Celiac Disease

[SVG]

Hello everyone, I'm looking for any information I can get on living with celiac disease. My husband was just DX with it yesterday, he still has to have the blood assay's done, but that will happen within the next week.

I am an RN and I had to run, not walk to find out exactly what Celiac Disease is. I am floored to note the number of diet limitations associated with it, and I know that my DH is not very happy. We went through the pantry today, it is apparent that there is nothing appropriate to his diagnosis.

I don't even know where to start. Steak and Salad is what he got today. Oil and Vinegar dressing. Where does one get information on how to shop.

At some point I hope to get him into see a dietitian, but at this time it looks like its gonna be awhile.

Thanking you in advance for anything you can tell me. SVG

[mouse]

Welcome to the board. It really is not that hard once you get the hang of it. It is just getting there. There is a topic on this forum for shopping and also one for recipes. I just spent about 8 hours or more yesterday finally putting all the fantastic recipes I have gotten (from this forum) into a loose leaf binder with index cards. I have been printing the ones I like for almost a year. Be sure you do not use a shared toaster for your husband's bread. Make sure there is no cross contamination of condiments. Watch that anything that gets on his hands is gluten-free. Some people touch their mouths and face with their hands and you can get sick. Also his toothpaste must be gluten-free. I am the Celiac in this family and I cook only gluten-free. There is no regular flour in here. I bake and cook all gluten-free as it is so much easier that way. My husband has his own condiments and bread. He also has his own toaster and he uses a specific area of the kitchen to make his sandwiches. We found out the hard way that the least little crumb can make me sick. He also has his own kitchen towel. You really will find that this is not that hard. In the beginning it seems overwhelming, but there are now many main stream items in a regular grocery store that are gluten-free. Others will post more info on shopping.

Oh, you will probably find out that most (but not all) dieticians have no clue on how to eat for this. In the beginning, everyone pretty much suggests that you go as natural as possible so that you give your small intestine time to heal.

[ArtGirl]

It is rather overwhelming at first, but it gets easier as you learn more. Actually, regular cooking for meals isn't much different gluten-free. Meat, vegetables, potatoes, rice..... they are all naturally gluten-free (just don't add wheat flour). Fruit makes for nice desserts and they are gluten free. It's the breads that are more of a challenge, but there are many gluten-free bread/roll/cake/brownie mixes you can get at a health food store or on-line.

Take some time to read up on living the gluten-free life here on this board and you and hour husband will be experts in no time. when I found this forum a few months ago I spent every free moment for three weeks reading posts and collecting recipes. It was like taking a mini-course. Didn't need a dietitian after that (actually, from what others say about it, they learned more here than from any professional).

Ditto about keeping gluten area separate from the rest of the kitchen. There are several spouses here that have voluntarily gone gluten-free so that their home is safe for their celiac family member(s). That is so sweet. (My husband is careful, but not so willing to go without his bread and turnovers.)

[cowrdlyon]

Welcome to both you and your husband...I felt the same way you did when I was diagnosed 3 weeks ago. I immediately hit the Whole Foods store locally as well as Trader Joes and the Health foods section at Stop &Shop. I was amazed the amount of foods that I found!!! Food shopping now takes longer because my wife and I now have to read every label but it's worth it. I feel so much better. My wife is a psychiatric nurse and she did the same thing you did....got all the information she could from the medical doc's she works with. It has been quite an adjustment and she is doing the gluten free thing with me. If you don't have a Whole Foods or Trader Joes near you...just hop on line and you can get pretty complete listings of all the gluten free foods and products they carry and if I remember correctly....I think you can even shop on line. Feel free to contact me if I can help in any way...Hang in there!!

[GFBetsy]

My first suggestion is to sit down and make a list of all the things you already eat that are gluten free. That way you don't end up eating steak and potatoes every single night .

For great dinner recipes, check out the cookbook "Saving Dinner" by Leanne Ely. I believe she also has a website at Open Original Shared Link. She doesn't TRY to make her recipes gluten free, but a lot of them just end up that way naturally. Her garlic lime chicken recipe is SPLENDID.

I've also got a lot of great recipes online, but I don't want to break board rules by promoting my own site. If you'd like the web address, just send me a Personal Message (by clicking on the PM under my name on this post).

[kabowman]

Welcome - it gets better. A few things not mentioned yet are: if you use teflon, get new - gluten will stick in the scratches, ditto for wooden utensils. Basically anything that is porous should be changed out. Cast iron skillet, we keep separate ones, mine and theirs, actually we have some theirs teflon too.

Clean, clean, and clean - I also use a separate towel and we have a dedicated sponge for handwashing those speciality pots & pans, etc.

I keep my condiments and food on its own shelf in the 'fridge to avoid any confusion - I also have my own pantry but before we got this house, I had my own cabinet for my foods.

So much food is naturally gluten-free, we have eggs and homemade sausage for breakfast and most of my lunches are leftover dinners. We make sure to fix plenty so I can take food for lunches throughout the week.

When you get ready to eat out, call the local resturaunt first. I have had good luck with Chili's, Texas, Cheesburger in Paradise, and a few local places.

