Melody is our second born and only daughter. Oh how I imagined what it would be like with a daughter. I had a terrifically close and warm relationship with my son, but I imagined that special connection that mom and daughter have to be a lifelong epitome of closeness. Yet, as the months went by she was not a cuddler. She made it quite apparent that she would rather just lie down with her bottle alone than be in my arms for a pre-nap visit. There were times when I fretted that maybe she was mildly autistic because she just didn't seem very people oriented; except with Darrell, a brother in law, who she seemed very warm with on family visits.

She had the most terrible stretch of colic every night for months on end during that first year. John and I tried to take shifts, but we soon learned first hand what the symptoms of exhaustion were - the bed moves with your heartbeat when you lie on the bed, leg cramps are a constant danger, and you suddenly realize you are behind the steeringwheel of the car only to not remember where you are going or have the foggiest what had occured over the last few miles. Scary!. At one of my Melody's well baby checkups, I showed I wasn't so well when the docter merely asked, "How are things going?". I started balling. John couldn't rest during the weekdays because he worked two jobs and I had a two year old son to keep track of during the day as well as a little one, so mommy naps were few and far between. Not too long after the colic subsided, Melody took a stretch of digestive trouble and between the diarrea and vomiting she became dehydrated. I called the doctor all through that day asking what to do and begging them to give her a shot of something to stop the nausea. Finally, as office hours where about to end for the day, I broke into tears of desperation. Everything that they had said to try wasn't working. She was desperately thirsty but couldn't keep the water down. They said to go ahead and bring her in. I could tell it was more of a 'let's humor the woman' attitude. John took her in while I stayed home to watch our firstborn. John called about an hour latter. He was calling from the hospital. He described how her breathing changed on the drive to the pediatrician and as soon as they saw her they didn't even take the time to touch her but told John to immediately take her to the emergency room while they called ahead for them to expect her. Apparently the dehydration had thrown her blood chemistry dangerously off. The nurses let it slip that if she had been any longer in getting in and getting an IV started she would have died. I felt so angry that I was put off by the staff of the pediatrician's office. I learned through that that I was never again going to beg for an appointment. If I thought my child was dangerously ill, they would have us there whether they had a convenient opening or not!

As she grew older she continued to be very prone to vomiting. Dozens of times we left church after arriving because she would become ill. The only thing we could figure was that it was a combination of a trigger-happy vomiting reflex, a tendency toward motion sickness, and large tonsils that kept the back of the throat 'jumpy'. When she would have doctor's visits, even well check-ups, the doctors always commented on the size of her tonsils.

Another thing I noticed was that she never seemed to have the energy of other children. I remember being at one of the homeschool co-op get togethers when she was about 6. I could see that she was enjoying being with the other kids and at first she kept up with them. But soon she began to trail behind. Then she walked off and found something to look at alone. One of the moms commented that it seemed as if she didn't have much energy. Seeing her side by side with age mates and another mom, more objective than I, commenting really made me accept that something was not quite right. By 1997, when John was reaching his most severe symptoms and finally a diagnosis, Melody seemed to be doing better.

I often wondered if Melody had celiac too, but her symptoms were so much milder than John's that I was diverted by the fact that she didn't have joint and bone pain, the skin rash, etc. She did have similarities to John's symptoms though. She had a very sensitive digestion and occassionally mentioned that she still threw up often while in the bathroom, but primarily she felt that that was private and didn't report it every time she did. Like John, she had that unussually low body temperature, about two degrees below normal (John typically ran 3 to 4 degrees low). She also seemed to always hover near depression. That is hard for parents to accept especially when a child is young. But we knew it was there. The kids were going through a particularly intense food-picky stage, so that a non-gluten test diet would have brought such a fight that we didn't pursue it for a long time after feeling a need to do it.

It was getting on the internet in 2000 and getting new information on celiac that prompted me to push past the struggle that would ensue for a one month gluten free diet test for her. I can tell you that I knew we were going to have a mule-stubborn fight on our hands with her. She is quiet but stubborn when she doesn't agree with something. Yet, her relief was so dramatic that by the third day she was not only cooperating but commenting that she felt much better. She began to smile and laugh. She wanted to be with her family more. Her school work improved tremendously. She was happy, even bouncy and giddy. By the end of the month, she was the most certain of all of us that gluten made her sick. We tried a wheat challenge week just to verify and she lost all the ground that she gained. She has pretty much been on the gluten-free diet ever since.

She is less sensitive to gluten than John is. When a *small* occassional gluten infraction has occurred she typically only gets intestinal 'bubbles' as she puts it. More sound than anything uncomfortable. While John would shift from being trapped in the bathroom to being bedridden. Larger infractions will take her down though. The last intentional infraction occurred at a homeschool get together when there where no non-gluten snack options available, she was hungry, and she just wanted to be like her friends. She ate a cookie and withinn 20 minutes she indicate that she was sick and we needed to leave. She was sick the rest of the day and felt that celiac sadness off and on through the next week which we kept dosing her with vitamin B12 to fight off. I felt so sorry for her beacause she had so looked forward to getting to visit with friends. Now, at age 15, I think she would rather starve to death than intentionally eat something with gluten.

I have pretty much decided that she would never be able to go the boarding route in college. I have read about other celiacs that have gone and though the college claimed they could accomodate, it just didn't work. She desperately want to go and visit some European countries with an international student organization  that contacted us, but I am worried that she will not be able to stay well without careful food preparations. Many of the European countries though are well ahead of the US as far as celiac support though, perhaps there would be enough care in preparation to accomodate.

A bit off of Melody's story, I will mention Timothy, now age 11. He has always had the darkest of circles under his eyes. He has almost constant diarhea. We did a non-gluten month with him too just last year. Unlike Melody though he insisted that he didn't have trouble with gluten. John and I are not so sure. We suspect that he had hidden his symptoms. But we felt that we wouldn't go further at this point with him. Non-gluten is life-long. We can force a non-gluten regime while he is here at home, but out on his own he will need to be convinced in his own heart. Perhaps his symptoms are milder or his determination to be able to continue to eat wheat is more intense than any relief of symptoms. Until he is ready to test again, we are going to back off. If he still seems so certain that he is free of celiac by the time he approaches age 18, we are going to go for the genetic celiac test just to be sure in our own hearts. The other two kids seem to be completely symptom free. I think that they have not inherited any celiac tendencies.