Just diagnosed - GFDF and OVERWHELMED!!

mom2cgj

DIS Veteran
Joined
Aug 9, 2012
Messages
520
So, after months and months of trying to figure out why I've been so sick, and doing allergy tests (ouch!), my dr. finally tells me I'm both lactose and gluten intolerant. I've been sitting here looking at recipes, reading "guides", and just generally getting completely and totally overwhelmed. It also doesn't help that I have a seafood allergy, and DH can't eat poultry because of Crohn's Disease. Although, sometimes I do cook chicken for me and the kids and fish for him (I can cook it if I wear gloves). I know there are some great people here who have dealt with this (I've read some of your TR's!), so I'm hoping you can help, or at least convince me that life can still be somewhat normal. Any advice on meal planning, especially with kids, would be great.
 
Initial diagnosis is difficult and the first few months may be stressful but it DOES get easier! Focus on the foods you CAN eat, and indulge in those for now while you get the rest of the menu figured out. Upon my own allergy diagnosis, I ate homemade chocolate pie for two days because it was a comfort food and I knew it was safe! Salads, stir fries, and other simple foods are good places to start. Beware of soups, as some stocks contain gluten, but after that, soup is a pretty good option too. Cooking from scratch takes time but it can help build the confidence of knowing what is in your food, as gluten and dairy creep up everywhere in processed foods, spices, sauces, etc.

I don't have kids but work with them daily. Kids are incredible and will amaze you with their compassion and creative ideas. Let them know that some foods will make you sick and have them create meals that work for everyone. You may be making Namaste pancake mix with fun toppings for a few nights in a row, but the kids may have some really wonderful ideas.

Other products that may interest you:
Tinkyada pasta (yum, and it comes in fun kid shapes!)
Libre Naturals (oats, granola bars, trail mixes, seeds, chocolate)
Namaste (baking mixes even gluten-eaters like myself enjoy)
Enjoy Life Foods (cookies, cereals, chocolates, etc.)
Dr. Lucy's cookies
Daiya cheese (dairy-free)
Bob's Red Mill (gluten-free flours and mixes)

Get to your local library and borrow a few books on cooking for your allergy set. Dreena Burton has a few cookbooks with fantastic recipes, many of which can be made gluten-free. There are many more allergy-aware cookbooks out there!

Take a deep breath and keep moving forward. :)
 
We feel your pain. My husband has multiple allergies (gluten, soy, pork, wide variety of fruits and vegetables). My daughter has dairy and soy problems. And I love to cook (even now though it is harder). It is unbelievably depressing, especially at first.

Keep in mind that the allergist tests are basically showing you have a reaction to the foods, not necessarily that they are making you sick. If we gave up everything my husband tested positive for, we'd eat virtually nothing but chicken and rice. Go off of everything you tested positive for for at least a month. Then you can try adding back small amounts of an item for a week and see if it impacts you. For example, we have found that trace soy and wheat are ok. So we don't have to worry about the "made on equipment used with wheat" warnings or some of the trace gluten in broths.that makes a huge difference. My daughter has problems with dairy but can eat some cheeses. Again, it's a bigger impact than you'd think. It is worth experimenting with if your dr thinks it is appropriate.

Gluten free pastas are pretty easy to find now and are pretty good. Trader Joes even has corn pasta for pretty cheap. We like it better than rice pasta. That puts most italian foods back on the table (literally).

Mexican foods (if you use corn tortillas) lend themselves well to GF and doing without cheese isn't too bad. Guacamole helps a lot.

We also really love our middle eastern cookbook. Lots of good rice and chicken recipes that work well with family.

Eating out is probably the biggest lifestyle change. When you are dealing with multiple allergies, eating out becomes very stressful. So you need to find other things to do as a couple or family. That was a lifestyle change.

I also recommend cookbooks by Analise Roberts. She has some of the best gluten free baking options I've found. I'm guessing most would work ok with soy or almond milk.

Good luck and you will survive this!
 
Something I found helpful- my son can't have eggs or dairy and I found it much easier to come up with ideas that didn't include them if I sort of worked backwards from what comes naturally. I looked up vegan foods, then added in meats he could have. Right now gluten free vegan is sort of a trend. It might be fun to look up gluten free vegan foods, then you could add eggs and meats you can have.

