Discussion Board

Hi.

I am Lucy. I am 40 years old. I was just diagnosed with Limited Scleroderma.

I have combed the net gathering info on this. I have emailed Dr. McDougall. I have gone vegan.. but of course, not just plain old Coca Cola and potato chips vegan, but MCDOUGALL Vegan, which we all know means no oils, fats, etc...

Ok. as difficult as that is, I can deal with it, because my health is worth it.

BUT NOW.. I read all of this about GLUTEN and its connection to autoimmune diseases....

and it seems that Gluten is in, Oh, I dont know.. EVERYTHING.

So, no animal products. No oils. Now NO GLUTEN?

It sounds like unless I am going to order steamed broccolli and a baked potato every time I go out ( and that includes at breakfast time ) that restuarants are a thing of the past. ( Trying to eat out low fat was murder; going vegan cut my choices down to weeds, bread and potatoes-- which unlike most people here, I really dont care much for potatoes unless they are prepared in an un-healthy way-- but now the bread / oatmeal / pasta category is out as well, so I cannot even fathom what restaurant eating will now become )

I went out yesterday and bought lots of rice milk... only to read a few minutes ago how rice milk has a small amount of gluten in it???

I want to eat healthy. I want to stop the Scleroderma in its tracks.

I like to go out to eat without being forced to eat plain baked potatoes and a bowl of dry lettuce all of the time.

I like to shop without paying large amounts of money for weird, gluten free products. ( which is a joke anyway, because it seems like everything that I pick up has some other forbidden ingredient in it, like oil or egg whites or meat )

If I have to be a gluten free vegan -- a gluten free, fat free, all natural, chemical free vegan-- thats fine, but I can tell you right now, other than eating nothing but lettuce and baked potatoes for the rest of my life, I swear I have no clue what to eat. ( I was going to say beans, but no more than a cup of beans per day because they contain too much protien????? )

Oh, and not to mention the whole gluten coatings on pills, gluten in hair mousse and gluten in face creams thing...

I cant talk to anybody around me / in my family about this; they all thought I was mentally ill when I went low fat. When it came to vegan, I swear, I think I would have been better off announcing that I was a puppy kicking satanist.. there is no way that I can tell them about the gluten issue. They already think I am a mentally ill, weirdo food fanatic, and I cant lie, if I were on the outside looking in, I would think the same.

Vegan, ok.. low fat, ok.. Gluten free, ok... but to be ALL OF THOSE?

How do you get thru the day, never mind LIFE, being a Gluten free McDougaller?

And not only that, but how do I know for sure that Gluten is even a problem for me? should I just assume it? ( considering the Limited Scleroderma diagnosis.. but how do I know it was the Gluten that aggravated or brought that on? maybe it was meat or other animal products? )

1) How do I find out if its really needed for me, for my health / condition, to give up Gluten?

2) if it is found to be something I need to give up, how does one live a Gluten free, McDougall life and subsist on something other than potatoes? (I could live the rest of my life and never see another potato and be very happy )

If I sound frustrated, I am. i will do what is needed for my health, but im telling you, there is not much left on the food list that I can give up and still shop in normal grocery stores and go out to eat every now and then.

For example, its Friday night. the loved ones will want to go out to dinner:

Chinese? oh no. MSG. Meat. Oil. Noodles. I am tired of ordering 3 pea pods, a carrot and a garlic clove,-- all steamed -- and paying $10.00 for the priveledge. that is no longer chinese food. the joy is gone.

Pizza? well, before i could have said SURE, pizza is fine, just hold the cheese and put extra veggies on top.. but now the crust is OUT. that leaves 3 slices of onion dunked in some tomato sauce. Pasta? not any more.. that leaves just a puddle of tomato sauce-- IF and only IF-- that tomato sauce contains no oil! again, the joy is gone.

Whats left to eat? where is left to go? everything is MEAT, BREAD or PASTA. I can find all of the veggies I want.. all coated in some sort of DAIRY or OIL based sauce or dressing.

I am now back to STEAMED VEGGIES and a PLAIN POTATO. I am sorry, but I refuse to pay $10.00 ( or more ) for that in a restaurant. I can make it at home for about $2.00. I wont enjoy it either way, but at least at home, I save $8 or more dollars.

What about AFTER dinner? cant go out for ice cream. cant go out for sorbet.. who knows if gluten is hiding in it.

