Aivah_Story_Gluten_Dairy_Casein_Allergy

Aivah's Story

Age 14 months Age 15 months

Aivah is my happy, energetic 3 year old granddaughter. She hasn't always been energetic - or happy. Not long ago, she was in pain, irritable, listless, miserable and very, very sick.

Aivah has a casein (dairy) and gluten allergy. The above photos are the same little girl. The only difference is 3 weeks on a strict casein-free & gluten-free diet. In the first picture, at age 14 months, she weighed 19 pounds. In the second picture, one month later, she weighed 20 pounds, 1 ounce. That's only a difference of one pound, one ounce. And 3 weeks on a diet that does NOT include the foods that make her very sick. She was one of the lucky ones - it took only a few months to discover what was wrong with her.

A little background -

I have had a casein allergy (dairy allergy) for 10 years. My daughter, Annie, developed a casein allergy during her last pregnancy with my granddaughter Aivah. During her pregnancy, she stuck to the dairy-free diet - most of the time. By taking Acidophilus, she was able to eat a little dairy without too much of a reaction. Since I was accustomed to cooking dairy-free, it was easy to teach my daughter to cook nutritious meals without dairy during her pregnancy. We discovered right from the start that Aivah also had a casein allergy. If Annie had eaten a food with some form of dairy in it, it would affect Aivah when she nursed. Aivah would get abdominal cramps, diarrhea and gas. (So you see, everything DOES pass from mother to baby through the breast milk.) Once again, it wasn't difficult to adjust her meals to be tasty and nutritious, yet casein-free. Life became more challenging when, at 11 months, Aivah developed a gluten allergy, in addition to her casein allergy. She was a very sick baby for many months before she was diagnosed with a gluten allergy. We were lucky that the cause of her pain and distress was discovered in a matter of months. Many children spend years suffering - sometimes into adulthood - before they are diagnosed with food allergies or intolerances.

The signs and symptoms of casein allergy were fairly easy to spot in Aivah. My daughter and I have years of experience with reactions to dairy! Unfortunately, the gluten allergy was more difficult to pinpoint. The fact that Aivah was only nine months old and couldn't tell us what, where or why she hurt made it more difficult. The symptoms of gluten allergy can mirror the symptoms of many other childhood illnesses and diseases. Her more obvious symptoms were abdominal cramps, liquid foul-smelling diarrhea, hours of screaming, headaches (yes, babies get headaches - she used to hit both sides of her head with her fists and scream for hours), red blotchy rashes over her entire body, high fever, hours of screaming - to name a few. (Did I mention HOURS OF SCREAMING?) After buckets and buckets of tears (Aivah's, her mom's and mine), numerous trips to the doctor, blood tests, allergy tests, doses of penicillin (we also discovered an allergy to penicillin) with no diagnosis, we decided to try a few of our own tests.

Since many people who have a gluten allergy also have a casein (dairy) allergy, we started there. Perhaps her casein allergy made itself known first. Our first step was to stop giving her bread, which did NOT make her happy. She LOVED her peanut butter sandwiches! Next, we started researching gluten - what it is, what it does to those who have an allergy or intolerance to it, what food it's hidden in, what other names it's called. It was a frustrating and informative time! As soon as we removed the bread from her diet, we saw an improvement. She was happier, played more, wasn't listless as often - and screamed less (thank you!). She still had times where she had abdominal cramps, the liquid diarrhea and headaches (and yes, screaming). Because there was such a drastic improvement when we removed just the bread, we decided to put her on a strict gluten-free/casein-free diet. After just two weeks on this diet, she was a completely new child. She was happy, full of energy, without headaches, had normal BM's and she developed a funny sense of humor! She also gained over pound after just two weeks on the diet. She was 14 months old and weighed 19 lbs! This convinced us to stick with the gluten-free/casein-free diet! Thankfully, Aivah had a pediatrician who was willing to listen to my daughter, Annie, and was open to different ideas and suggestions. He ran a few more blood tests and a stool test. If necessary, he was ready to perform an intestinal biopsy. With the drastic improvement on the new diet, he didn't feel it was necessary to put a 14-month old child through that surgery.

Switching to a gluten-free/casein-free diet was not a simple matter of just keeping Aivah away from bread. A large percentage of most packaged foods are manufactured with gluten. (See our web page "Gluten - by any other name...") We came up with a new house rule - "Never put anything in her mouth until you read the ingredients". We also had to be very careful not to contaminate her food with gluten from the rest of the family's food, which is not easy to do. We discovered something as simple as making a peanut butter sandwich required double steps. We needed two loaves of bread (one wheat and one gluten-free). We needed two knives (the knife that touches the wheat bread cannot touch the gluten-free bread - or gluten-free margarine or gluten-free peanut butter), two containers of margarine, two containers of peanut butter and two cutting boards.

Cross-contamination is something that is very easy to do. If you place a slice of wheat bread on the counter, the counter is contaminated with gluten. You can't see it, but it's there. It's easy to be conscious of where the bread is placed - but let's not forget gluten is also in artificial flavors, caramel color, spices - any number of hidden places! (Check our "Gluten by Any Other Name" page.) You can't cook non-gluten foods in the same pan that you cook gluten-containing foods. If you do, you must cook the non-gluten foods first and remove them from the pan before you cook the gluten foods. I'll admit, it sounds a little overwhelming. So much to remember - who put what where, did I read the ingredients, where did they hide the gluten this time?

My daughter has seven children. Aivah is the last one. We had to teach the other children about gluten, cross-contamination and being VERY careful with their food. Since most children can't seem to eat without dropping or spilling something, there is always the chance that some surface (counter, chair, floor) could be contaminated with gluten and make Aivah sick. At first, I'm sure my grandchildren got tired of hearing Nana say, "If you take it out, put it away" and "If you see something on the **insert floor, counter or other surface here ** pick it up - even if you didn't put it there" and "If you make a mess, clean it up". We explained to the other kids (ranging in age from 14 to 3) what gluten was, where it is found and how sick their baby sister could get from the smallest amount. They had seen Aivah screaming in pain and had helped change her diapers when her reaction was at its worst. They didn't want to see her go through that again, either. Training everyone to be conscious of gluten contamination was - and is - the most difficult. To help us remember not to cross-contaminate Aivah's food, we bought her separate plates, utensils, and cups. We wash her dishes separately from the rest of the family's dishes - by hand with non-gluten organic dish soap and a sponge that is only used for her non-gluten dishes. She has her own drawer in the refrigerator and her own cupboard.

Another difficult part was finding recipes for her food. Since Aivah has a casein allergy, in addition to the gluten allergy, recipes were hard to come by. There are many cookbooks for those with a casein allergy - which contain gluten. There are also a number of cookbooks for the gluten intolerant. Unfortunately, many of the recipes include dairy. One thing I find odd about many of the gluten-free cookbooks - most of them mention that if you have a gluten intolerance or allergy, you may also have a dairy allergy. Yet many of their gluten-free recipes include dairy. (Check out the COOKBOOK page to find information on our new gluten-free, dairy-free cookbook.) It's fine to tell me I can substitute a non-dairy product for the dairy called for in a recipe. But, there are times when soy or rice milk products don't substitute equally for dairy products. The flavor of soy or rice products isn't always the same as dairy products and compensations or additions of other products need to be made.

We have included a few gluten-free/dairy-free recipes on our website. These have all been taste-tested by Aivah - and the rest of the gluten-eating family. There are many more recipes available in the "Don't Feed Me" cookbook. Visit our Cookbook page to read more about the cookbook or to place an order. If you have any questions or comments, please send us a note at: info@dontfeedme.com.