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dacoontz

New Guy Here, Any Beginners Advice

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Hi there,

Just diagnosed with Celiac Sprue today after a endoscopy, colonscopy, small bowel study, and various lab tests (glad that part is over). So where to start. This is all somewhat overwhelming and my wife and I are a little lost on where to start. Any beginners advice? Thanks in advance for any help.

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Well, its easier said then done. You will have good days and bad days. Veggies can be your friend when you are in pain.

There are a lot of factors and i don't think i'm the best one to try to explain it :) i'll leave that to more experienced members, however, when in doubt about something, don't eat it (pertaining to something that has a general lable).

Welcome :)

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Well, its easier said then done. You will have good days and bad days. Veggies can be your friend when you are in pain.

There are a lot of factors and i don't think i'm the best one to try to explain it :) i'll leave that to more experienced members, however, when in doubt about something, don't eat it (pertaining to something that has a general lable).

Welcome :)

Hey, that's a start. I appreciate it.

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Read around on this site. Maybe the sites for the celiac centers at u of Chicago, Maryland & Columbia.

I liked Gluten free for dummies book.

Start your first week with the obvious stuff. Keep reading here to find out things like not using a toaster that is used for gluten bread.

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The good news is that you don't have to do it all at once. The first place to start is to decide if you are both going to eat gluten free for the convenience of it (your wife can eat gluten when she's out) or whether you are going to have a shared kitchen. If you are going to share are you going to cook your own food or is your wife going to cook gluten and non-gluten? If you are going to have a gluten free house (which is much the easiest option because of cross-contamination issues) the first thing to do is clean out the pantry and the refrigerator. Actually, you will have to do that either way and either throw out all the gluten stuff or give it away, or sort it onto gluten and gluten-free shelves. There, that is enough for today :D

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Great info so far. I guess a little spring cleaning is in store for this weekend. I think the gluten free for dummies is in order for sure. I have heard that Whole Foods has people there that will help sort of consult you for gluten free diets. Anyone tried that out?

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Just to share some newbie mistakes I made in the first 6 months.

If your wife wears lipstick...it can gluten you...she needs gluten free lipstick. I didn't believe this one.

If you kiss your wife after she eats gluten you can get sick. I didn't believe this one either. It's true.

Cross Contamination counts and there are thousands of ways to accidentally get it.

Drinking water from a water bottle a gluten eater drank out of.

I handed my sister's kids cookies and then ate my gluten free food. Yikes...glutened.

Using hand santizer does nothing to gluten except make sure the gluten that makes you sick is clean. Yes it's true.

If you decide to have a shared kitchen at least make sure all purpose flour is banned. If your wife does any baking it will hang in the air for 2 days...you breathe it in...it hits your mucous membranes and then your stomach...and you're glutened. Also it settles on everything and then you can gluten yourself just using the remote control. You will think it was something you ate...but maybe it was something you touched.

Soy sauce has gluten in it. There are some gluten free versions. But any restaurant that uses soy sauce is using the gluteny kind.

And the biggest lesson I've learned....You can get MORE sensitive to gluten with time...your reactions can be severe or mild.

These are the lessons I have learned the hard way.

Glad you found out what the problem is...and I hope you aren't like me and have to learn everything the hard way.

I was skeptical about cross contamination...I thought that wouldn't happen to me.

Oh yeah, and canned soups usually have gluten in them.

Welcome to our world. You will find a lot of information and support here. It has been wonderful for me and I hope it will be for you too.

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At first I just focused on things that were naturally gluten free. There are a lot of yummy things, like steak, potatoes and salad, or chicken, rice and veggies.

My kids still eat gluten so I still buy those things for them. I haven't bought any gluten free bread because of the cost so the toaster thing isn't an issue. I have found a lot of substitutes that work for me. When I want something sweet, instead of cookies I can have a chocolate bar or ice cream. When I want a sandwich I found I like rice cakes with mayo and lunch meat.

So far the only thing I am disappointed with is a gluten free pasta I bought.

It takes a bit of thought but really there are so many gluten free foods that I don't feel deprived.