Ok.. what about hitting up the coffee bar?

Uh, no. Caffeine is out. Soy milk? contains oil and fat, and tastes like the cats behind anyway. Sugar? not your buddy. Artificial sweetener? I dont want to grow another head.

Ok, so plain, black decaf.. MMMMMMM!! gross!! again, I am not paying $4.00 for the priveledge of drinking a cup of hot black cr*p. I can do that at home for about 50 cents. ( but wait. not so fast.. how did they remove the caffeine from that coffee? bet they used chemicals....)

Back to steamed broccolli, a baked potato and water.

I just want to live, be healthy, and enjoy the food I put in my mouth without having to make a major federal case out of every single meal.

I need some help. any advice you have will be greatly appreciated.
( please, no flames.. my health is worth it for sure, but this Gluten thing is the last straw-- not only that, but if I ever do master it, I just KNOW that 3 years from now I will find out that there is some other unknown evil food-- that was previously thought to be healthy-- that I will then have to give up )

Things like this is what make people chuck it all to the wind and eat whatever, whenever.

Umm, you've seen this, right?

Your frustration strikes me as odd because, although I have no problem with gluten and do indulge in bread, my diet is otherwise gluten-free (and meets all your other criteria) by default. I think f1jim's advice may be in order here: Stop trying to reproduce your familiar diet in healthy form. Don't eat "products." Rebuild from the ground up. Forget about restaurants for now.



In theory, and I have no experience with this, the answer is pretty simple: Go on an extremely limited diet (e.g., a "Mary's Mini" based on sweet potatoes) until the symptoms remit (give it a couple weeks at least, and you must be absolutely strict), then introduce a lot of wheat (only -- don't confound it with other new foods) for a day or two and observe. If you don't react, repeat with the other "usual suspects" (soy, dairy, nuts, eggs, corn, nightshades, etc.) until you do.

HTH

Hi, Lucy.

Some of the items on the list Tannery linked contain gluten (wheat berries, barley, triticale), but many don't.

Here's what I eat every day:

B: oat groats & blueberries, ground flax seeds, green tea
L: sweet potato, beans, oat groats, corn, apple, banana, plum, green tea
S: brocolli, sweet potato, banana, green tea

Some oats may have some gluten from cross-contamination. If that were a concern for me, I'd go to another grain -- rice or quinoa. Other than that, I think I'm gluten free.

I get more fruit than Dr. McD recommends but it doesn't seem to be a problem for me. If I get bored, I vary the type of bean in my bean/corn/oat groat dish between pinto and black.

When I visit my parents, I take my meal with me and I only eat what I bring. When I go out with co-workers or family, I take my meal with me and order some tea from the restaurant if I want to let them charge me for something.

Am I unconventional? Sure. Am I wierd? Some would say definitely. But it works for me.

Have you seen Burgess' blog about how he resolved his inflammation by experimenting with his food? It's a great story and answers many of the questions you pose. Here's the link: http://anti-itisdiet.blogspot.com/2007/ ... ation.html

I didn't catch how long you've been McDougalling...first of all it seems to me that if you can follow the McDougall plan as strictly as possible for a good period of time--a few months perhaps, you might be able to assess how this is affecting your health. If it's getting better, perhaps there will be no need for you to go gluten-free. That seems like the first step.

You can be tested for celiac disease, as I'm sure you know, and it might make sense to have the blood test as long as you are still eating wheat. That might (or might not) give you some information to go forward with.

If you reach the point where it makes sense to try a gluten-free diet (or if you're really at that point now), then think of it as an experiment. Give it a block of time (six weeks? two months? others may have an opinion) and do it as carefully as you can so the experiment will be valid. Then do a wheat challenge, as already discussed here, to see if you can detect any difference. It's possible that the result will show that it doesn't matter whether you eat gluten or not.

On the other hand, if gluten does appear to cause you problems, and you are motivated to avoid it for your health, do not despair. There are many ways to make it easier; you do not have to be 'deprived' entirely as there are many products now, such as bread mixes, etc. that you can prepare with vegan ingredients for occasional treats. You will adjust if you need to. Also, your tastes will change and you will find some foods tasty that you don't now.

