Double Trouble

[Goliadman]

Hello,

I have been battling along with my 3 member family with the misery of fighting two terrible diseases in two family members. 11 Years ago, my younger daugther, now 23, was diagnosed with very serious Lupus erythematosus. Our family doctor told my wife and me 11 years ago when the diagnosis was made of severe illness that our daughter won't live to be very old. It was very somber, and sickening. My wife fell apart, and our daughter has endured extremely difficult procedures including 100 of blood tests now, systemic kidney disease, gained 100 lbs in 2 years of intensive prednisone and chemotherapy, plus numerous other meds for skin rashes (Plaquenil), and 3 hypertension medications! The first chemo was Imuran, and now Cell Cept, a hugely expensive chemo apparently used in particular for kidney disease, and other immune reducing measures to quell the progress of this disease. I mention this first because it has been a nightmare of multiple doctors, consultations, battling with Soc. Security which denied her any benefits whatsoever on 4 years of trying to deal with their idiotic completely inappropriate reasoning. We are nearly bankrupt, and I can't ever consider retiring. But I am very sick and tired myself as well. Now, this year, my wife was diagnsed with Celiac Disease. The huge problem she has is, naturally, the huge diet restrictions. I can't buy much of anything off the regular supermarket shelves, and of some 4 books and numerous articles I've read, the restrictions of all grain, and a huge number of most products with any added preservatives, or flours of any kind, except in some case, rice flour products from the health food store are considered OK, and must state clearly on the box, Gluten and Wheat free. Also there is some question as to whether she should even have any milk products. So I buy Land O Lakes butter, and lactose-free milk. She eats only the foods such as natural fruit (apples, carrots, grapes), and apparently ice cream may be a problem. We use Ener-G products' breads, and she only likes the brown rice gluten free, wheat free kind. Meats? As long as they are without sauces, marinated, and free of any breading,,I or she makes them stricly grilled, and sometimes we have cooked ground chuck hamburgers without any bread or buns. I read every label on all the grocery goods, and most have lots of junk in them which are in the literature listed as unacceptable. The bottom line is we have another nightmare in addition to our daughter, who may be slowly dying. Are meats required to be limited to fish (scaled variety only), and chicken and turkey that are unadulterated with preservatives? That is hard to find, and most of the health food stores with hundreds of pill, liquid, and capsule supplements, and mostly only rice flour recipe packages for baking, and cookies or chips seem to limit what she can eat a lot. She has been observing very careful eating, and we hardly eat out at all, but find Mexican food seems to be the least offensive to her gut. I get Kraft Colby cheese and cut it up for her lunchs at work, and send only fresh fruits, apples, carrots, and grapes as a daily gluten-free diet. With all the limitations, she still after about 8 months of this or more has constant problems with diarrhea. All the colonoscopy exams, biopsies, etc have been done to confirm Celiac Sprue, and the nutritionist at our major hospital was not very helpful except to read off a print out rather than show much knowledge about Celiacs. I don't think the docs know what to do otherwise. I am worn out, am not a good cook, and still work, so both my wife and I come home to a sick child, and we are too worn out to cook very much. The other problem is we are very limited in what we can cook. It needs to be fast because we have little energy left at the end of the day. It's seems to be a depressing Catch-22,,a no-win situation. I've read The Maker's Diet which is very limiting, and another book where the author eliminates so many products that my wife has very little choice except some Amy's gluten free frozen foods that are OK, but still limited. I'll stop now. Sorry for the long post.

[Guest nini]

First of all, take a deep breath and try to relax... I know, not that easy...

Secondly, Lupus and Celiac are related and both your daughter and your wife will benefit from the gluten-free diet (Read Dangerous Grains, this will help explain it all)

Third, You really need to make sure that everything they eat is 100% Gluten Free and not contaminated. Even a little bit will continue to make them ill.

Fourth, the diet may seem overwhelming at first but can be quite easy when you get the hang of it. This site is a great source for finding out everything you need to know about gluten-free foods...

ok, so you aren't a great cook and you are tired from working, understandable... Start with very basic meals, baked chicken and steamed veggies with steamed rice or baked potatoes, baked pork chops,

baked fish, grilled meats (but make sure the grill is very clean and the meats are not contaminated with marinades that might not be safe and make sure if you use charcoal that you use the wood briquets, regular charcoal uses wheat as a binder), you can season the foods with salt and pepper and McCormick brand spices (always double check the labels)

as far as the dairy issue, a lot of celiacs initially have problems with dairy until their insides heal, some are allergic to dairy, so you'll just have to use some common sense on this one.

