A few years ago my daughter and I learned that our skin problems where an auto-immune response to gluten/wheat. Since then, we've learned to live mostly normal lives. Here is a brain-dump of what we learned.
- Get rid of allergens in the house... cross contamination is so hard to find because of the delay between exposure and reaction. Throw out the mayo, throw out the peanut butter - the knife goes back in the jar after touching the bread. If someone just MUST have their wheat then completely separate the stuff across the room and make sure everyone washes their hands after.
1b. Some encironmental exposure can be good. This depends on your reactions. We noticed that I (working from home in my office) had much worse reactions than my daughter (some contact at school). Keep this in mind. Staying calm goes a long way, as those stress hormones can turn up the volume on your reactions. Relax. Breathe. Catching a whiff of your allergens, if you don't go into full anaphylaxis, can help keep those reactions dialed down.
NOTE: CROSS-CONTAMINATION: You will forget to wash your hands. You will forget that pasta is wheat (unless you buy it). Your family members will forget. Just because you can't see it doesn't mean the proteins aren't sitting there waiting. Remember that your reaction might take a few days between ingestion and problems, be kind to yourself - and don't blame anyone, just make sure everyone washes their hands and surfaces really well.
- Namaste. http://www.amazon.com/Namaste-Foods-Gluten-Perfect-48-Ounce/dp/B001SAXNE6 This company will save your butt - you can make almost everything you ever made before (cookies, cake, etc). and it tastes good.
Wheat Free, Gluten Free
Dairy, Corn, Soy, Potato, Casein & Nut Free
Dedicated Facility, made in the USA
All Natural, Kosher Certified
- "Modified Food Starch" - just stay away, you will likely get sick unless it specifically says "Modified Corn Starch" or whatever. AND LOOKOUT for SODAS! (Orange Creme, how I miss you so)
3b. Malt/Maltose/Malted - unless it says "Malted Corn" or something you ok with - another sneaky source. Check breakfast cereals particularly for this one.
"Made in a facility..." / "Made on Shared Equipment..."- you will likely get sick, it's your body - you get to deal with the consequences. roll the dice? or just don't.
Yup, you have to read EVERYTHING. If it isn't obvious or marked, it's not food.
Packing a lunch from now on - and here's the real kicker. That table at school your kid eats on? Covered in wheat, and your kid will react, especially once you are off the stuff - it comes faster and harder. My daughter wears evening gloves to school when her arms start reacting.
Luvs - the child is going to get upset, especially if very young. Imagine the delimma of eating birthday cake - but knowing your skin would bleed and burn later. I imagine a 4 year old can't comprehend the delay in reaction. Sometimes they're just going to eat it, and its just going to suck. Sometimes that burger is totally worth it, sometimes it isn't - we allow her to choose. Lots of love helps.
Nightshades (for the tomato/potato-averse) - also have to watch for peppers (bell, hot, paprika) of any kind (same family as tomato and potato).
Cooking. You only get to shop around the edges of the store now, and you're pretty much going to cook almost every meal. Eating out is like a game of craps. Learn to love your local hippie store.
Soy Sauce. Soy Sauce has wheat. Most Chinese food (that brown coloring) = wheat. Tamari is just soy, however. Read labels, I believe La Choy has a wheat-free soysauce. http://www.san-j.com/ San-j has a whole pile of great gluten free sauces.
Restaurants - tell your server, you'd be surprised who has a gluten free menu these days. The Magic words "I have a food allergy to wheat, can you please have your crew change gloves before preparing my food". Works best when you have a cute little girl and you say "My daughter will get sick..."
I CAN WALK ALL OVER DOWNTOWN CHICAGO AND HAVE A HARD TIME FINDING FOOD.
Travelling - hit up the gluten free menus for your favorite fast food and print them out to take with you... and if your kid has allergies, don't bring it into the car - eat inside, that to-go bag is covered in evil. Hardees and some other restaurants actually have precautions they take (and training)
French Fries - the magic words "Dedicated frier" - this means the only thing in the oil is fries, no wheat of any kind - again, Hardees (if you ask first) is your best damn friend.
An amazing loving understanding partner who learns how to make all the foods you love minus the allergens.
Oats. No gluten in oats, right? Wrong. They use the same truck to take the oats to the elevator that they JUST USED for the wheat. So if you want oats, you have to make sure they are CERTIFIED gluten free. And $8/pound, Is oatmeal THAT good? Your choice. This has improved over the last few years. Cheerios is now certified, as are many other cereals. READ THE LABEL.
TAX BREAKS! SORTA! Got a doctor's note and like to keep track of your expenses? The price difference between the medical necessity of allergen free alternatives and the normal purchase may be tax deductable: https://www.celiac.org/index.php?option=com_content&view=article&id=116&Itemid=207
You will no longer go to McDonalds, Dairy Queen, Long John Silvers', and quite a few other places. Taco Bell is a crapshoot.
Hardees/Carl's Junior generally has dedicated friers and can change their gloves to make your food (do the lo carb option and tell the manager you have food allergies).
Meatheads has wonderful allergen protocols, and makes great burgers