How Can I Help A Celiac Long Distance?

[ARK]

My sister was diagnosed with Celiac disease a few months ago, then a few weeks ago we found out that my son has it as well...

So, I have learned a LOT - it is overwhelming to figure out this diet when you are feeling well. I dont know how anyone could do it when they are GLUTENED!

My sister is in a major FOG and she is too overwhelmed to even try to go gluten free. She is very sick - cannot cook for herself, or even read labels.

I sent her a list of what foods are safe to eat, and her husband can do the shopping for her.

However, he has to work full time, so he is not always there when she needs to eat. He has been trying to get her to start the diet ever since she got the diagnosis, but she has resisted until now. She says she is ready, but needs help.

Her kids could bring snacks to her, and even do some basic cooking since the oldest is 12.

Does anyone have any ideas on what I could do to help her? I am a 10 hour drive away and I can not get away from home due to having a farm to run.

I am going to mail her a few mixes to try and see if she likes them.

What else?

Thanks,

ARK

[Guest nini]

where does she live? maybe you could put her in touch with a local support group that might be able to help her?

[Guest cassidy]

The thing that is best for me is making food ahead of time and freezing it in meal-sized portions. If someone in her family can cook her something like lasagna and all she has to do is put it in the microwave, that might be helpful. It can be hard to get up the motivation to cook when you don't feel well. Maybe you can send them a recipe and give them some direction.

Also, I would think keeping her up to date on what you have found that is good for your son. All the gluten-free snacks and breads are so expensive that it is helpful if someone can tell you not to waste your money on certain things and steer you towards the good ones.

Another thing that took some time in the beginning was to find gluten-free alternatives to my favorites. Now if I want spaghetti, I buy Tinkyada and Emeril's tomato sauce. In the beginning it was overwhelming because I would have to get online and find out what spaghetti sauce was gluten-free and have a backup in case the store didn't have the first one. I now know what brands I want for everything I eat, but a list like that would be helpful. I also printed out the list of companies that don't hide gluten. I put that in my purse and put gluten-free foods on it as well so I wouldn't have to remember what I looked up in the beginning. If you can get those lists to her husband it may make shopping easier for him.

The last thing is just being there for her. It is challenging in the beginning and having someone willing to listen is always helpful.

[Sophiekins]

I always suggest that people start their diet with just plain rice - with some steamed or boiled veggies and a little cheese or meat if they're feeling up to it. Twelve is plenty old enough to do minute rice or nuke some fresh or frozen veggies - you can even try using Uncle Ben's microwaveable rice packets if the expense is not an issue. Baked potatoes are also easy to do (either in the oven, which takes at least an hour, or in a microwave which takes 10-15 minutes). Chicken or turkey can be poached easily in a microwave in a few minutes. Send her some gluten-free cereals or things like crackers or cookies (Pamela's does excellent ones. . .) she can nibble on before you send mixes - if she doesn't have the energy to cook, mixes could backfire by making her feel like feeding herself is too complicated. Think simple and fresh - celery with peanut butter and raisins (the kids can share that one, and even the younger ones can help make it) or cheez whiz (gluten free, I am told); raw veggies with cream cheese or a gluten-free salad dressing for dip (or try my fave, 3 cheese dip: equal parts cottage cheese, and grated cheddar with about half as much parmesan). . .

If your sister has a crockpot, they can try simple stews using water as a base - chicken stew is one of my favourites (chicken, potatoes, sweet potatoes, carrots, beans, onions, turnips. . .thyme and oregano for herbs, just boil in some water with salt and freshly ground pepper to taste. . .if you get adventurous, you can add gluten-free dumplings or cornbread); basic beef stew is also pretty easy (beef, canned tomatoes, potatoes, carrots, onion, turnip, parsnips). These can both be done on the burner of a conventional stove, but perhaps her husband could help prepare one in the morning for the crockpot until she's up to cooking?

And get yourselves good long distance plans and talk regularly - the hardest thing about going gluten-free is remembering to eat, followed shortly by remembering why you wanted to do it in the first place; so it's important that she have someone to talk to during the bad moments.

[kbtoyssni]

Gosh that's a tough one. With my mum I send her emails all the time with information I learn on this board. Things to watch out for, foods that may have contaimination issues, etc so she doesn't have to worry about doing the research herself. It sounds like your sister's husband is doing most of the research in this case, so you might want to send the info to him, too. Initially it's very time consuming to research whether different brands contain gluten so if you can just send a list of "safe" brands that eliminates most of the time (sounds like you've already done this, though).

If you can help her get her kitchen completely (or nearly) gluten free, it should be much easier for her because she'll be able to eat anything in the house. This would require the support of her whole family.

[ARK]

Good ideas everyone - thanks so much! Some were new to me as well, and will be very helpful.

I ordered some pasta and some mixes to be sent to her to get her started. I hope she will start the diet ASAP so she will be feeling much better sooner.

