I Have Been Diagnosed, Now What Do I Do With My Family?

[Kimmy1119]

So, I was diagnosed with Celiac Spru this week. The reality has set in that my family and I are facing a huge change in our lifestyle. How do you all handle this with a spouse and children? I have to cook meals for us all, but at the same time I have to think about what I can and cannot have. Should the whole family go gluten free? Would that be bad for my children? Does anyone have any recommendations on gluten free products/stores/restaurants? Any advice is appreciated!

Thanks!

[mushroom]

So, I was diagnosed with Celiac Spru this week. The reality has set in that my family and I are facing a huge change in our lifestyle. How do you all handle this with a spouse and children? I have to cook meals for us all, but at the same time I have to think about what I can and cannot have. Should the whole family go gluten free? Would that be bad for my children? Does anyone have any recommendations on gluten free products/stores/restaurants? Any advice is appreciated!

Thanks!

Well, the first thing to do, since celiac is hereditary, is to have your children tested, and you should keep testing them every year or two. They may or may not develop if even if you have passed on the gene to them.

Have you discussed this with your spouse? Many households decide to go gluten free to keep the celiac safe, and those without celiac can eat gluten outside the home. This avoids all the risks of cross-contamination that go with having gluten food in the house. It would also help your children learn how to eat gluten free because the chances are at least one of them may have to during their lifetime. It would not do any harm whatsoever to your children so long as you made sure that they took a multivitamin to make up for some of the things we normally get from grains, although if you choose high nutrient non-gluten grains such as buckwheat, sorghum, amaranth, millet, quinoa, you can get good nutrition (B vitamins) and protein from those. It is much easier on you since you would not have to handle gluten foods and wash your hands constantly and there would not be gluten on door handles and knobs and all over the kitchen counter. I don't know how old your chldren are, but if they are toddler age they will be hard to train to keep you safe. So this is the first decision you have to make.

I would not recommend eating out at first at all. It will take you a while to learn how to eat gluten free before navigating the restaurant minefields. You want to be really sure of what you are doing before ordering food out and confident in knowing how to deal with restaurant managers, chefs and waitpersons, in my opinion.

There is so much to read on this forum on how to live gluten free, how to find gluten in your personal care products, what to throw out or buy new for non-gluten use in the kitchen. Read through the Coping section and you will find so many threads there on how to do this.

[SarahJimMarcy]

Welcome, Kimmy 1119! We are only about 8 weeks ahead of you. While my daughter has celiac for sure, my husband and I both tested negative. However, we all decided to go gluten free. Though I tested negative, I feel a ton better and daily stomach aches are a thing of the past. My daughter's migraines, rashes and abdominal pain have subsided.

It's overwhelming at first. What I've found is that here in Minnesota, the grocery stores rank as Whole Foods having the most selection with the best signing. Fresh and Natural is second. SuperTarget is third. Trader Joe's has very little that is truly gluten free; lots of cross contamination issues with their food.

I bring the list of foods to avoid to the grocery store (I think the list is from this site) and I call the customer service numbers on the food packaging if I have questions about specific ingredients, like "natural flavors" or "carmel color". We've also moved to lots more whole foods - fruits and veggies.

I also checked out a lot of library books about celiac and gluten free cooking and baking.

You'l start to feel so much better that it will all be worth it. It is a lot of work and takes a lot of diligence, but there is a positive trade off!

[domesticactivist]

Welcome. I second the advice to get the kids tested!

As for how to start - in our family we decided to all go gluten-free, at least at home. That really simplified things. Then, once we learned more, we decided to go truly 100% gluten-free as a family and took it a few steps further with the GAPS diet to help restore our gut health. It is possible to maintain a gluten-free diet for just one member of the household, but it didn't make sense for us.

Since you are the one who cooks for the rest of them, I think it's very important that you stop preparing foods with gluten in them. If your family decides to continue eating gluten, it needs to be kept far away from you, and you need your own, dedicated, utensils.

Getting started is a big process. It took our family a couple months to really figure out what we were doing. Now we're starting a business helping other people adjust to dietary changes.

Depending on where you are, sourcing food will be different. We have the luxury of living someplace with a lot of options, and we now source all of our milk, meat and most of our fruits and vegetables from local, organic farmers. We also are part of an Azure Standard drop. They have most of the things you'd find at a Whole Foods, at lower prices.

The best thing you can do right now is READ!!! The forums here and The Gut and Psychology Syndrome book have been two of the best resources for me.

As for food choices, the best quick advice I have is to avoid processed alternative products that attempt to mimic or replace things you used to eat. Your gut needs to heal and find a new balance of flora. Processed foods and alternative grains will not help. Organic, fresh meats and cooked vegetables, and home-fermented foods will.

