.
So, we will be trying a gluten-free and dairy-free diet. I figured I might as well try it along with Jamie, both for moral support and because maybe it will help me, too.
But I am in need of help! I have less than a week left to figure out how to do this. If you have any advice or tips for me, I would appreciate it...maybe your favorite gluten-free products, how to make a good flour substitute (that will be a priority for me), where on the web to find information on going gluten-free, or your favorite gluten-free recipes.
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.
33 comments:
I have been wheat free and almost gluten free for 8 of my 10 year ill. I found that it does help significantly (until this year when I got ulcers and gastritis after two stomach viral infections). My first tip would be to find a good local gluten free bakery if you can. You can try different things and I can find almost all my favourites there (cookies, pizza dough, bread, rolls). As for pasta, some of the corn pastas are almost as good as wheat and the rice pastas have improved over the years for sure. Best of luck, I hope you both notice a difference. My advice it to find your favourites if you can....we give up enough with this illness, we don't need to sacrifice more.
Upnorth -
A gluten-free bakery?? Wow, do such things really exist? My husband is searching online and said he found a couple of local bakeries that do offer some gluten-free items. Cool. We will definitely have to check that out! Thanks for the tip!
Hi Sue
I think the hardest part of being gluten free is the breads, BUT you can purchase them if you can have some sugers...Gluten free has become a big money maker, our stores here carry quite a few products. Joel and I are now totally grain free and dairy free and sugar free.....I make things using brown rice flour in the past but now use almond meal and coconut flour. Coconut flour has alot of fiber and protein. Anyway, we have something made by Soy delicous that is made with coconut milk that is a good alternative for ice cream. Gluten free flours by Bob's Red Mill are good....and you can get a gluten free oats but not all are gluten free I guess..that is controversial. Joel said he did not notice the difference when he went off gluten but when he went back on after being healed of Lyme..........eating it would take away all his energy and the next two days he would feel a lot of fatigue and weakness! If I think of any recipes I will send them. There are even places you can go to eat out and they will have gluten free meals!!! Joel does that. Good luck.
Try this one, if you like crock pot cooking:
http://crockpot365.blogspot.com
I am too sick to try cooking anything this ambitious but some of these recipes look really good. They are all gluten free. She has a Celiac daughter so the whole family decided to eat gluten free at home. (it also eliminates issues of cross continuation of kitchen tools)
If you like to go out to eat or order in a lot of places are creating gluten free menus, so you can just google restaurants and check if they have one or not. For instance I know the Season's has a gluten free pizza. Also, a friend of mine bought gluten free rolls the other day at Acme, check out the bread aisle and see what you can find!
Yes, there are GF bakeries. Whole Foods has already made GF goodies and also lots of mixes. The first reaction is to find GF substitutes for what you normally eat. Two things to be wary of; GF stuff while decent doesn't taste like the real deal. It will take lots of trial and error to find stuff you like. I gave up with sandwiches altogether. The bread is just too nasty. Toast yes, sandwiches no. Second, the GF stuff is often made with flours that are genetically modified. If you are having trouble detoxing in general then going completely grain free on a Paleo diet might be a better solution.
That said here is a list of web resources along with my own GF recipes: http://baffled-fastfoodie.blogspot.com/p/resources.html
This is also another good place to start: http://www.glutenfree.com/
This lady has THE best GF Paleo site for baked goods out there: http://www.elanaspantry.com/
If you have any questions email me. I've been GF for over eight years and Paleo for ten months.
This is quite an adventure you are starting. I think you will be surprised at the results. I have had some interesting improvements when I got rid of all grains in my diet. Good luck and keep us updated. I'm very curious how it works out for you both.
Hi Sue! Hope you enjoy browsing through these sites, if you haven't stumbled upon them already.
http://www.glutenfreediva.com/
http://glutenfreegoddess.blogspot.com/
http://glutenfreegirl.com/
http://asgoodasgluten.blogspot.com/
http://glutenfreemommy.com/
http://noglutennoproblem.blogspot.com/
http://getoffgluten.blogspot.com/
I have benefited a lot from a combination of alkaline+blood type diet and going gluten-free is a bit challenging because foods with gluten are those that the body tends to crave for (I think!). Anyway, I wish Jamie well with the new diet and thank you for sharing your experiences on your blog.