[Corkdarrr]

My parents live 15 hours away from me and I know it's been really tough on my mom to listen to me go through this and not be able to help.

probably the best thing she's done is just to LISTEN. being newly diagnosed, I'm full of information that I've just learned and desperately want someone - who doesn't think I'm insane - to listen to. She's listened, she's made an effort to look into the whole gluten free aspect of life, become more aware of what she's eating, and she even sends me gluten-free treats she finds when she's at the store.

Her emotional support has been invaluable to me

Courtney

[GFBetsy]

Would you feel comfortable sharing general information about where she lives? (A metro area, perhaps, or something like "North-West Texas" or something like that?) Then maybe there will be one of us on the board who will be closer to her and could perhaps give her some area specific help.

Also, I would recommend that you find some really good recipes that are easy to make (try Leanne Ely's book "Saving Dinner" or www.eatingglutenfree.com for some ideas). That will give her a start on eating gluten free without having to worry about finding recipes. In fact, you might try coming up with a complete 2 week menu for her (breakfast, lunch, dinner) that includes recipes for every meal and a list of needed ingredients (including safe brand names for pre-processed ingredients like chicken broth). This will be a lot of work, but it will be very helpful for her (as long as you make sure that she would be willing to eat all the things that are on the menu list). Include as wide a variety of foods as possible - mexican, chinese, fish, chicken, beef, etc. so that she doesn't feel like she's going to have to eat the same foods every single day for the rest of her life.

Also, try talking to your neices and nephews and getting them on board the whole diet thing. They don't necessarily have to eat everything that mom eats, but they need to realize that it is important that they NOT make any negative comments about Mom's food for the next little while. No "Can't I eat REAL food tonight?" or "MOOOOOMMMMMM! I'm tired of rice!" Help them understand how frustrating this is for your sister right now, and how important it is that they be helpful and encouraging.

If you want to spend some money, you could always log onto amazon .com and order some gluten free products and have them sent to her house. Or gluten free cookbooks.

Good luck!

[ARK]

Would you feel comfortable sharing general information about where she lives? (A metro area, perhaps, or something like "North-West Texas" or something like that?) Then maybe there will be one of us on the board who will be closer to her and could perhaps give her some area specific help.

Also, I would recommend that you find some really good recipes that are easy to make (try Leanne Ely's book "Saving Dinner" or www.eatingglutenfree.com for some ideas). That will give her a start on eating gluten free without having to worry about finding recipes. In fact, you might try coming up with a complete 2 week menu for her (breakfast, lunch, dinner) that includes recipes for every meal and a list of needed ingredients (including safe brand names for pre-processed ingredients like chicken broth). This will be a lot of work, but it will be very helpful for her (as long as you make sure that she would be willing to eat all the things that are on the menu list). Include as wide a variety of foods as possible - mexican, chinese, fish, chicken, beef, etc. so that she doesn't feel like she's going to have to eat the same foods every single day for the rest of her life.

Also, try talking to your neices and nephews and getting them on board the whole diet thing. They don't necessarily have to eat everything that mom eats, but they need to realize that it is important that they NOT make any negative comments about Mom's food for the next little while. No "Can't I eat REAL food tonight?" or "MOOOOOMMMMMM! I'm tired of rice!" Help them understand how frustrating this is for your sister right now, and how important it is that they be helpful and encouraging.

If you want to spend some money, you could always log onto amazon .com and order some gluten free products and have them sent to her house. Or gluten free cookbooks.

Good luck!

A menu is a great idea, altho a REALLY hard one. I will try it tho, and a grocery list to go along with it. Thanks!

She lives in east Texas, near the LA border, in the general vicinity of Logansport.

I ordered some stuff for her, but not from Amazon. Is that the best place to shop as far as good prices go? I need to order some pasta for my kids, but dont want to spend any more than I have to!

[Susanna]

Wow--your sister is really sick--I'm so sorry to hear that. I would recommend keeping her diet VERY simple to start--

Breakfast: eggs. rice cereal. grits. Cottage cheese with yogurt stirred in (I also love apple sauce or blueberries or chopped fresh tomatoes in my cottage cheese). YOu can get gluten-free bread at the health food store, and gluten-free bread mixes that are easy to make in a bread machine.

Lunch: Dinty Moore beef stew and chicken n' rice bowl--these don't even have to be refridgerated, and she or her kids or husband can heat them up in the microwave for her. Some Progresso canned soups are gluten-free. Rice cakes with peanut butter on them. Cheese. Fruit. Nuts. Hard boiled eggs. Amy's brand makes a frozen cheese pizza with a rice crust that's pretty good (we add pepperoni to ours)--I find this at Fry's (Kroger's) and at the health food store. Corn tortillas with refried beans.

Dinner: broiled chicken or salmon with a bit of olive oil, salt and pepper. Many Amy's frozen entrees are gluten-free, like the black bean enchiladas and the brown rice and black eye pea bowl--again, these are total convenience foods, and easy to do in the microwave. We love omeletes, split pea soup, tacos made with corn tortillas and filled with refried beans/cheese/salsa at our house.