Finally, I wondered why you don't mention brown rice? My husband and I eat brown rice as nearly 50% of our starch. We love to sautee some vegetables Chinese-style (though with no oil) and eat them with rice. There is wheat-free soy sauce, by the way so you can get it to taste authentically Chinese with the right seasonings. Yum!

Frankly, you'd be better off avoiding restaurants until you have your health under control, and until you have some eating patterns better established. You have to find foods that you like--try the McDougall Quick and Easy Cookbook for yummy ideas, or some of the other cookbooks they have as well as recipe suggestions on this board. There are many really delicious things you can eat, you will discover. Once you have a firm footing, you will find it pretty easy to order in restaurants again--save that step for later. People here will have good advice about how to do that.

All the best to you!
--Anna

edit: Sorry, I just read some of your other posts and now realize that you are trying the elimination diet, so some of my remarks are not applicable. But remember, the elimination diet is an experiment to find out what things affect you and which don't--you will eventually find out what you can eat and will be able to have a more varied diet!

Eating strictly McDougall is not much different then what you have to do to also be gluten free. I agree, restaurants are basically no fun (in fact, I consider them dead to me) but you can do it easily. Steamed vegies and rice in asian restaurants. salads with no dressing and steamed vegies (most will do it) everywhere else. When I go out with friends/family I put a small jar of my brown rice made with mushrooms and onions and celery and I quietly dump it on my salad plate at a restaurant. No one has ever said anything. Also, I do eat heartily before going to a restaurant in many cases. You go to be sociable not really to have fun eating. I MUCH more enjoy eating at home now. I eat:

oatmeal
cooked vegetables and raw vegetables
cooked potatoes and sweet potatoes
corn torillas
any bean or legume whole
brown rice
any fruit

That is a wonderful bunch of choices once you change your whole mental paradigm about eating.

Bring your own food in a container to relatives/friends. dump it on the plate and microwave it. No problems for them. And you are happy.

I get that it is hard for people to think you are insane or a nut. I don't like that either. I struggle with it. But I will not participate in my own destruction and being thought odd (at best) or wrong headed and insane is the price I pay.

Riva

To All Who Replied:

Tannery:

I think its great that your diet is Gluten free by default. This sounds like a great feat.. from just the tiny little bit I have read, it seems that Gluten is virtually everywhere, in places obvious ( bread ) and in places not at all obvious ( coatings on pills ) and it seems so very overwhelming to me.

As far as stop trying to reproduce a non McDougall type of diet but in a healthy way, no, it doesnt work. I tried that already, and ended up wasting money by trying to create vegan versions of my old favorites. All I got was inedible garbage. I agree that its much easier to start from the ground up.

Riva and Tom,

Thanks for sharing an example of what you eat, its helpful.

I have done the thing where I bring my own food out to eat and to relatives homes, etc. I know thats not much of a problem, its just that the things I used to bring ( and the vegan foods I got used to ) had gluten. Its definitely worth it-- being thought of as an eccentric nut job-- but its not fun, and I am tired of it. Still, like you, I would rather be thought weird than be sick just to make others "like" me, or so that others can be socially comfortable. As for Burgess, yes, I have seen his site.. it floored me. He is my idol.

Anna,

I think you said exactly what Dr. McD says.. follow the regular program for a while.. give it a chance to work, and see how you do, as the regular program may be all I need. Also, during this time, it might be a good idea to be tested for the Gluten sensitivity. (although I hear conflicting things about testing.. I hear that false negatives are common, and on the other hand, I also read that almost everyone will show some form of sensitivity to gluten, whether it causes a problem or not.. I am note sure what to beleive regarding testing. ) I asked Dr. McD about certain tests, ( not just the Gluten test, but testing in general ) and he adv that testing is expensive and not always accurate, to just go by how I feel. You mentioned brown rice.. and I like it, but my "go to" seasoning is Soy Sauce.. Gluten. I know there are other seasonings, its just that it was hard enough to find something vegan and fat free that I liked, and now I have to find something else.... I know my tastes will eventually change; they have already started to. It will definitely be hard to give up restaurants; I know I will be better off, but.. its just a big part of my life. I just need to get over it. I mean, sure I can order plain, steamed things, but to be honest, there is no point in paying money for that. Its like going to the movies, paying $12.00 for a ticket, then covering your eyes and ears once you are inside the theater; yes, you are still out with friends, but its not the same. I will have to accept that. I do have the McD quick and easy cookbook. I will have to get more friendly with it.

