Congratulations on finding out what is wrong. Congratulations on your engagement too.
The first place you should start is the Newbie 101 thread in the coping section. Read it and take notes so you will remember it. Be sure to click on all the links provided too.
Yes, it is going to change your life - for the better! You will no longer be sick. And remember, it could have been something much worse. Just think, you don't need surgery. You don't need medication. All you have to do is stick to your diet.
And while I won't say it is easy at first, it DOES become easy as time goes on. It is something most of us don't even think about anymore. Once you have learned to read labels it's a piece of cake (gluten-free cake of course.)
And this is such a great time to become gluten-free. There is a new law in the US that stipulates that anything labeled gluten-free must actually BE gluten-free. And there are lots of products that don't carry the gluten-free label that still are gluten-free.
Wheat, in the US MUST be declared on labels. Rye is pretty much only in rye bread and some crackers. Barley is the only gluten grain that MIGHT be hidden in things like malt, but usually companies will say "malt from barley" because barley is expensive and they like to crow about expensive ingredients.
The other thing you need to watch out for is oats. While they aren't gluten grains, they usually are contaminated (because of shared equipment) so unless they say "certified gluten-free", it's best to avoid them.
Cross-contamination is something you need to watch out for. There is no law stating that companies have to tell us if a product is made in the same facility or on the same equipment as wheat products, but there are some companies who always will. Kraft, Unilever, Con-Agra, and Nestles are some. You can read the labels on any of their products and if you don't see wheat, rye, barley, oats, or made on shared equipment on any of them, you can eat the with confidence. And believe me, Kraft and Con-Agra in particular are parent companies encompasing so many brands your choices will be almost limitless. (For example, Kraft makes Planter's nuts. Con-Agra makes Marie Calendar's. And SO SO SO many more.)
Now, getting down to it - please don't bake gluten foods for others. Flour dust gets into the air where you will breathe it in. It will get into the back of your throat and you will swallow it. Not only that but it stays in the air for hours and will settle on everything. You can bake gluten-free things and you and others will find them delicious. There are loads of gluten-free baking mixes out there and there is a great cookbook by America's Test Kitchen called "How can it be gluten-free". Lot's of folks here have it and rave about the recipes. You can also check the recipe section here as well as the what's for breakfast/lunch/dinner threads for more ideas.
OK, now a word about gluten withdrawal. It's not just psychological, it's physical. Expect headaches, mood swings, and ravenous hunger for the first two or three weeks. But when you come through the other side you will start REALLY feeling great.
You will probably have a meltdown or two at the grocery store at first. I think just about all of us have had that experience. But keep in mind that whole foods - fresh meats, veggies, and fruit, are naturally gluten-free. No labels to read. Just plain wholesome food. Not only will you become more healthy by getting gluten out of your diet, but you will be eating better in general and it does make a difference.
OK, you may also want to cut the dairy out of your diet for a few months. Not everyone with celiac has trouble with it but many do. You can substitute with almond milk and there are dairy free margerines and cheeses available too.
It's a good idea to avoid restaurants at first. Even if they have a gluten-free menu, they can mess things up. I have a couple that I trust, but for the most part I only eat what I cook for myself. I still socialize with friends though. Of we are meeting at a restaurant, I eat first and just get a beverage. We still have fun.
Now- a warning about bread. Do NOT try Ener-G bread! It is vile and nasty! Instead, when you're ready for gluten-free bread, get some Udi's Whole Grain (similar in taste and texture to french bread) or Canyon Bakehouse 7-grain (similar to those multi-grain breads in the grocery store that have all those nutty bits in them). If you can't find them, Schar multi-grain isn't too bad either. If you can't find them in stores, you can get them online.
Wow. I've just typed a book here and I know it's a lot to take in, but just try to keep in mind that if so many of us here can do it, you can too. Now go read that newbie thread, take notes, then come back and ask questions. When you need to rant and cry, we will be here for you. When you need encouragement, we will be here for you. And I PROMISE, even though it looks like the end of the world right now, you will someday (soon) find it easy as gluten-free pie!