[CarlaB]

Everyone has had good suggestions so far! I eliminated the dish towel -- we use paper towels instead. Yea, we go through a ton of them, but I don't get sick!

Meat, chicken, fish, eggs, fruit, veggies, potatoes, and rice are all naturally gluten-free. You can add herbs, olive oil, coconut oil, etc. for flavor.

I make salad dressing out of olive oil, lemon juice, gluten-free mustard, maple syrup, garlic, and salt (I don't measure--I use garlic, salt and mustard sparingly, but I'm pretty free with the other ingredients). I make it in the bottom of my salad bowl, then toss the salad in it. Kraft products are clearly labeled on whether they have gluten, so you can read the bottle of your favorite dressings to see if they're safe.

So, now you have the basics. You can look for gluten-free products at the grocery and health food store to replace his favorites. You'll be pleasantly surprised at how many are available! But remember, he's going to heal the fastest eating all natural, whole foods like those listed above.

I hate to say, but chances are that by the time you see a dietician, you will already know more about gluten-free than he/she does!

[TCA]

Open Original Shared Link

I started this thread a while back to help newly diagnosed folks. Hope it's helpful!

[luvs2eat]

Like everyone's said... it seems daunting at first. All you can see is what you CAN'T eat, when there really are so many things that you can. It turns out what we can eat is REAL food... meats, fruits, veggies. And the rest of the stuff comes later... there are great mixes for breads and cookbooks for baking.

You'll most likely find way more info here on the forums than even a dietician can give you. By the time I got to one, she told me I should teach HER.

Good luck and come back. There are the most knowledgable folks here!!

[Nooner]

Welcome SVG! I'm also new, gluten free for about 1 month, and it does get easier. Just read TCA's link, very helpful, thanks TCA!

You will find lots of great info on this site. If it weren't for these great people, I wouldn't have a clue where to begin.

~Li

[Ursa Major]

I would like to add that almost all newly diagnosed people with celiac disease are also dairy intolerant, at least for a few months. So, if your husband won't improve fairly quickly, or regresses after a while, keep dairy in mind and eliminate it. It is the rare person with celiac disease who doesn't have other intolerances as well, especially in the beginning.

Also, you need to watch out for gluten in personal care items, like shampoo, conditioner, soap, shaving cream, lip balm (even your own lipstick, if you kiss your husband ), toothpaste and lotions. The most common items to look for are wheat germ oil, barley extract and oat bran I think. Vitamin E can also be made from wheat germ oil (call the manufacturer to find out).

Has your husband had a bone density scan done? That is very important, as even very young people with celiac disease may already have osteoporosis or osteopenia (the pre-cursor to osteoporosis), and it's important to know.

[hineini]

Welcome!

I was just diagnosed, but I've been gluten-free (gluten-free) for 2 months now.... Before that I ate no wheat on and off for a few years while, but was never strict about gluten.

One thing that I found very helpful, was to go to amazon .com and put in "Gluten Free" in the search bar, it comes up with all kinds of grocery products that are gluten-free... and it helped remind me of how much I could still eat.

THere are a number of books about eating gluten-free on amazon .com, as well.

GlutenFreeMall.com is a great place to go to see some of the many products available to celiacs. There are a number of online stores designed just for people who can't eat gluten, and it's a blessing to be able to shop where I know nothing will "poison" me.

I shop a lot at local healthfood stores, Whole Foods, Trader Joes... But most of the food I eat comes from a regular produce market or grocery store. As you spend time researching it, or just hanging out on this board, you'll discover there's lots more he can eat than you think!

For instance, many of the dishes I've always loved are typically gluten-free or can easily be made gluten-free: risotto, steak and potatoes, many Passover recipes (I'm Jewish), most (though not all) macaroons, Van's gluten-free toaster waffles I've always preferred to the wheat kind, all kinds of Thai and Vietnamese dishes made with rice noodles and spring rolls made w/rice paper, salads, cheese, most chocolate bars that I like, certain flavors of Doritos, various soups and rice dishes, much Mexican food (tacos, tamales, rice and beans). That's not to mention all the gluten-free versions of various bread products are available on the market.

The things I've discovered lately are how much soy sauce (which is typically made with wheat, although you can buy soy sauce that isn't) is hidden in everything... and how much easier it is to cook at home than to eat out.

I know it's overwhelming at first, but you will likely find that both of you end up eating healthier and feeling better!

[VegasCeliacBuckeye]

1. Read Gluten Free for Dummies by Dana Korn -- it will speed up the learning curve.

2. Mentally reject anything you thought may or may not have wheat/gluten in it - things you think do not end up having it -- you need to re-learn and re-think about every thing he eats

3. Search this website for any questions you might have, if you can't find it, ask away - someone here will know it

4. Websites to know -- www.glutensolutions.com www.kinnikinnick.com www.glutino.com (These should help)

5. when all else fails, he can have a burger no bun, plain chicken breast, plain steak, plain pork chops, most veggies and most fruits.

Hope this helps,

Bronco

[mamaw]

Hello & welcome

I think everyone's post is helpful to you. You will learn more here than any other place. There are some educated celiacs on this site, actually knowing more than most doctors.....