On the plus side, gluten and dairy seem to commonly bother the same people so many (not all, but many) gluten free specialty foods are made dairy free by demand anyways. If you are looking for a non-dairy milk, we are loving the almond/coconut blends right now.

You know what we talk about wanting around here that you could have? Quiche. Quiches did not used to have cheese, they were sort of like a "stuff pie" with egg as a binder. You just need a gluten free pie crust (easier than you would think) eggs and some stuff floating in the egg.
 

Down the road, it may be worth figuring out if you can have dairy if you take lactaid or lactaid milk, etc. There may be amounts of lactose you can handle (some people can handle hard cheeses, baked goods, and other products without problems), but it's worth removing it completely until you feel better and then trialing different things.

You might want to check out some paleo diet cookbooks, as well. They cut out more than you need to cut out, but definitely won't contain gluten or lactose. If the protein in a recipe you're interested in doesn't work for your family, you could try substituting one in that you all can have instead. I wouldn't necessarily say "go paleo", but it's another option for finding cookbooks that will already have the things you need eliminated.

Keep in mind, by the way, that lactose intolerance is not the same as a milk allergy. If something is labeled as having casein specifically (without other milk/lactose), it shouldn't cause problems.
 
Thank you, everyone! I started looking at recipes last night, and plan an exploratory trip to the grocery this morning. Unfortunately, we don't have anything like a Trader Joes or Whole Foods around here, so I'm hoping I can find things at our local chain grocery. They do have a pretty good Health Market, so I'm sure I can find some things.

I'm trying to stay positive. We've said for years we need to cut back on eating out, so this will be a good reason to actually do it. Plus more fruits and veggies and less carbs *should* help with weight loss (I would think), so that's a plus. It means giving up some of my favorites at least until I get things figured out, but maybe it will be fun to try new things.

I appreciate the support. It is so scary setting out on this alone, so I'm glad to know I have somewhere I can come and ask questions!!
 
Yes, life can be somewhat normal :thumbsup2
We are in the same boat, but we have 10+ years experience, so it's all easy at this point.
For starting out, I would focus on all the great foods you CAN have
Meats
Veggies
Fruits
Rice and other gluten free grains
Eggs/Beans
Our first meals were pork or chicken roasts with salads and sweet potatoes or mashed potatoes and we expanded from there. The first thing I would advise cooking is a pancake, because they are pretty easy to make. I'd start with an all purpose mix. I have tons of recipes in my siggy link. So many yummy choices now a days!
AND Disney does a FANTASTIC job serving you like royalty with allergies. Truly not a problem and you'll so enjoy it :)
After 2 months, the initial overwhelming feeling will be a distant memory and it gets easier and easier from there.
 
gluten free living has become a lot easier in the past couple of years as a lot of companies like betty crocker cake mixes, barilla pasta, ronzoni pasta started making gluten free products that can be purchased at regular grocery stores. as far as disney you should be fine dd has celiac and we have traveled to disney once a year for the past 12 years. she never had any problems with getting sick at any of the restaurants
 
I remember when I was diagnosed. It seemed way harder than it actually is. Of course I would love to just not worry about things and grab a regular slice of pizza, but I don't miss it that much. Considering it seems as though going GF is a bit of a fad diet for non-celiacs at the moment, there have become a TON of options for us, both at home and out. Most things we make/I eat you couldn't even tell they were GF. You will be fine, especially in Disney.
 
My local Walmart has a decent gluten free section - a store with a specific section might make shopping easier for you until you learn the ropes and code words and can spot all the gluten free foods lurking in the regular food aisles. Stay far away from "modified food starch" unless you know it's not wheat/barley etc. You may also want to steer clear of oats for a while. You may find that you tolerate dairy better once your digestive system recovers from the gluten. Though even after almost two years GF I still can't eat a yogurt on an empty stomach. Stick with whole foods for a bit - fruits and veggies, beans, rice. Quinoa is a fantastic and versatile protein/grain that you can serve hot or cold like a bulgar wheat/couscous. Some GF pastas are better than others - buy a variety and see what tastes best to you. It's hard at first but so worth it a few weeks down the road when you realize that bloat is actually NOT your normal state of being, that headaches don't have to be an every day thing, etc. GF is the only "diet" I have ever stuck with. Losing a few pounds never motivated me. Feeling 10 years younger - helluva motivator.
 