I find Ancient Harvest brand quinoa pasta to be a great substitute (as opposed to the gooey rice pastas). You can order boxes of it online or find it in some stores like Whole Foods.
After a gluten-free period, make sure you try some wheat again to see if there's a reaction. If not, perhaps you will be able to go back to your favorite breads again. At least that's what I did when I found no difference on and off diet (I went GF for 4 months).
Also, this video about allergy-free foods is hilarious!
http://www.youtube.com/watch?v=k9QbC41oQRo&feature=youtu.be
I don't do gluten free, but King Arthur Flour sells a gluten free flour mixture, or all the components to mix your own.
Yes, Baffled, I agree. If it were just me, I wouldn't bother with substitutes - would just eat more veggies and other foods and drop the gluten.
I am looking for certain substitute products and tips for Jamie. I forgot to mention in my post that his favorite foods are ALL grain products - pancakes, pizza, cereal, bagels, muffins, etc. So, this will be difficult for him. Also, he doesn't have a very wide repertoire of tastes like I do (despite my considerable efforts since he was young! the range of foods he likes has actually gotten smaller as he's gotten older).
So, that's why I am trying hard to find some suitable subs for some items....like pancakes!
Thanks for the advice and the links - I will check them out!
Sue
Thanks Renee. I had heard of brown rice flour but not coconut flour. Replacing some of the fiber lost from whole grains is one of my concerns so that sounds good to me, as long as there's no coconut flavor (I love coconut but Jamie does not).
And we just tried the Soy Delicious Coconut Ice Cream this week - so good!! Really, hardly different at all from the coconut ice cream (from milk) I had last week. Again, though, the coconut flavor may be too much for Jamie - we will experiment with different flavors! He does love ice cream.
I have been hearing differing views on oats so i e-mailed our dietician today - Jamie and I both love our oatmeal. It would be easier if we didn't also have to give that up!
Thanks for the suggestions and the encouragement!
Sue
I do use my crockpot, especially in the cooler weather - will check this out. Thanks!
I;m guessing this comment is from someone local?? That's great news! I will check for those.
Elaine - she did quiz Jamie on whether he "craves" bread products. Thanks for all the great links - I will check them out!
Sue
Thanks for the pasta tip - I am definitely on the lookout for a decent substitute for family dinners (with 2 people GF and 2 not).
Will also check out the video - thanks!
Thanks, Jennie - we are going on a scouting trip tonight and will look for it!
As you know this has been the path we are taking. BUT also SUGAR free and I'd highly recommend it if you can - read up on sugar!
his favorite foods are ALL grain products - pancakes, pizza, cereal, bagels, muffins,
SMile when helping other people I always ask what is their fav food - this is usually the item one needs to let go of the most.
I have found substitues are expensive and do not taste like the real thing which brings more want.... Instead we eat very differently and basically we eat fruit, veges and meat organic as much as possible.
Yell if I can help in anyway.
Love Leanne
Prepare to learn a lot, experiment a lot and pay a lot for substitutes. My 16 year old is GF and has a similar palette to your son. We actually have found GF pizza at a local shop and keep GF frozen pizza crust in freezer at home. Pancakes turn out pretty good with Pamela's or King Aurthur's GF mixes or I make our own with white rice flour and xanthum. Crepes, brownines and angel food cake recipes tolerate substitue flours as well and even Betty Crooker GF cake and cookie boxed mixes are pretty good. Bread is difficult to find tolerable ones but she like Against the Grain frozen bagette bread - tastes a bit like pop overs, not as dry as others but pricey. Pastas are pretty good if corn but we don't care for the rice. Our local Wegmans carries GF store brand pasta that is good and cheaper than national brands. Macaroons made with almond flour are wonderful. The biggest difference is that GF stuff tastes pretty good fresh but tends to dry out real quick and not be good the next day. We make things and freeze left over muffins etc - which works out well when too tired to cook. only oats marked GF are GF and of course more expensive. Do you have a Wegmans down there?? They carry GF things in their health food section and lable marinades and other things GF Instead of soy sauce get which really helps. Instead of soy sauce try Braggs Amino Acids found in health food section - tastes the same but GF. Good Luck -its been quite an adventure here learning all this but its not bad once you get the hang of it.