It helps that for Mother's day, my daughter made me some gluten free cookies :) (she used a gluten free flour). They were very tasty.

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Thanks eatmeat4good. I am happy that my blood type is O+ because my body thrives on meat and I love that I don't have to compromise that. I do worry that recently with stress of a very sick child and more responsibility at work that my symptoms or senistivity to gluten may have increased. I will have to start paying attention to cross contamination and I have also needed an excuse to stop eating all fast food. I guess that will be easy to be convinced of at this point. Thanks again for all the sound beginner advice. I appreciate the rapid insight and look forward to learning from everyone here.

So if gluten is not cleaned away by hand sanitizer then how do you eliminate it, especially at public places like restaurants?

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You mention cookies and such. Can you simply substitute gluten free ingredients in place of standard ingredients in recipes that you like? Or do those recipes usually not translate well with gluten free ingredients?

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At my WF, the gluten-free thing consisted of someone showing me where the main gluten-free things are. They had recently had tastings o they told me which cookies were their favorites.

I have 2 teen boys & a hub. I am the only one gluten-free. They keep their bread, crackers, etc in one cabinet & use that counter space. Most food we make is really gluten-free. If it's just the 2 of you, it's easier to make most meals gluten-free. I might make or help the boys make regular pasta at 6:30 for their dinner and when hub comes home we eat the gluten-free pasta. If I am trying to make oth at once, I get one of the gluten eaters to tend their pasta. I fond it's too confusing to keep my gluten-free spoon out of theirs.

You don't have to do it all this weekend unless you or your wife are one of those Over achievers. :)

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Ha! yeah, no....baking with gluten free flours- It's not a direct substitution type thing.

It's more like a science experiment!

Read the recipe section if you think I'm kidding!

Um the one exception I have found is that one can sub all purpose gluten free flour for the Nestle Toll House cookie recipe.

And gluten is not eliminated by hand sanitizer, but it IS eliminated by good ole fashioned soap and water hand washing. You will be washing your hands a lot.

My son didn't believe me on that sanitzer rule. I've glutened myself that way too. Other's have too.

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I forgot to tell you the biggest help to me in the early weeks was learning of Udi's bread.

I read reviews and then did not waste any money on other kinds of bread. Lot's of people have done that experimentation for us. Udi's is good and some people say Rudi's is too, but I haven't tried that one.

I used a lot of Udi's in my early weeks. Now I don't do grains very much at all and only use Udi's for a treat now and then. You lose your taste for breads and sandwiches...at least I did.

Secondary sensitivities are the next thing to watch for. Soy, dairy, nightshades, corn, other grains, and fructose malabsorption. If you start feeling yucky a few weeks in, it could be secondary intolerances.

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You mention cookies and such. Can you simply substitute gluten free ingredients in place of standard ingredients in recipes that you like? Or do those recipes usually not translate well with gluten free ingredients?

When you start out doing some gluten free baking it is usually best to start with packaged mixes to get the feel of the doughs and batters you willl be making because they are unlike gluten. This will also help you to identify which gluten free flour tastes you like and dislike before you invest in several kinds of flour. Most people start out with Pamela's Baking Mix for waffles, pancakes, cookies.

P,S. Tinkyada makes good pasta.

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I've found that I can use any of my baking recipes as long as I use Bob's Red Mill Gluten-Free Flour and 2-4 teaspoons of xanthan gum.

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Don't forget that your first degree relatives need to be tested (parents, sibs, children). I tested positive after my youngest son was diagnosed.

I started with reading lots of books and food reviews. I hate wasting money and after tossing out two inedible Trader Joe's products (gluten-free rice tortillas and some kind of English muffin thing) I decided to read the reviews (amazon) first before trying new products.

Our silverware drawer (right under the counter where the toaster was) was full of crumbs - had to use the vacuum on it and run everything through the dishwasher.

Don't forget to check EVERYTHING in your medicine cabinet - including toothpaste. Make sure you have gluten-free things on hand for when you need them.

Don't assume anything. I was shocked to find out twizzlers had gluten. My chewing gum did too.