I guess I will have to give up on the elimination diet for now. I think I need to strictly McDougall for a few months and see how I feel; then, research it very well and stock up my house with the correct food, and then try the elimination diet and see if I feel any better or notice any differences. I think I need time to "settle in" to the realization that eating this way is no longer something I can toy with and stop and start when I want; its now something I HAVE to do, and I have to wrap my mind around that and not only learn to live with it, but embrace it.

Once I can comfortably "walk" as a vegan, then I can try to "run" with the elimination diet, and if need be, to go gluten free. If I need to do that, I hope it doesnt prove to be as diffucult as it seems now.

Thanks again for everyones input.

Lucy
[[/b]

I think Bragg's liquid aminos is gluten free,also.I've tried going gluten free occasionally...it's tough!! Just stick to the regular program...try writing what you eat daily & see how it affects you.
I had a test done with www.enterolab.com , & no,everyone is not gluten sensitive.
Relax...eat your veggies...enjoy
more on gluten...you might want to read Gluten Frre Girl...v.good book..she also has a blog www.glutenfreegirl.blogspot.com/ she's not veg, but has a wonderfully positive attitude..

or tamari sauce (tastes just like soy sauce to me):
http://www.amazon.com/Tamari-Sauce-Reduced-Sodium-Organic/dp/B0000CE3T8
http://www.merciasnaturalfoods.com/saortawhfrso.html
http://www.myethnicworld.com/p-3481-san-j-organic-tamari-wheat-free-soy-sauce-10-oz.aspx
http://www.pacificeastwest.com/073899775007.html
Eden Foods also makes one, though I didn't happen to spot a link for it.

We can find this at two different health food stores even in Nebraska, so I'm sure you will be able to find it. Really, don't worry about this for the time being. If the time comes that you need to try gluten-free, you will find suitable foods.

Dr. McD is probably right about the testing being inaccurate--if you are patient with your food trials, you should be able to discover what is working for you and what isn't. Good luck!!!

Hi Lucy,

Its possible to eliminate all those things and still eat well. I do!

My current favorite gf breakfast is quinoa cooked with apples, raisins and cinnamon. We cook a variety of whole grains for breakfast.

Potato and lettuce is one of my new fast foods - as long as you have a baked potato on hand, you can cut it into pieces and roll each piece in a lettuce leaf with a dab of salsa. Pretty tasty ... and filling ... and fast!

Salads with lots of fresh veggies are always good, but sometimes I want something more substantial. Then I top the salad with a thick lentil soup or some other type of filling topping.

Kale and onion stir-"fry" is a favorite here. As are green smoothies (water, banana, orange, spinach). Other greens work too, but spinach is the "sweetest". You just have to experiment. My husband "creates" recipes; I take the "search and modify" approach. If its overwhelming to do everything at once, do it in stages.

Oh yes, we choose not to eat out, but I think we're in the minority.

Good luck!

I too try to avoid gluten when possible. Besides being on Mcds i also am lactose intolerant and that does limit my food list of OK foods.
Thank goodness I can have soy, otherwise I would go plumb crazy.
I don't miss going out to eat like I used to, now at least I know whats in my food when I cook it my own.
I try to keep my eating plan simple, and am trying so hard to make food not the center of my life anymore. I wont to focus on life not food.
Good luck and enjoy the journey with out feeling so deprived.

Hi Lucy
I have been dealing with lots of food allergies and Hashimotis Thyroiditis which turned into thyroid cancer for many years. I am eating a gluten free diet. I am allergic to soy and wheat and dairy and tons of other things. It is possible to eat a very simple GF diet and live a happy life. What others think is not important. Your health is the most important thing and others (especially family) must honor the fact that you are taking charge and taking care of yourself. When you stand firm in your beliefs and your choices they will stop making fun. It is not your problem what they think. People who have not been though what you have do not have a basis for their comments.

Here is a sample of my day's diet

B: GF oats by Bob's Red Mill - with frozen blueberries and cinnamom and a cut up apple. Red tea - Roobois tea

mid morning snack - cut up fresh vegetables like red pepper, baby carrots, cherry tomatoes, cucumbers

L: steamed spinach or other vegetable with brown rice

mid afternoon snack: homemade fat free hummus with whole grain brown rice crackers - maybe a piece of fruit

D: Large salad with fresh lemon and maybe some more brown rice.

