I'm New At This

[Miss Teri]

Hello, I'm not sure how this all works as I am new to the whole message board thing. I just found out that I have Celiac Disease. I'm still not sure what to think, except that now that I know the symptoms it seems that I have the majority of them from the tummy issues to the neurological ones. I have trouble with sleep, lots of aches and pains and just about everything else you can think of. I had lung cancer, they removed my right lung. I have been cancer free since and hope to stay that way. It's amazing what an allergy or intolerance can do to the body. Well anyway I thought I'd give this a try. Any advice or info would be appreciated.

Thank you,

Miss Teri

[psawyer]

Welcome to the board, Teri.

There is a lot of information here on the discussion board, and also on the parent site, celiac.com. The board is a huge mutual support group. Whatever your question is, it is likely that somebody here knows the answer.

Celiac disease has many, many symptoms and everyone is different. Neurological symptoms are something I didn't have, so I can't really comment, but I'm sure others will.

[GFinDC]

Hi Terri,

It's great that you found out about the celiac. Many people feel better after starting the gluten free diet. It may take some time though, as healing time varies for people. There quite a few threads that discuss the vitamins and supplements you might want to consider adding to your diet while you are healing. D and B vitamins for instance. And you might want to try removing dairy for a while if you are having GI tract symptoms. Some people don't have GI symptoms though.

You can use the search feature on the window top right to find threads. The my assistant link will take you to a page where you can click a link to bring up a list of your last 10 posts.

It can take a while to learn the diet. Some people switch to all home cooked, non processed foods. That way you don't have to spend a lot of time reading labels on packages and identifying safe ingredients You can also avoid a lot of preservatives that way.

Put on your learning cap 'cause there is a lot of info on this board!

[Miss Teri]

Hi Terri,

It's great that you found out about the celiac. Many people feel better after starting the gluten free diet. It may take some time though, as healing time varies for people. There quite a few threads that discuss the vitamins and supplements you might want to consider adding to your diet while you are healing. D and B vitamins for instance. And you might want to try removing dairy for a while if you are having GI tract symptoms. Some people don't have GI symptoms though.

You can use the search feature on the window top right to find threads. The my assistant link will take you to a page where you can click a link to bring up a list of your last 10 posts.

It can take a while to learn the diet. Some people switch to all home cooked, non processed foods. That way you don't have to spend a lot of time reading labels on packages and identifying safe ingredients You can also avoid a lot of preservatives that way.

Put on your learning cap 'cause there is a lot of info on this board!

Oh my, I guess that I really do have a lot to learn. I have been reading a lot of the posts on here and there is so much useful info. Everyone seems to be very supportive. Misery loves company and its nice to know that I'm not alone. I don't know where to start with the diet. I haven't gone shopping yet and am not sure where to get gluten free food items. I live in a small town in Central California and we have no health food stores nearby. Any suggestions as to what type of stuff to buy from a regular grocery store? Should I start with stuff from the Asian section, maybe? I am assuming that I will probably prepare most of my meals from scratch, since that seems to be the safer way to go. The problem is that I hardly have any energy so its hard for me to even get up and prepare a meal. My husband has been doing most of the food prep since I had my lung surgery and chemo. I have had problems with my stomach hurting and digestive problems and bloating since I can remember and I am 47 years old. I imagine that my intestines are trashed. It will most likely be a while before I am completely healed. Hopefully not too long though. I havent been able to eat very much since Thanksgiving last year. I've lost almost 50 lbs since then.I was eating crackers and bread and cinnamon rolls and couldn't seem to keep anything down. I finally saw a gastroenterologist and he did and EGD and colonoscopy. That is how we discovered that I have Celiacs, (from the biopsy). Now at least I know why nothing was staying down! The stuff that I was eating was the worst things in the world to be eating when one has Celiacs. Sorry about the rambling. Thank you for the support and the info you are giving me. It is all greatly appreciated. I am so glad I found you all.

[Takala]

Central California- Find a Raley's / Belair grocery store and they will have a big health foods/ alternative foods/ gluten free aisle.

I take it you're nowhere near a Whole Foods.

Even if you don't have one of those nearby, you might have a Superwalmart with some gluten free items as the nearest Big Store, altho that very size would be problematic if you are sending an emissary to do the shopping.

Regular Grocery store shopping :

See if the have LUNDBERG rice cakes, not Quaker. Lundberg is the safe gluten free brand. Rice cakes may be crumbled and used as gluten-free rice crispy type cereal, too. Mission Corn tortillas are also gluten free. Be CAREFUL of other brands which may have gluten. Rice Chex cereal, READ THE BOX LABEL, is also now making boxes specifically marked "gluten free."

Plain RICE is gluten free. Rice can be your go- to grain staple until you get this figured out.

Potatoes, real ones, are also gluten free. That's another starch staple.

Beans, dried, are gluten free. That's another staple starch. If canned plain beans bother you, RINSE them of their gooey starchy coating first and they will digest better.

So far, just in a regular grocery, we have as wonderful gluten free foods:

Rice products and plain rice

Corn Tortillas

Potatoes

Beans

If you are lucky, the pasta aisle might also have rice pasta. Tinkyada is the good brand. Or the Thai aisle will have rice noodles.

California- you're in luck. LOTS of bulk almonds, cheap, high calorie, gluten free, if you don't have a nut allergy, can be a real staple.

I grind nuts in the blender to make my own almond meal for baking gluten free, cheaper, fresher. I can whip up a quick nut and sorghum based bread faster than most people can drive to the corner store for a loaf of regular.

Avocados, loads of fat, nutrition, gluten free.

Olive Oil, real.

Real mayonaise, from Best Foods, is gluten free. Read the labels.