Also, we've been to lots of family events since going gluten-free and everyone is trying to be so nice by making gluten-free dishes to share. DO NOT EAT food prepared by someone else unless you are certain they have taken proper measures to avoid CC - which is really, really hard unless you have a relatively gluten-free kitchen. They mean well, but probably don't have clean equipment. This is the only times we have been "glutened" so far. It doesn't help to tell them in advance - they will still want to cook something for you. DON'T eat it just to be polite (my mistake). They will catch on soon enough.

Udi's bread (and muffins, bagels, etc.)

Ancient Grains Quinoa pasta

chocolate, lots of chocolate

Good luck, it gets easier. You will find that your diet is MUCH healthier . . .

Cara

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A lot of great information all ready in this thread so I will just say,, read and ask questions.

Welcome, as you can see , you and your wife will find a great amount of help and knowledge in these forums :)

edit to add;; and breath :P it does get easier :)

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everything the others have said...

also, the best thing that you can be eating now is whole foods that are naturally gluten free- fruits, veggies, meats . stay away from the processed gluten-free stuff for a while. even though they are gluten free you may still 'react' because your intestines aren't healed yet (i know i did).

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Thanks eatmeat4good. I am happy that my blood type is O+ because my body thrives

So if gluten is not cleaned away by hand sanitizer then how do you eliminate it, especially at public places like restaurants?

Like was said, soap and water is your best bet. This is because it is not actually destroying the gluten, but rather washing it away. Sterilizing destroys living things, but since gluten isn't alive, it doesn't have the same effect, if that makes sense? To actually destroy gluten is really hard. Think of how high the heat is to bake bread, because that's still not destroying the bad proteins, ya know? Another factor is that gluten can stick (think of cleaning pasta residue out from the collander - pain in the butt, yeah?), so anything that has gluten in it needs to be scoured out, especially in little crevices, to get all the gluten. And sometimes you just can't clean it all.

This is one of the reasons that restaurants can be a risk, because they always cook gluten and often don't scour off the grill, or use contaminated utensils during cooking, etc...

So, things that I've found out that helped me, or helped get my brain in the right place, and I wish I knew from the beginning.

- If you are trying to figure out how to stay safe and get a safe kitchen, think of gluten like raw meat, in a way. Separate cutting boards for raw meat, separate cutting boards for gluten and non-gluten (anything wooden, actually, including spoons). Wash your hands after touching raw meat, wash your hands after handling gluten. Wash all utensils that touch raw meat and all surfaces that you touched after touching meat, and same with gluten. It's not a bacteria problem, of course, so it can't multiply, but amounts of gluten smaller than the naked eye can see can be a problem, so the raw meat rule is usually a good one.

This also can help in situations that you might not even think of, like produce. I had my 'aw crud!' moment when I saw a little child eating a cookie in the grocery cart, pick up a piece of fruit with little gluten coated hands, and have mommy put the fruit back in the produce section. Made me remember that if I didn't pick the food from my own backyard, I don't know where it's been or what has touched it, and I should make sure I wash it with mild soap and water, too.

- It will get easier. Feels overwhelming at first, but it's really, really good to know that it DOES get easier. I think it's like having a new baby. Seems like you will never figure it out, get sleep, think of all the little things you're supposed to - but eventually it's part of your day to day routine and you just do it. Doesn't mean life isn't more of a challenge now, but it's a challenge that makes things better for you in the long run, and one that you can definitely meet.

- Eliminating dairy for a little while is probably a good idea. The tips of the villi are the parts that are damaged with celiac disease. These are also the parts of the body that make lactase to digest lactose. So most celiacs are a bit lactose intolerant until they are healed. It can slow down healing a little, too, if you are intolerant but still have dairy.

- Plain whole foods are a nice way to start off. Cheaper, simpler, and a lot less label reading in buying tomatoes and veggies to make a sauce than in hunting down a gluten-free tomato sauce. So whole veggies, fruits, meats, nuts, beans, seeds, etc... You'll want to check packages for everything, though - a lot of beans and nuts are processed in facilities that process wheat, so are a higher risk of gluten cross-contamination.