Our favorite gluten free pasta is Tinkyada. If you don't have easy access to a g-f bakery, consider getting a bread machine & using bread mixes. Of course, some are better than others. KinniKwik or Kinnikinnick makes a gf baking mix that makes very good hamburger rolls, and probably would make basic white bread also. Even though it doesn't need yeast for leavening, it will add a lot of flavor and help condition the dough. King Arthur is one of the better bread mixes.
I gave up on GF bread -- opting for wraps instead. However that was 18 months ago when I went GF and there are many more options today. Glutino has some wonderful GF bagel chips! There is a really good GF Pizza crust and brownie mixes. I really don't miss it, other then occasional old world white squishy Wonder bread -- but I had given up simple carbs nearly 10 years ago anyway (but an occasional blt or pbj as a treat is no more.
There are many restaurants now that serve GF, including many chains - even Olive Garden. However we do NOT like the corn pasta. Stick with brown rice - try cooking it using the energy saving method, less starch and virtually eliminates soggy batches (boil water, add pasta boil for 2 to 3 minutes cover and remove from heat, let stand 20 to 23 minutes). GF pasta if boiled then entire time can make a creamy soup type water and it sticks to the noodles.
I know I have more tips, but I can't think of them. We replaced fiber with veg. Often I will have a hamburger with lettuce as the bread. Also try home made baked French fries (cut potato into the size fry you like spray parchment or pan with GF olive oil spray (or use olive oil) and put fries on pan, spray the tops and salt if you like then bake 375 for 35 to 45 min depending on thickness). We put things on them like chili or beef or stew or nachos. Oh, and you can find lots of corn taco shells!
Good luck -- I'll let you know if I think of anything else.
CFS/ME and MCS (multiple chemical sensitivities) diagnosed 1987 (age 24) after 5 years of illness.
The foods you mentioned are the toughest ones to find good substitutes for. Watch out for the xanthan gum, some people have bad reactions to it.
Most boxed pancake mixes are pretty good. The rest will be trial and error. I never found a bread I liked. I would pay $5-10/loaf eat one piece and throw it out so I finally just gave up on it.
I now use spaghetti squash instead of pasta. Personally I can't stand the rice pastas and prefer the corn based ones but I always buy the European corn pastas to avoid GMO corn. There are also potato based and quinoa based pastas. None taste like the real thing so just try different ones until you find something you like. I've also been using julienned zucchini for noodles which work out great.
There are quite a few GF cereals on the market, Chex has several, Envirokids and Puffins come to mind. You can still eat oats but buy Bob's Red Mill GF ones. They are guaranteed to be free from cross contamination.
Plus if you are reacting to gluten you might also be reacting to coffee. Can't remember why right now but it has to do with some complicated biochemistry. If you improve on a GF diet you might want to try cutting out coffee as well if you haven't already.
I also second the motion on the crockpot365 blog. I have both of her cookbooks and the food is pretty good and easy to make even for us CFSers. I highly recommend getting her first cookbook Make It Fast, Cook It Slow. Totally worth it.
Yes, I agree, Leanne regarding substitutes. If it were just me, I would just give up stuff with gluten in it. But this is going to be very tough for Jamie, especially at first, so I will try to find some subs for his favorite things!
Sue
Ahhh...Wegmans! As you know, Char, I am from the Rochester area originally, so I know and love Wegmans! Unfortunately, there isn't one near us - the closest one is about an hour away :(
My husband and I did explore the new Whole Foods here last night and brought home lots of GF things to try and stuff to try subbing for flour. Thanks for all the tips and ideas!!
Sue
Thanks for the tips! We do have a bread machine, and I will look for some of the things you mentioned.
Sue
Thanks for all the great idea, LifeTrek!
Where do you find GF wraps? That's something I was looking for yesterday at Trader Joe's and at Whole Foods and couldn't find. I am fine with just subbing corn tortillas, but my son really prefers flour tortillas. Finding some good GF subs would be great!
I have heard that many chains now offer GF items. We don't normally eat at chain restaurants - just prefer the little local places generally - but we may have to try some out now.