Actually there are PLENTY of processed products that are gluten-free. For example, I just had some Progressso soup that is gluten-free. Lay's potato chips are gluten-free. Most ice creams are gluten-free. Lot's of sausage brands are gluten-free. Reeses peanut butter cups (the regular ones, not the holiday ones) and hershey kisses are gluten-free. There are TONS of things.
There are several companies such as Kraft, Unilever, Con-Agra, and Nestles that will clearly state on the label if there are gluten ingredients. They will also declare if their products are made on the same line or in the same facility as gluten foods. All you need to look for on their labels are wheat, rye, barley or oats. If you don't see them, you can eat them.
It's true that whole foods are better for anyone (celiac or not), but you don't necessarily have to give up all of your old favorites.
Send her here and have her read as much as she can. When she sees how serious celiac can be, and even more importantly (to her), when she sees how easy the diet becomes for many of us and how much better we all feel, maybe she will decide to get strict with her diet.
No, you will probably never get her to get tested. I know because she sounds like me - no insurance, no money, and I too avoid doctors like the plague. But I am extremely strict with my diet and I feel so much better. Show her that list of the 300 possible symptoms and she will probably see she has things she never imagined were even symptoms, and that with a strict gluten-free diet they will go away.
"You should give your body a few months to actually heal before trying those "gluten free" labeled items off the shelf. They can leave a 100% gluten free facility and then be cross contaminated during shipping, handling, and shelving in the stores."
Sunny, according to that statement, ANYTHING can be cross-contaminated during shipping, handling, and selving in the store. If a product is wrapped that is very unlikely. Fresh fruits and vegetables on the other hand are not wrapped. But we wash them before eating them whether we are gluten-free or not so we aren't eating dirt and pesticides, so those aren't a problem either.
It's a good idea (again, whether we are gluten-free or not) to wash the tops of cans before we open them so we don't get possible flour dust, regular dust, or germs in our food.
The 20 PPM or less standard for gluten-free labeling does not mean there are 20PPM. It says, "OR LESS". Some things have NO PPM. But most celiacs can tolerate 20 PPM or less so that is the standard they use. Things that have the CERTIFIED gluten-free label are often tested down to 5 or 10 PPM, but because they ARE tested, they are perfectly safe. You don't even need to read the ingredients on them.
One other thing Veronica, once you start eating processed foods again that DON'T have a gluten-free label, it is vital that you read every label, every time. Companies change ingredients often depending on price and availability. Something you bought last week that didn't contain gluten might contain it this week.
In the USA, they can no longer put "gluten-free" on the label unless it IS gluten-free. However, they are not required to test their products in order to call it gluten-free. MOST companies who put gluten-free on the label should be safe, but under the new law, they are only required to test if someone complains.
The products you see that say "Certified gluten-free" HAVE been tested and are safe for us to eat.
Companies are not required to state whether or not their products are made in the same facility or on the same line as gluten containing products. Some companies do though - Kraft, Unilever, Nestle, Con-Agra, General Mills, and probably some others. Planter's nuts for example, are a Kraft product and although the label doesn't say gluten-free, if you read the ingredients and don't see a gluten ingredient or "processed in the same facility/line...", you will know they are safe. (I eat them all the time.)
So that opens up lots of possibilities for you. In the US, wheat MUST be labeled, rye is mostly only found in rye bread, so the only thing you have to watch out for is barley (things like malt). Also, oats, unless they are certified gluten-free are almost always contaminated. And there are some celiacs who can't even tolerate certified gluten-free oats because the protein (the part we react to) is so similar to gluten.
Now, all that being said, you should stick to whole foods at first. Meats, rice, potatoes, fruits, veggies and nuts. It's hard to digest foods when your gut is damaged and these things will be easier for you. Shop the outside aisles where whole foods are more likely to be found. The fewer ingredients in a food, the better.
gluten-free substitutes are full of calories and have very little nutrition. They are also very expensive. There ARE some decent tasting breads out there, but save them for later. First of all, you will have time to heal, and second of all, you will "forget" what regular bread tastes like and they will be more palatable. Do not, I repeat, Do NOT try Ener-G bread. It is the nastiest, vilest tasting thing ever invented! When the time comes for you to buy bread try Udi's multi-grain or Canyon Bakehouse Seven Grain.