Wow, I just drew another blank but can someone post Nini's site for newly dx'd ? It has alot of info.

once you get started you will find there are some mainstream products you can use.

What got me sick at first was just licking an envelope, then the communion wafer.....

If you want to pm me I can tell you some of the better products out there. I hate for people to waste $$$$ on yucky tasting stuff.....

Let us know what part of the country & state you live because someone will be able to fill you in with where to shop....

At first when everything seems like a mountain , remember to go slowly. the best thing I can think of at first is when in doubt "eat naked"no breadings, no nothing just naked foods. And your alway safe with veggies & meats naked .....

blessings to you & hubby

mamaw

[Rusla]

Welcome to the board, you will find a wealth of information on here. When I first found out I was Celiac I was already on the board that was because there were strong suspicions that I had the disease. However, at first it seems like there is nothing that can be eaten and that is true in a lot of restaurants. But at home pasta can be replaced by rice noodle pastas and many other things can also. The flours we can use have to be refridgerated or they beomce rancid. Betty Hagman has some great cookbooks out and watch all shampoo's and skin creams. Many things have gluten in them. Things like soy sauce and hydrolyzied vegetable proteins. I cannot stress this enough, read all labels. Beware of anything made in a facility that has wheat or gluten products made there. We have tons of recipes on here and someone will always help.

[rumbles]

Welcome, SVG! My husband and I (double whammy!) just passed one year gluten-free, and it absolutely does get easier as time goes on! The first thing to accept is that there will be times where he is accidentally glutened, but those times become more and more infrequent as you both get accustomed to the diet, things to look for, and questions to ask (to manufacturers, restaurant management/waitstaff/chefs, etc.). The most important thing is that if you are not sure whether something has gluten in it or not, don't take the chance.

For my family, the one thing that made the learning curve and transition easier was to always keep a bowl of cubed fruit (watermelon, honeydew, canteloup, etc.) in the fridge, so when one of us got hungry, there was something that we could grab quickly, that to us was a tasty treat.

We just went to our first support group meeting, - it took us a year, and now I'm sorry that we didn't go right away, - there was a lot of information about what foods are available, what is safe, what isn't and how to adjust, plus it was good to meet others in person that have dealt with, or are learning how to deal with a gluten free lifestyle. There are a few different support groups such as the Gluten Intolerance Group, Celiac Sprue, etc. - there is a link at towards the bottom of the celiac.com main page that you might want to check out to see if there is a group in your area.

A couple books that I found invaluable during the last year are:

Dangerous Grains, by James Braley, M.D. and Ron Hoggan, M.A.

Celiac Disease A Hidden Epidemic, by Pter H.R. Green, M.D.

The Paleo Diet, by Loren Cordain, Ph.D

Celian Disease A Hidden Epidemic was published this year and may be available in your local bookstore. The other two are older and usually have to be ordered on line.

The celiac.com website has been a great help over the last year, for both knowledge in the articles posted, and in realizing that we're not alone in this challenge.

Markets such as Whole Foods, Wild Oats and local health food stores often have a fair selection of gluten free foods (and some have a list of gluten free products that you can pull down from their web sites, but you usually have to search for it), and more and more supermarkets are carrying gluten free items. Many supermarkets have lists available of their product brands that are gluten free, - you usually need to either call the corporate site or email them requesting that they mail the list to you. Most market lists will also identify items that are gluten free but may be cross contaminated because they are produced on the same line as gluten products (cross contamination is a big issue, as it takes a very small amount of gluten to cause an internal and often external reaction - I separate the two to keep the reminder and perspective that the internal reaction occurs first and some people will not experience an external reaction). (As an example, one of the supermarkets that I shop at lists their orange juice as potentially cross contaminated, - I took it out of my diet when I got their listing, which cleared up a reaction that I was going through. You really need to check everything that is ingested.)

If your husband has the dermititis herpetiformis form of celiac disease, his skin will probably be very sensitive and reactive to many things, including topical products (shampoo, etc.) that contain gluten, until he have been gluten free for at least a few months. While the polypeptide is too long to absorb through intact skin, until the gluten reaction has stopped and the skin reactions healed, many of us continue to experience DH type of reactions from topical gluten (and other products); in this case, it might be best to stop using all products (shampoo, laundry detergent, etc.) that contain gluten, and then possiblyn slowly reintroduce them at a later time if desired to see if the reaction returns.

One other area of potential concern, believe it or not, is the glue on envelopes, as it can contain gluten. Better to use a sponge or self-sealing envelopes. Gluten is used in many products, not just what we consider food.

Good luck to you and your husband, - welcome, and realize that this does get easier with time!

[chrissy]

i had several meltdowns when my girls were first diagnosed----but it really isn't as bad as it seems to you right now.

one of my girls recently spent several months in the hospital. i was concerned she was getting gluten. the dietician assured me that they had kids come through their hospital all the time with celiac and that they were ordering in things especially for her. before she left the hospital her TTg levels were over 100----they had only been at 10 when she went in. you'll probably know more about a celiac diet than a dietician in a very short period of time. you will be amazed in a few months at how "not hard" it really is. (notice i didn't say easy, just not hard)