New To Celiac

[jschooley]

Hello all. My name is Josh. I live in Delaware Ohio. I have been recently diagnosed with Celiac disease and am trying to learn how to cope.

Some history:

When I was 12 I started having violent "attacks" usually after I ate a meal. I would spend 30-45 in the bathroom in extreme pain. My parents took me to my doctor about it. He simply said "It's all in your head."

After that, my parents bought into his diadnosis, or lack therof. I dealt with it for a few years after that with the help of Pepto Bismal (The only thing available at the time)

When I was old enough to drive (16), I found a new doctor. I decided that I was going to deal with this anymore. He diagnosed me with IBS and prescribed medication, (Bentil).

The medication controlled the symptoms for about 5 more years. About a year after getting Married and having my first child, the symptoms got out of control. The medication didn't help anymore.

During that time I got VERY sick. I couldn't keep food in me, so was extremely malnurished. I lost 45 pounds and looked ill.

I went back to my doctor and told him "I can't take this anymore." He was immediately concerned and reffered me to a specialist. After seeing the specialist, he told me that I have severe IBS and to lay off the caffine. He prescibed a new medication called Diphenoxilate-Atopine. The medication worked wonderfully controlling the symptoms and I was able to continue a somewhat "Normal" life.

The time came when I ran out of pills. It was time for a checkup with my doctor before he would prescribe more, but he couldn't get me in for another month and wouldn't refill my perscription until I saw him. Needless to say, I found a new doctor. I went back to my pediatrician! After spending nearly 1 1/2 hours with me, he said that he did not agree with the previous two doctors and told me about Celiac disease.

I have now been diagnosed and don't know where to start from here. I am having trouble finding Gluten-free products and meals.. A lot of food manufactures use products that contain gluten as stablizers.

I really need some help dealing with this, and how to cope. Any comments, suggestions, etc... would be extremely helpful. Imodium AD has become my best friend and I would really like to NOT be dependant on it.

Thanks for any help!

[Jnkmnky]

Welcome to the board! Here are the foods my family eats and likes.

On-line

Kinnikinnick.com White tapicoa rice bread is great, donuts, bagels, pizza crusts..all are the best we've tried. Kinnikinnick has a great shipping policy - $10 flat fee, and a points program. You won't find better service, charges, and food.

Chebe.com It is a powder mix with the difficulty level of Bisquick. We take the pizza or Garlic flavored chebe and throw in chopped pepperoni, mozzerella, garlic salt, roll them into sticks and have "pizza sticks" with a side of spaghetti sauce. You can use the plain chebe as buns with soup or stew, we flatten out pieces and wrap them around hot dogs for "Corn dogs". We also roll out chebe and fill it with chopped ham, cheese, turkey, etc, etc, and pinch it closed for "Hot Pockets". Last night we added minced garlic that you buy in a container, salt, and mozzerella cheese.

In health food stores

Most here will tell you that Tinkyada pastas are the ONLY pastas worth buying. I agree. They taste exactly like gluten full pastas, don't crumble apart into mush, and aren't gritty. Just perfect. Envirokidz cereals, Broths for soups/stews, See if they carry Kinnikinnick products, if not-ask them to.

In regular shopping marts

Post Fruity and Cocoa Pebbles

Thai Kitchen products are all gluten free

Classico sauces, including the creamy Alfredo. all Classicos are gluten free

Oscar Mayer hot dogs/bologna

Corn burrito wraps *heat with a pat of butter on each side for just a few seconds to magically bring about the consistancy of a flour burrito!

Hormel salami

Old el Paso Taco sauces, etc. To make tacos we brown ground beef and pour the oepTaco sauce over the meat. No other mixes necessary!

Lays Stax potato chips

Lots of other chips, actually

Read labels at Deli counter, find meats that are gluten free and have clerk wipe down the slicer before placing your order. Cross contamination issues are real!

Uncle Ben's rice...brown rice is better for you, though.

Lots of cheeses are gluten free

yogurts are usually gluten free..as long as they're yogurt and not some sugar free, hyper low fat, fake fruit concoction. Stick with real foods now.

Cream cheese *again, just regular old cream cheese

Oscare mayer bacon

Lots of those big hams are gluten free

Meats

Veggies

There are tons of posts here at celiac.com full of even more foods you can eat. You will not go hungry on a gluten free diet. Do you or your wife enjoy cooking??? There's always soups and stews made from scratch. We use a soup starter called Pacific Brands. A healthfood store in your area may carry it or some other soup boullion that is gluten free to start your soups. There's beef stew, chicken soup, split pea w/ham .... so many options in the soup/stew arena....throw in some Chebe balls with butter and you're good to go!

[Jnkmnky]

Ohio

Chagrin Wild Oats Natural Marketplace

Cincinnati Wild Oats Natural Marketplace

Deerfield Wild Oats Natural Marketplace

Upper Arlington Wild Oats Natural Marketplace

Here are some Wild Oats stores in Ohio for you. If there's one close to you, you can call the store and ask for a tour of the gluten free products they offer. If you have the time, you can prepare to spend a couple of hours on your own investigaing the gluten free products they offer.