Arrowhead Mills peanut butter is pricey but gluten free. KEEP OTHER PEOPLE OUT OF YOUR PEANUT BUTTER UNLESS THEY ARE ALSO GLUTEN FREE SAVVY AND WON'T CONTAMINATE IT.

Notice how I'm listing a lot of high fat foods, commonly found in regular groceries, these, oddly enough, should be more easily digestible than yucky old tapioca bread, and help you gain weight and feel full, and they're good for your skin.

In a regular grocery, you can also usually find tapioca flour that is gluten free, and sometimes there will be a few bags of specific premixes for baked goods, such as Bob's Red Mill flours. Or bags of gluten free rice flour.

What you really might do the easiest with, for starters, is a bag of Pamela's gluten free all purpose baking mix, which you can mail order and use for almost everything.

There is a lot of controversy on the super - sensitive vs. the less sensitive celiac and some of us who are just, technically "gluten intolerant"- and what sort of things we consider safe for ourselves to eat, and individual reactions. Some people are a lot more trusting of manufactured processed food that might have highly refined ingredients that could have been made from wheat, than others are. I tend to be more on the suspicious side because I have in the past eaten things that were supposed to be "safe" and yet they were making me feel low grade SICK all the time, and the only way I found out was to read another anecdote here from another person who was also reacting to this supposedly "safe" foodstuff. EVERY TIME it's turned out that the manufacturer has changed formulas and was now using something that was "supposed" to be a safe ingredient, but it obviously IS NOT.

When in doubt, TRUST YOUR OWN PHYSICAL REACTION OVER WHAT ANYONE ELSE TELLS YOU.

Milk- you may be temporarily milk intolerant, as well, or just not able to handle lactose. This could go away. See the brand of yogurt with that cow on it, marked "gluten free." That one works.

Organic hard cheeses work. The longer a cheese ages, the less lactose it has in it.

At the Raley's, there is a brand of imported cheese from Ireland, Dairygold, where they don't put all that crud in the cheese, which is not marked "organic," but it may as well be, because I can eat it and don't react to it. I also eat "cultured" organic butter instead of regular butter.

Coconut OIL in jars- another great butter substitute.

Coconut milk in cans. Great in coffee and tea, and the organic kinds are gluten free.

THAI KITCHEN brand coconut milk, also, rice noodle boxes, READ THE LABELS, that may be gluten free.

Alternative gluten-free boxed milk products:

You may want to stay away from soymilk, until you know if that also sets you off, because soy can depress thyroid in susceptable individuals. Try nut milks, hemp milks, or rice milks. READ THE LABELS on the boxes. Don't use "Soy Dream" because they are a brand that uses a miniscule amount of barley during the processing, and yet they label their soy milk gluten free, but some people have reacted to it. This is what I mean about eating something that could make one feel sick that is "technically" gluten free. It's miserable.

Lunch meat. Hormel and Buddig make lunch meats that are marked "gluten free" that are found in many regular grocery aisles. Canadian bacon is frequently found to be labeled "gluten free." Tuna in pouches (read the labels) can be found to be gluten-free, as the pouched salmon.

Regular good old fruits, vegetables, and eggs are all gluten free.

Classico spaghetti sauces, read the labels, a lot of them are gluten free. If you cannot find a gluten-free tomato sauce, a big can of tomato puree mixed with a small can of tomato paste (READ THE LABEL ON THE PASTE, USE PLAIN PASTE THAT SAYS "tomatoes" ) with some basil and oregano thrown into it works just as well.

Salad dressing. Whoaaaa, expensive, confusing sometimes.

Real apple cider vinegar, made of apples, is gluten free and much safer to eat plus it can be used in so many baking recipes to make the dough behave a bit better.

Olive oil and vinegar, plain, or with salt and pepper, a little sweetener, or ketchup and/or mayonaise added, can be used for salad dressings. Some real balsamic vinegars also work.

Heinz ketchup is gluten free.

Lemon juice and olive oil also makes great dressing.

Soups:

Imagine and Pacific brands boxed soups, many are labeled gluten free.

Cosmetics:

Check your lipstick and lip gloss, and when in doubt, throw it out. That's the main thing, don't eat your gluten accidently in your lipstick. Ecco Bella, some Revlon, (call the maker) and Burt's Bees have been safe lip brands for some types of lip products, some people use pure mineral cosmetic powders. Some people also do better with gluten-free shampoos and lotions. Ivory soap and Dove soap is safe (so far). Apple cider vinegar mixed in water makes a wonderful hair rinse and coconut oil, tiny amounts make a wonderful moisturizer.

This should get you started. Remember, don't fear the "good fats" because your trashed gut right now may be able to handle them much better than a grain carbohydrate.

[one more mile]

Please just keep asking questions also. There is a lot to learn but after awhile it gets second nature. Have your own toaster and butter container. Other people my accidentally get crumbs in your butter. Easiest way to do that is just to take a black sharpy and write"gluten-free" all over your container. I put my toaster away in a cabinet so that others do not use it.

When I am out and need something to eat I head to Boston Market or wendy's for a baked potato. I also keep some food in my car.

I started by first eating only a few foods then slowly started adding things. That helped me to find other foods that made me ill.

Good luck, we are here for you!

[happygirl]

Terri,

Welcome to the board - I'm happy you've joined us. Hopefully you can find some info here that will help your transition.

Great info to get you started

Open Original Shared Link

Label Reading

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

National Support Groups and Branches

Gluten Intolerance Group (GIG) www.gluten.net Open Original Shared Link

Celiac Disease Foundation www.celiac.org Open Original Shared Link

Celiac Sprue Association www Open Original Shared Link