Now, go to the coping section and read the Newbie 101 thread to learn LOT'S, then come on back with any questions.
Yes, if it is "certified gluten-free", it has been tested. There are lots of companies with shared facilities who test their gluten-free products and get certified. I've never, ever gotten sick from anything with the gluten-free certified label.
As the OP said, she is not sure if the breadcrumbs are what made her child sick. As a new poster here perhaps her child is new to gluten-free. If she still has damage to her gut she could have been sickened by just about anything. When we first start lots of different foods can make us feel ill - things with too much spice, acidic foods, things with too much fiber, and others. That doesn't mean she was glutened.
I also read that Tietze often comes back. Sounds like your doctor is right on with the diagnosis.
I can't take NSAIDS either so I take Tylenol. And I take grapeseed extract. It is an anti-inflammatory that has done wonders for me. I get mine at Shopko. If there is no Shopko near you check at a health food store. You can either check with your doctor or look it up online to see if there are any other meds you take that it may interfere with.
I'm thinking that if you just started with separate butter when your daughter got sick, you may still not be completely gluten-free. All containers of "stuff" like mayo, peanut butter, etc. have to be dedicated to the gluten-free eaters in the house. If you haven't already, go to the coping section here and read the Newbie 101 thread for more ideas.
How about kisses? If a gluten eater doesn't brush well before kissing you you can get glutened. And pet foods can be a problem. Not only do they (most of them) contain gluten that you will breathe in when you pour them into the dish, but your pet is now a source of glutening. Doggy kisses are just as dangerous as people kisses, and kittys may be even worse because they clean themselves with their gluteny tongues. Pet the cat and then pop something into your mouth without washing your hands first, and you are potentially glutening yourself.
As someone mentioned, medications and supplements should all be checked for gluten. Eating out is usually dangerous unless it is a totally gluten-free restaurant. And don't forget to read EVERY label, EVERY time you buy something. Formulas change depending on price and availability of ingredients. I have actually seen it when I buy two of something. It was an ice cream that I used to buy. One container from last week's shipment was as usual, but the second container was from a new shipment and it now contained guar gum. Now guar gum is not a gluten ingredient but it COULD have been. See what I mean?
I humbly suggest you elope. You'll save the money you would have spent and you'll save the hassle of food. But if you do decide to do the 50 people wedding, seeing it's going to be at a cabin in the woods how about chili with cornbread, a huge salad, and a gluten-free wedding cake? If you ask others to bring something you KNOW there will be CC at best or downright gluten ingredients at worst.
To save money you could even make the chili a vegetarian type. But even if you decide to put meat in it you won't need that much.
Accidental glutenings don't have to happen. In the three and a half years I have been gluten-free I have only been glutened once and that was back at the beginning. I simply do not eat anything I didn't cook myself. I read every label every time when I go shopping. If I am unsure about an item I put it back. I live alone and cook in bulk so there is always something in the freezer I can grab for a quick meal. If I am going somewhere I plan ahead so I don't have to worry about food.
Suggestion: forget about EnerG. Just about everyone here agrees that is the nastiest tasting bread out there. It even smells bad.
Against the Grain is another company that makes great stuff. Not good for those who can't have dairy but perfect for those who can't have grains. And what I love about that company is it is a completely gluten-free facility - to the point that employees are not even allowed to bring gluten foods for their own lunch.
Also, there is a cookbook (fairly new I believe) called "I can't believe it's gluten-free" or something like that. (Hey everybody, you know the one I'm talking about so chime in and correct me because I think I have the name wrong.)
It sounds like it is very possible that you do have celiac. Could I make a suggestion? Drop ALL dairy for at least six months. The lactaid may help with the lactose portion of dairy but there is also casein in dairy. If your villi are damaged from celiac they can't digest dairy. And there is both milk protein concentrate and whey protein concentrate in that Cheez Wiz. That's a lot of concentrated dairy right there.