And you mentioned GF oli spray...don't tell me that Pam has gluten in it, too?? Sheesh, it just gets worse and worse...
Sue
Oh, no, Baffled, I just bought some xantham gum last night = I'd heard that adding it to GF flour mixtures helps in some recipes. We will watch out for that, too, I guess.
I gave up all caffeine, including coffee, about 20 years ago! I stick to my favorite herbal teas!
Thanks for the extra tips!
Looks like you have lots of good suggestions here! I encourage you to reach out via your blog & post questions as they come up b/c someone is likely to have had experience with it! Of course, we'll all have our own opinions on favorite pancakes, flours, etc., so the best way will just be start experimenting (as your energy allows).
I really feel for you! I've been gluten free for almost 10 years but recently decided to put my 4 yr old on a gluten free, dairy free diet to help with his sensory processing disorder and I admit even I am overwhelmed! It's one thin when it's one of us, but our kids? A whole 'nother ballgame entirely. good luck & reach out with questions!
You said it, Pamela! That's true of every aspect of living with chronic illness - my own illness is one thing, but dealing with my kids is something else entirely!
Sue, I am like your son, not a fan of soft corn tortillas (the sour smell I think is a warning to my allergies), but I found a brand LaTortilla Factory in our local grocery -- Nearest WF or TradeJoe is an hour away.
http://www.latortillafactory.com/products-6.aspx
They sell fast at our store here -- there is a buy link at the factory store.
They are big, about 10" across so I typically eat half as a sandwich.
We don't eat at chains, but went with friends about 6 months ago and was impressed that they had that option. Local places will often let you bring your own pasta, but make sure they understand the handling issues and cooking issues.
Actually, in the past 3 years we eat more and more at home and prefer it as you can get more vegetable to starch/fat proportions.
Many fast food places (which we rarely do but learned when we had a family emergency/death and were up at all hours traveling and staying out of town) are becoming friendly. Five Guys - good, Burger King - (Whopper no bun and FF (but ask they be treated separate from Rings), I just read that McDonalds had FF tested and showed no Gluten (when they replaced Beef with oil shortening they flavored the oil with a wheat based product.
I think Pam is GF, but we switched almost all oil to Olive oil and you have to look at EVERYTHING.
Local restaurants here are VERY good at helping -- even have GF Pizza for delivery (but now we prefer King Aruther Flour brand GF Pizza Crust at home)
http://www.kingarthurflour.com/shop/items/gluten-free-pizza-crust-mix
Subs, like I said, I gave up on bread -- tasted to me like you would imagine the dried up foam from a car seat that ripped in the 80's and hasn't been repaired. But I have heard of some really good bun type harder rolls that were GF, but haven't tried them.
However, beware of some lunch meat, some of the additives or flavorings can be gluten. There is no such thing as reducing Gluten! It can take more then 6 weeks to eliminate from your lymphatic system and more then 6 months for your reactions to stop -- and one bite can set you back!
Rule number one:
BRING YOUR PHONE AND GOOGLE EVERYTHING YOUR ABOUT TO PUT IN YOUR MOUTH!
You'd be amazed.
Good luck, keep in touch!
(Sorry if I ramble, brain fog comes and goes, lol).
Oh, couple things:
Check your meds/supplements for gluten or lactose!
Try chili dogs over home made fries, Yes, you'll miss the bun but not as much. (Nothing tastes the same but you substitute).
Last thing, sorry memory isn't really good tonight. My situation is complicated as my body decided, just out of the blue, to become allergic to black pepper! Do you know that black pepper is in EVERYTHING! Yep, I would have never left Europe for the spice routes all those years ago!
I got CFS 2 days after a severe allergic reaction to amoxicillin allergy test, almost a year ago now (before that I was a fit 24yr old guy). I became allergic to the dairy casein protein 30 odd months prior to that. If I have any dairy, the reactions aren't any worse with CFS, but it does affect my CFS for the worse.
I was just like you, I could cheat sometimes with a bit of dairy as a once off, so I thought it just lactose, but no it was casein. So I avoid it at all times now.
Thanks for the blog it's awesome.
Caleb :)
Post a Comment