- Sadly, the assumption that everything can have gluten if it isn't the way nature first made it is a good one in the beginning. Read all labels, even for honey, raw meat, you name it. Companies add gluten to so many things you just go :blink: and wonder what they were thinking. celiac.com has a good list of gluten and gluten derived ingredients that you can print out and take to the store - that's really helpful in the beginning. There's also a place called Cecelia's markeplace that sells a guide to gluten-free grocery shopping - lists products by type, and then whether the company says it is gluten free or not. VERY helpful, if not perfect.

- Remember that any prepared food can touch gluten. The deli's meat slicer can be an issue, the meat counter can sometimes cut up raw meat next to the raw meat they are coating with gluten, the pre-cut fruit may be cut on a contaminated cutting board. Often these are safe, but basically, if you didn't make it yourself, you need to get used to thinking about what your food touched on the way to your grocery cart. :)

- If it goes in your mouth, it can cause trouble if it has gluten. The inhaled gluten mentioned is one I've had trouble with too. Also, if you ever get a little shampoo in your mouth while rinsing it off, that needs to be gluten free. if you ever chew on your nails or put your fingers in your mouth, lotion, nail polish, etc... needs to be gluten free. If you kiss skin - a baby's tummy, your spouse's neck - that needs to have gluten free lotion, powder, etc... as well. Flavored floss, toothpaste, all that good stuff too.

- any meds/vitamins need to be gluten free too, and sadly, most pharmacies are terrible at checking this. You'll want to give yourself plenty of time to fill a prescription, possibly a day or two, because the pharmacist will usually have to call the drug company to find out if a drug has gluten - it's not information the drug company is required to give, so it can be a pain to get. And you'll want to do it every time you get a refill, as ingredients can change, and pharmacies will often give you a different generic variety at different times that may not be safe.

- Something that is frustrating as heck, but good to be aware of: gluten free does not mean zero gluten. It's a legal term that defines how much gluten a product can have and still be considered 'gluten free.' In the USA, the law isn't even in effect yet to regulate how much this is, so many companies call their products gluten free without testing for gluten. Basically, it's good to know this because 1) if you eat a lot of gluten free goodies like gluten-free cakes, cookies, crackers, cereal...you can end up still getting more gluten than is good, kind of like having too many low cal foods can make you gain weight. It's also good to know because people have varying levels of sensitivity to gluten, so some of us react to the gluten levels in some of the gluten-free products. So just because a product says it's gluten free doesn't mean it's 100% safe. Safer than a product that ISN'T gluten-free, but it's not a perfect system, is all.

- I'd second the testing of close family. The disease can trigger at any time, with no symptoms that are recognized, so you probably want to get any of your children tested every few years for this, and any siblings or your parents, if they will agree to it. 1 in 22 folks closely related to a celiac will have this disease. My father was diagnosed, and we didn't do the testing. 9 years later, I got tested and came back positive, and then we tested - my daughter and brother came back positive too, and my son, it turns out, has symptoms that disappear on a gluten-free diet, even though his test was negative.

There's a site with a great list of symptoms, if you want to look and think of family members and how they're doing:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

Good luck, and here's hoping you feel well very soon!

shauna

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Thanks everyone for your insights. A particularly big thanks to Shauna for taking the time to share all the information that she did. I took me a few minutes to read so it must have taken you a few minutes to write. I appreciate it. Well, it looks like we have a lot to learn and a number of changes to make. I think my wife will likely get tested also since she has been lactose intolerant for years but she is actually rather sensitive to everything she seems to eat. I wouldn't be surprised if she turns out to have Celiac as well and then we find out that the lactose intolerance is only secondary.

I will take a look at the Menu section as we are already struggling to figure out what we are going to make for dinner.

I forget to mention that we have two little kids, 4 and 1 1/2 years old, so this will be a big challenge but I look forward for the push to live and eat healthier. I am choosing to look at this as a blessing that may actually prolong good health and many more years of life for me and my family. Things always happen for a reason in my opinion and I can only see positive results from this diagnosis. Thanks again everyone, take care, and God Bless.

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Your positive attitude will carry you and your family a long way :)

Incidentally, I was lactose intolerant for ten years before I discovered I was gluten intolerant too.

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