I eat alot of food and am very happy with my diet. I have been strict McDougall diet for over a year now. My allergies are getting much better. I have more energy and sleep better. I am overall much happier now that I have completely eliminated gluten from my diet.

I read the posts everyday but rarely post, but I feel for you and what you are going through. I'd be happy to help in anyway that I can.

You can do it.
Best to you,
Jessica

What Jessica said above is totally true.

It seems overwhelming at first, because everything is so totally different than before. But your health is also going to be totally different than before. I too don't eat gluten and only rarely corn or wheat, and have no problem eating a delicious and varied diet.

Rather than be overwhelmed, start solving one problem at a time. Breakfast is a good place to start. I order gluten free oatmeal (over the net) and have that for breakfast every morning with some seasonal fruit, a dash of cinnamon, and a spoon of ground flax seed. I never get tired of it, and it is part of our morning routine.

For lunch, I just about always have a mixed salad with sweet potatoes and lime juice, a bit of fruit, and some leftovers from a recent dinner.

My dinners are usually centered around potatoes, sweet potatoes, beans, brown rice, lentils, etc. There are lots of recipes here.

Right now you are experiencing a sense of loss, which is natural. It is a lot of work to restructure your life around these new foods, and there is suffering in withdrawing from the old foods. But everybody here will tell you that it is SO worth it.

It is really funny in life how some of the things that seem initially to be the worst of luck turn out to be the best of luck. That is how I view my diagnosis of coronary artery disease. I hope the same will happen for you.

Hehe, yep, done that! I eat a very simple diet mostly out of sheer laziness/busy-ness and lack of culinary skill. Typical lunch for me is something like:
- greens, steamed in microwave, totally unseasoned
- nuked sweet potato, plain
- Eden no-salt beans, straight from the can
- maybe a fruit



This doesn't make sense to me. Your goal is to determine whether you have celiac disease, right? Why not tough it out for 2-3 weeks and have your answer? Besides, you'll find that something like an elimination diet or "Mary's Mini" type diet is a shortcut to kicking the food addictions anyway. And the gluten may turn out to be a nonissue, in which case you can relax (and in which case, like I said, if I were in your shoes I'd push on through and test dairy, soy, eggs, and all the rest till I nailed it.) Or you may find that diet has nothing to do with your scleroderma, in which case you can also "relax" in a sense. Why not?

My son can't do gluten, dairy or sugar. He breaks out pretty bad with eczema. I eat the way he does as well. This diet is great for everyone but especially him. I have given in more than ususal with him as it is hard with social function and going out to eat is really hard. Occasionally if we do go out it is for mexican food as he can get a corn tortilla or a corn taco without cheese and with beans. But there are not a lot of choices.
We sometimes will do brown rice pasta( which you can buy at the health food store) and is wonderful. You just cook it up. I will sometimes make a fat free dairy free pesto with the pasta, or spaghetti, or add it to a veggie soup. I don't do it very often as I am trying to lose weight and eat more than I should. We do lots of potato dishes and am excited to try basil pesto potato salad recipe I found of FFvegan site. I like mexican food so we have that at least once a week. I love to make corn tortillas with black beans and rice and salsa, or enchiladas(hashbrowns, spinach wrapped in corn tortillas and topped with enchilada sauce), or black bean burgers in a corn tortilla. Most of the time it is a baked potato with homemade ff, gluten free gravy or homemade fries, or some other potato dish. Then I make some sort of soup, my kids like broccoli potato soup the best, then it is usually a rice dish of some sort. I love to make brown basmati rice. I love to cook it up, add a little gluten free tamari sauce , ginger and garlic.
And for breakfast and if I am hungry for snack it is oatmeal. I also do fruit, veggies and green smoothies. I make my son a homemade gluten free, dairy free bread, that is so so good. If you want the recipe let me know. I try not to eat it a lot, because again trying to lose weight, but it is sure nice to have around for a quick sandwich for my son or when we are going someplace that I know is going to have something there that we can't eat. It is handy. I used to make a lot of gluten free healthy desserts, but kind of stopped because I ended up eating them too.
Kathy

Bob, I'm guessing this is just a typo, but on the off-chance it isn't I wanted to make you aware that wheat is a major source of gluten!