Snacks: Cheetos, Frito corn chips, tortilla chips and salsa, Lara bars, Bliss bars, rice crackers (get these at the health food store), Baby Ruth bars, Snickers, Hershy bar (milk chocolate or dark chocolate or with almonds--NOT THE COOKIE AND CREAM BAR), Reeses, string cheese, dried fruit, gummi fruit snacks, meringue cookies. Several flavors of Zone Bars (available at any grocery store, WalMart, Target) are gluten-free--I like the Fudge Grahm, Chocolate Almond Raisin and Chocolate Coconut Crunch.

She can live on easy food like this, brought to her by her family and neighbors until she gets strong enough to start reading and learning about it herself and eventually takes control of her own diet.

It is worrisome, how sick it sounds like she is. I wish her a speedy recovery--Good luck.

Susanna

[daffadilly]

Has she had a complete blood work up to check for vitamin levels etc? I would say to mail her some B12 - she should take a B12 everyday, this is very important, she might even need to get B12 shots...

Most of us are low on B12 - & some dangerously low.

Even if we test at the acceptable level - it is too low, Take a B12 everyday.

you will not overdose taking a multi with b12 & a B12...

[sunshinen]

If she is resisting starting, when she has been told that is the key to getting better, she is still in denial, depression, or just doesn't believe that this really is the answer. So you will have to deal with the psychological issues first. Talk to her. Let her express why she doesn't want to do this. Validate her emotions. On the practical side, I would suggest that her husband remove all gluten containing products from the house so that she doesn't have to weed through things and when she goes to eat, she can have whatever is there. But it might be best to get her agreement that she needs to do this first. She probably feels very out of control to begin with, so it might help to actually give her small things that she can do to see that she does have some say in her life. For many of us, by the time we find out what the real problem is, we have been told over and over that our intuition is wrong, that we don't know what we're talking about when it comes to our own bodies, and we lose confidence in ourselves. On top of that, failed diagnosis after failed diagnosis makes us begin to believe that there is nothing that will make us feel better, and she may think this is just another solution that won't work. Being sick can make you feel very helpless, not just physically, but as if the whole world is beyond your control. Hopefully she will be one the lucky ones who feels better very quickly and can see that she does have the power to feel better. But the first step is to get past the denial, depression, or given up mentality that is making her resist starting the diet. And simply being sympathetic and understanding, without enabling her to think it's okay if she keeps poisoning herself, is probably the best thing you can do. Sending things that will make the transition easier helps, both practically and as a show of support. You could also send some goodies from Kinnikinnick and have them deliver straight to her house.

[sunshinen]

I would encourage the whole family to go gluten free while at the house. If she is this sick, she will need their support, and hopefully they are willing to give it 100%.

An exercise that might help is to send a red marker and the list of gluten-containing ingredients. Encourage the family to go through the cupboards together, highlighting the ingredients that are bad on the packages. This will help everyone learn the list of bad ingredients. If she cannot participate, maybe they can do it where she can at least hear them going over the ingredients, so 1.) the kids can see that she is taking part in getting better; and 2.) so she can be involved even if she is unable to actively participate.

If they are not willing to toss a bunch of food (hopefully take most to a food bank), they can put a big red X on the packaging of gluten-containing items so that it is clear what she cannot eat.

[tiredofdoctors]

My long distance friend Karen sent me cake mixes, brownie mixes, alfredo sauce and chicken soup base that I can't get here . . . .

My long distance friend Armetta sent me Tinkyada (sp?) pasta -- lots of it!!!!

Also, you could send her the newest GIG lists -- they have two now, split into Foods, etc. and Medicines.

[ARK]

My long distance friend Karen sent me cake mixes, brownie mixes, alfredo sauce and chicken soup base that I can't get here . . . .

My long distance friend Armetta sent me Tinkyada (sp?) pasta -- lots of it!!!!

Also, you could send her the newest GIG lists -- they have two now, split into Foods, etc. and Medicines.

So far, I have sent her some mixes and pasta.

Just found out she eats cornflakes every day so I need to get some of those sent to her as well. I ordered some for my son from Amazon, so maybe I should wait and see how they taste first....

I talked to and emailed her husband and he is going to see to it that no more gluten enters the house, but as far as new recipes go, she will have to figure them out. He can cook the old recipes (minus gluten) but has such a busy schedule that he doesnt feel he could figure out a new recipe.

She is finally ready to go gluten free!!!! YAY!!

So, now I am sending her my weekly menu plan, and also today will get a notebook in the mail for her with all sorts of info. Some stuff her hubby can take when he goes shopping - safe ingredients list, etc.

She is really worried about having the whole family go gluten free because the kids are likely to put up a fuss that she wont be able to deal with because she is so sick.

The kids are ADDICTED to bread, sugar, and weiners, and such. I am sure they will be MUCH healthier after going gluten free too! I am going to call and talk to the kids today and give them that pep talk about helping out their mama with NO complaining!

Yes, her vitamin levels and such are really low, like my son. She is on IV's and supplements, etc.

Thanks to you ALL SO MUCH!!!

ARK