Bob's Red Mill Pancake flour

Sylvan Farms Pancake flour

Amy's gluten free frozen meals (not all Amy's are gluten-free. Look on front of pkg)

Tinkyada pastas

Gluten free cold cuts

cookies, crackers, pretzels

[jschooley]

Thank you so much! I just had NO IDEA where to start.

Will going on a gluten-free Free diet correct damage that is already done? I have a feeling there is a lot of damage in my body.

[KaitiUSA]

Yes, the gluten free diet will heal that damage that has been done. It varies from person to person on the time it takes for that to happen. Usually it is 3-6 months to heal damage(depending how much damage, age, etc)

Symptoms will also go away with time and that also varies. I saw alot of improvement after the 3rd month but I really was not normal again until 8 months.

BTW, welcome to the board. This is a great site filled with great people and info. You'll catch on to things in no time.

You should check out this safe and forbidden list. It will help you know what to look for and what ingredients gluten can be hidden under.

https://www.celiac.com/st_main.html?p_catid=12

Gluten is hidden under many things and even products like soaps and shampoos can contain gluten. So you just have to pretty much pick apart everything.

Also, on this site there are a list a mainstream brands that will clearly indicate gluten on their labels in the form of wheat,rye,barley,oats. For those brands it is safe unless one of those 4 ingredients is listed. It is on here in many different posts but if you can't find it or want me to post it on here for you or email it to you then just let me know.

[jenvan]

Josh-

Be encouraged--once you go gluten-free for a while, you shouldn't have to rely on the Immodium.

1st off I have to ask you if you go to the bowling alley in Delaware--can't remember the name right now, but my Aunt owns it

Okay, food... Below are two gluten-free food lists I use that are helpful. The first you can get for free, from another listserv--delphi. Directions are below. The second is a list you can purchase--it is palm pilot software. I like it and keep it in my palm and have it when I'm out, shopping etc. You may or may not be interested in that...

To get the Delphi Forum gluten-free Food List, Go thru the following:

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

You may need to register (the basic version is free) in which case, just register first, then complete the steps above.

To view the Clan Thompson gluten-free Food Palm Software, go here: Open Original Shared Link

Next, go here to read a list of manufacturers that will list any gluten ingredient on their ingredient statement. (This is what Kaiti mentioned. So, if its not there, it should be safe.

Open Original Shared Link

Go here to see an extensive list of gluten-free food vendor's websites: Open Original Shared Link Some of my favorites are www.Kinnikinnick.com (breads and baked goods), www.glutenfreepantry.com (mixes and skittle meals I like), www.food4celiacs.com (cool store out of milwaukee-tons of gluten-free food!).

Lastly, go here--this is a current post that might help you...similar question to yours. Good luck and welcome!

Open Original Shared Link

[pantrygirl]

Josh, I know how hard it is to deal with this diagnosis but you will succeed. (It is great that you caught it this early.) I had to change the way that I thought about food. Rather than try to find gluten-free versions of everything, go back to "square one" with meats, fish, vegetables and fruits (and there are so many of those!). Whether cooking at home or eating out, the food should be prepared as simply as possible. I rely on rice (lots of different kinds!) and potatoes as a carb and there are many ways to prepare them. I make gravies and sauces with cornstarch instead of flour. Salads are always a good idea and can be topped with grilled chicken in a spicy rub. (Spices purchased from health food stores are less expensive and do not have "flow agents" or preservatives.) Real cheese is great. Processed versions may contain colorants or 'food starch' that can cause problems. Use REAL maple syrup on gluten-free pancakes made with a mix. (I know of three.)

You will be able to expand your diet quickly. There are now lots of packaged foods that are gluten-free. There are many brands of gluten-free pasta so you can make pasta salads or fix a meal of stir-fried meat and veggies served on pasta or rice. You can have spaghetti! There are many gluten-free mixes for cookies, cakes and breads. If you don't want to bake, there are companies that make gluten-free cookies, breads, hamburger buns and English muffins. There are even gluten-free pizza crusts! A clerk at a local health food store should be able to provide brand names of gluten-free products (I have favorites but shouldn't list them here.)

When eating at family functions, I do an 'ingredient check' with the person who prepared the dish. If you don't want to do that, look for the natural ingredients (fruit salads, tossed salads, meats with no breading or sauce). You will always have to pay attention to how things are prepared outside your home so I follow these same rules in restaurants. At home, stock the pantry with gluten-free ingredients so you know what you cook will be safe. There are gluten-free salad dressings and mustards, mayonnaise, tamari, even gluten-free bread crumbs and lots of other ingredients. It may seem overwhelming at first but it gets easier over time and things WILL be normal again.

[zakismom]

I remember when I was first diagnosed I was so relieved to find out that it was not "all in my head." This is by far the best place to start, the people here know far more than most Drs. do and they will always offer their support.

This sites lists of gluten-free foods is also a great resource.

[amybeth]

Thank goodness, my doctors caught this RIGHT away -- I was diagnosed in April and went (and am still going) through the same feelings of What on Earth am I going to eat?

I agree -- Tinkyada Pastas are terrific. My non-gluten-free boyfriend even requests it at times........

After existing on tostitos and rice cakes for a while I am slowly branching out.....

In my limited experience, Amy's Organic Veggie Lasagna w/ rice pasta is something I can no longer live without.....Whip up a salad to go with, and dinner is ready in 7 minutes.

Good luck