Good luck and welcome to the board

[Claire]

Regarding your daughter's condition. She may well be dying if she continues on the medication merry-go-round. One of these meds is bad enough - more than one is toxic and while they may mask symptoms - they do not cure. Worse than that, a body that is already stressed by illness does not need to be poisoned.

First of all - get your daughter gluten free. If you can afford even one visit to a Naturopathic doctor (ask for a recommendation from your local Health Food Store). Ask for help from this doctor for gradually removing the meds from your daughter's life. If not all the meds, at least as many as possible.

I posted a Gluten Free Buying Guide today that should help you and your family find the information that you need. It is not nearly as bleak as you seem to think. This is in the new posts for today Oct 9. If you find this message later, the post is in the Foods section. Claire

[Eliza13]

Was your daughter ever advised to go off gluten? Stong correlation b/w celiac and Lupus.

Skar.

[Guest BellyTimber]

Best of wishes.

You may find more meats than you think are OK for you - I didn't understand the piece about meats andfish - the only criterion is no contamination by wheat-barley-rye-oats-spelt. (Wheat includes kamut and triticale.)

(Unless you have other restrictions as well)

Also more grains may be OK - the above mentioned are probably the only bad ones (though some people have to avoid others)

Life from now on will become completely oriented to food - shopping - cooking etc.

I have found my adjustment over the last 3 years difficult and am in most ways only just beginning, and not feeling all that much fitter yet either.

If you cook, cook an extra portion and freeze or refrigerate to take to work next day, then you have some suitable food in hand for when you have less time/or more tired/confused/distressed.

Include more green veg such as cabbage, spinach & broccoli for the calcium.

Among my most treasured pieces of equipment are my:

- slow cooker

- bread machine

though I'm irregular in using them.

My home is small so I am turning half my sitting room into a pantry - unopened food packets, tins and pots & pans on shelves, and the crockery behind glass doors. That leaves the kitchenette itself for food preparation which is getting slightly easier.

Stick to these forums and keep asking questions & sharing viewpoints, I've always found (since discovering them) it helps me to know there are people out there that know what it's like. As a single person it's different for me than for you with a family but, even if I couldn't implement the suggestions straight away, it meant the world to me that someone knew some information of use to me.

[Rachel--24]

I agree with the other posters...get your daughter on the diet. There *is* a strong connection between Lupus and Celiac. She will most definately benefit from being gluten free.

I would also recommend reading "Dangerous Grains".

[debmidge]

golidaman

I wish you peace in your situations...you are overwrought and have every right to feel that way. Your family and yourself are all tired. The cooking is a chore and in beginning hard to get right (label reading and calling manufacturers are key). You need to cook large quantities of gluten free foods and get big containers so that you can have the left overs all week. It's best to do this so that you don't feel like you are always cooking.

Good foods to make large quantities: brown rice, mashed potato, a large rump roast, a couple of roaster chickens, any combination. Plan out your menus, shop for what you need and then cook when you can. Also, gluten free pasta with cheese and ground beef casserole (brown ground beef, melt cheese with milk, and combine with cooked gluten-free pasta, add some onion, etc. if you want, and bake for about 25 mins at 350 oven). A large amount should last you a few days too.

I often make gluten free corn bread in AM before work and slice it out and freeze slices for later in week. I do the same with gluten-free bread (but since you have more than one on this diet, you'd use the loaf that same week). I use a dedicated bread machine (gluten flour was never used in this bread machine). Same goes for toaster and other machinery type devices, like pasta machine, etc.

If you visit the Celiac Sprue Association website, they can refer you to a local support group that will assist with finding obscure gluten-free ingredients, etc. You don't have the time or energy anymore to think and need someone to provide a pathway to where/what to go/do. The support group should help when you need face to face help. The group on this board is very, very supportive and will help you all that they can.

Where are you? City/State? Perhaps someone on board is nearby and can give you info about shopping, etc.

Wishing you peace . D

[debmidge]

golidaman

I wish you peace in your situations...you are overwrought and have every right to feel that way. Your family and yourself are all tired. The cooking is a chore and in beginning hard to get right (label reading and calling manufacturers are key). You need to cook large quantities of gluten free foods and get big containers so that you can have the left overs all week. It's best to do this so that you don't feel like you are always cooking.

Good foods to make large quantities: brown rice, mashed potato, a large rump roast, a couple of roaster chickens, any combination. Plan out your menus, shop for what you need and then cook when you can. Also, gluten free pasta with cheese and ground beef casserole (brown ground beef, melt cheese with milk, and combine with cooked gluten-free pasta, add some onion, etc. if you want, and bake for about 25 mins at 350 oven). A large amount should last you a few days too.