My husband has Celiac's and I feel your pain on the testing. It took us an unbelievable three years to find a doctor who would do the test to diagnose it - probably our fault because we usually led the appointment with telling the new doctor we thought my DH had Celiac's. They would all tell us not to diagnose and run a battery of different tests instead. Everything from Crohn's to cancer to a bacteria from drinking water in Colorado. Crazy - we were so relieved when someone was finally willing to listen and run the silly test proving we had been right all along.

Try searching the internet for products. Amazon has an amazing selection of GF products. My favorite flour is Cup 4 Cup. It was developed by Thomas Keller, the chef from the French Laundry restaurant in Napa. It is expensive, but I find that it is the closest thing in texture and taste to traditional flour. Gilt.com sometimes features it at a discount, but only on their website, not on the app.

Good Luck and do not get disheartened. Once you determine what your base products are you will be amazed at how easy cooking will be. I do not even bother with GF cookbooks anymore, because with the products I use I can convert any recipe into a GF, one. The only thing he misses that we cannot find a sub for is poboy bread (we live in South Louisiana, and poboys were a mainstay of his pre-GF diet) and saltines.
 
I have Celiac disease and found I have an intolerance to diary and soy. If he carries the medical dx of Celiac your doctor can give him a referral to see a dietician that can help give him the in's and out's of all the hidden areas you find gluten on labels of food in your local store and help start on a diet with foods he does like so he can expand from there. My dietician encouraged me to seek food in local supermarket as my speciality stores want double for the same or comparable foods.

I have a local Publix which marks there price tags with a green lettering GF. I shop in the same sections example pasta looking for my GF sticker and often find certain companies make product very friendly to our new lifestyle. Some family friendly brands are orida (frozen ff/tator tots), hormel products to name just a few.So to keep simple I eat everything before I found out but with alittle tweek such as... cook/drink lactaid milk very good, bread swithed to Udi bread/ begals in freezer section.

The dietician said often people with with Celiac who have been ill for awhile will normaly have a dairy intolerance and after 6 months of complete gf your gut has time to heal and may be able to add back in some dairy, also small amounts of cheese / sour cream/ cream cheese / yogurt... cause it is aged can not be a problem. Those don't bother me as much as a product made from milk/ milk powder or drinking regular milk.

So you need to find where your intolerance effects you. If you find a brand you like in your local market such as Betty Crocker, Pillibury, bisqick gf mix they have great gf recipes online for things you loved to eat pre- gf days. I have two kids and we try to fix one meal at dinner time. Sometimes my meal may needs a little change such as I get my bread everyone else eats there bread.

I thought this was a death sentence with all the crazy new info, but you will find Celiacs before us have paved the way so there are more products offered and more awarness so it will be so much easier for us to shop and eat out.

You can always pm me, I would be willing to share any other info I have stumbled across or web apps if I'm looking for a type of product (gf overflow- great app google play store or online). Good luck
 
Plan a loooooong trip to the grocery when it is least crowded. You need to go in and just start reading labels to see what foods you can and cannot eat. Luckily most items will say *contains wheat and dairy but be cautious that gluten is more than wheat so you have to dig further to look for barley, rye etc. This takes time and if you plan ahead it won't be as Frustrating. Produce and meat are very easy since it is almost all gluten free. (I'm not lactose intolerant so I can't give tips there). Find out what gluten free bread options they have. I like Udi's brand the best but be prepared for a significant change in taste and texture when switching to gluten free bread. If you don't like the first loaf you buy, try another. They are all quite different. Hopefully you will have several pasta options and the Barilla one is awesome! Our grocer just started carrying it. You should also find gluten free flour and mixes for this like pizza dough, bread, muffins, pie crusts, cakes, brownies etc. I try to buy these when they are on sale since they are pricey and keep a stock at home.

Depending on your grocer, things may be confined to the health food area or may be intermingled throughout the store. In my case they just recently started intermingling. After your first trip you should have a better idea of what you like and where to find it. Knowing the basics help when you just need a quick dinner some night and have nothing at home. Again, I am not lactose free but I would think the better selection of lactose free things would be at a health food store. I don't notice too many at our grocer.

Also, once you have been eating gluten and lactose free for a while you may want to check back on your lactose allergy. It's not uncommon that the gluten allergy cause a lactose allergy when not managed. Once your stomach villi grow back you may be able to digest lactose just fine.
 














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