[Korwyn]

Our whole house went gluten-free/CF/SF. (gluten-free, casein-free, soy-free). It helped (I guess) that my wife later (several months) got tested for some other food intolerances and she has a number of other food issues - the only ones we have in common are casein and soy. But where it will get interesting will be when you find out if you become more sensitive to the effects of gluten. It is not at all uncommon to become even more sensitive over time. For some this fades somewhat, for others (like me) you wind up as a 'super-sensitive'. My personal suggestion after trying to keep a mixed gluten/gluten-free household for a few months was that the stress of it became almost intolerable. Especially when I kept getting cross-contamination from old Tupperware, cutting boards, pans, etc. It took quite some time but finally we went entirely gluten-free and cleaned out the entire household. I don't even let our grandkids bring snacks over anymore. I got glutened one time from formula that our daughter spilled on the counter. They wiped it up with a dishcloth, but they didn't get out a new dishcloth. I used that dishcloth later to wipe down a cutting board that I prepped a pork roast on. I was was in the bathroom all evening.

Also, I want to second everything that domesticactivist said. She is right in line with what I've found over the last couple of years. One of the easiest home fermented foods to make that is WONDERFULLY healthy is homemade sauerkraut. Cabbage, sea salt, a carrot or two if you like, and a stainless steel pot. Plus it goes awesome with pulled pork or spareribs.

[Korwyn]

Additionally you might look around for a CSA (community farm). Buying a share or portion of a share can help ease some of the financial strain if you have a family that has been living on the traditional western processed food diet. You normally get 26-35 weeks of various veggies delivered/picked up once a week during the growing season and for the average family that doesn't eat out a lot it usually works out to about one month's grocery budget. If you ate out a lot it probably works out to about 1/2 a month's grocery budget.

[domesticactivist]

Yes! Oh, and we have a 4 part series chronicling how to make homemade sauerkraut on our blog. We've learned lots from the book Wild Fermentation!

[Kimmy1119]

WOW! Thanks for this wonderful information! I do worry about my son and realize how smart it would be to have them both tested. I realized last night that we have eaten nothing but whole foods for the past week! That was exciting! And, you are right about eating out... We are not going to take that on anytime soon. I gotta figure out the grocery thing first! My only issue right now is that my hubby (wonderful though he is) doesn't realize the severity of the disease. Thankfully, he wants to go with my to the nutritionalist so that he can become as educated as me. Thanks again for all of your wonderful input! Lots of food for thought! (no pun intended)

[Kimmy1119]

Welcome, Kimmy 1119! We are only about 8 weeks ahead of you. While my daughter has celiac for sure, my husband and I both tested negative. However, we all decided to go gluten free. Though I tested negative, I feel a ton better and daily stomach aches are a thing of the past. My daughter's migraines, rashes and abdominal pain have subsided.

It's overwhelming at first. What I've found is that here in Minnesota, the grocery stores rank as Whole Foods having the most selection with the best signing. Fresh and Natural is second. SuperTarget is third. Trader Joe's has very little that is truly gluten free; lots of cross contamination issues with their food.

I bring the list of foods to avoid to the grocery store (I think the list is from this site) and I call the customer service numbers on the food packaging if I have questions about specific ingredients, like "natural flavors" or "carmel color". We've also moved to lots more whole foods - fruits and veggies.

I also checked out a lot of library books about celiac and gluten free cooking and baking.

You'l start to feel so much better that it will all be worth it. It is a lot of work and takes a lot of diligence, but there is a positive trade off!

Love the idea of bring the list of foods to avoid... I will be doing that!

[Jungle]

As the chief cook in our house I am also the celiac. I prepare one dinner that is gluten-free (I sometimes make both gluten-free and wheat pasta on special occasions) Breakfast is usually toast or cereal that the kids prepare themselves so they have gluten then, and lunch is usually simple and the rest of the family has gluten then.

If I bake or make a cooked breakfast I make it gluten-free Why would I go through the effort if I can't enjoy it.

I have just had my 3 kids tested and am waiting for results. If the whole house goes gluten-free you won't know if your kids are Celiac as well.

[Takala]

Re Cross Contamination:

Paper Towels Are Your New Very Best Friends.

Also ziplock plastic bags in small and large, with a permanent sharpie marker.

For example, new wooden cutting board gets labeled gluten-free prominently for the memory challenged.

Any food leftovers that are safe get labeled the same way. We have a gluten free house and anything that goes into storage I still automatically label it "gluten-free." Ditto if something cc'd me it gets the Big "X" of Doom marked on it immediately on its own bag. This way it can still be taken to work or given to somebody else if it's okay otherwise, like sometimes people will try to gift us with things we can't eat.