I often make gluten free corn bread in AM before work and slice it out and freeze slices for later in week. I do the same with gluten-free bread (but since you have more than one on this diet, you'd use the loaf that same week). I use a dedicated bread machine (gluten flour was never used in this bread machine). Same goes for toaster and other machinery type devices, like pasta machine, etc.

If you visit the Celiac Sprue Association website, they can refer you to a local support group that will assist with finding obscure gluten-free ingredients, etc. You don't have the time or energy anymore to think and need someone to provide a pathway to where/what to go/do. The support group should help when you need face to face help. The group on this board is very, very supportive and will help you all that they can.

Where are you? City/State? Perhaps someone on board is nearby and can give you info about shopping, etc.

Wishing you peace . D

[debmidge]

I like buying my fresh meats at Whole Foods, a little pricey. I once saw turkey made by ?? don't remember who, but it said GLUTEN FREE on the label. It is my understanding that Butterball doesn't inject anything gluteny in their turkeys, just don't use any packets that come with the bird. But you should call Butterball to check it out...

My husband relies on plain tuna fish in can to get him through week (and salmon).

[tarnalberry]

You sound stressed, with good reason. I second the thought that your daughter may find benefit from the gluten-free diet as well, particularly by following a diet of naturally gluten-free foods and maintaining as healthy of a diet as possible. You don't have to be a master chef to cook healthy, gluten-free meals, but it takes some time to learn it if you don't already know - like any other skill. Take a look at the recipes section of this board, and feel free to ask questions.

For finding food: print out the safe/un-safe list from this site and keep it with you; it's a very handy reference. Meats without any additives (the stuff freshly wrapped in the butcher section can't have gluten as an additive without it being labeled) is safe and provides a variety of protein sources. Fresh fruits and vegetables provide many nutrients and plenty of carbohydrates and fiber (the starchy vegetables can replace grains from that perspective, having pasta sauce over sweet potatoes instead of pasta, for instance). And there are grains that she can still have - the most readily available being corn and rice. Beans and lentils are also safe, again, provided they don't have anything added to them. Eggs too.

This board will help you find safe foods and recipes, but is also a fabulous place for support and understanding about the struggle.

[lovegrov]

You will find there are many things you can buy that you don't think you can now. It does NOT have to says glutn free on it.

AS for meats, the law requires that if a raw meat like pork, beef, poultry or fish has something like wheat or barley in it, it must be very clearly listed. Virtually every rawunmarinated meat out there is gluten-free.

richard

[JUDI42MIL]

You may not as you say be a good cook, but you surely sound like such a loving father and husband. I have celiac and lupus, and a million other related diseases. I found since on the diet all my other stuff is so much more under control.

I dont eat meat, so I cant help you there, but because of exhaustion, I cook up once a week, a pot of rice and a pot of some kind of beans. Seems with those two items around I can quickly when too tired through something healthy together.If I dont eat them after a few daysm I dump them in a pot, add veggies, and gluten free bouillon cubes and ,make some soup.

Good luck to the three of you.

[Merika]

Whew, that is a lot! hang around on this board for a while, and you'll get some good ideas and a better sense of celiac and the (very good) prognosis for it.

May I suggest 1) a rice cooker. Get a good brand like Zojirushi (sp?) with a timer. You can add your water and rice in the morning before work and program it to be done for whatever time you come home. Make extra to send with your family for lunch the next day.

2) www.savingdinner.com is a weekly menu-mailer online. You sign up (free sample mailer) and every week get emailed six nights of recipes - simple, easy to cook ones, some even in a crock pot. They even include the grocery shopping list It's a no brainer.

They offer several types of menus (regular, low carb, vegetarian, frugal, etc.). I'd say pick the low carb. Read through it and substitute gluten-free items for things like pasta and bread with things like rice pasta and rice. Beware of sauces - just make sure the brands you use are gluten-free. I get the vegetarian one and do this. It's great and has significantly reduced the stress around dinner.

Buying and eating gluten-free foods will become second nature. It is not the crisis it appears to be right now - or rather maybe it is a crisis now, but will not be forever.

It would be helpful if you could have someone with celiac come to your home to help you get completely gluten-free (you sound unsure as to whether you are or not). You may be able to connect with someone here, or there may be a local celiac group you could find someone at. At least you could get some good information and support.

If your wife is still experiencing D and not feeling better (not 100% better, just somewhat better) one year after going gluten-free, have the doctor rerun the tests to find out if she is still ingesting gluten. After one year gluten-free, the tests should come back "normal" because the celiac anti-body will not be active. She will still have celiac, and must continue to eat gluten-free, but this is a sign that the body is healing. If her blood test comes back positive, you will know somewhere in her diet (even at work) there is gluten sneaking in or cross-contamination somewhere.

I hope you find what you need here,

Merika