A Mother and Daughter living free from Gluten

My name is Melanie. I have a daughter named Kati. We are the Gluti Girls! We have been living a gluten free life since January of 2007. My husband’s name is Steve. He is a musician and has a band that sometimes travels and performs together. We also have a son named Bryan. Both dad and son are gluten tolerant.

Together we have four dogs, Mable, Triniti, Grace, and Mia that occasionally make an appearance on the blog. Three of them are rat terriers which are fairly active dogs with a lot of personality. So our home is rarely quiet. They are also gluten free!

When Kati and found out we were both gluten intolerant, we were trying to think of a name for ourselves. Our favorite television show was The Gilmore Girls. We have them all on DVD. We watch and re-watch them all the time. Hence the name, The Gluti Girls.

I have always suffered from digestive problems as far back as I can remember. I’ve had health problems all of my adult life. The most major illness I’ve had was thyroid cancer at the age of 23. Eight years ago I had an extremely rare type benign tumor in my ear that had to be removed. And about 2 years ago had an extremely large fibroid tumor that was removed as well. I like to grow things.

In the fall of 2006 when my digestive symptoms got a lot worse, I was convinced I had grown something else that was causing trouble. My doctor had me screened for celiac disease. When she first told me she thought gluten was causing my problems I thought she was crazy, until I came home and started reading about it. I was shocked because it was me. This was me!

I am one that will never know for sure if I am gluten intolerant or if I have celiac. When my doctor first told me she thought I had the disease in November of 2006, she told me to stop eating gluten right away. I did and right away felt better, but after two weeks decided it would be wise to get a biopsy. Immediately I started eating gluten again and all the nasty symptoms came back. I was so sick, I thought I was going to have to start wearing Depends (adult diapers) On January 20th, after having almost two months of misery waiting to get biopsied, I gave up gluten for good.

When I went into the GI doctor to get my results, the nurse mistakingly thought I had had the genetic testing done and that it was negative. This was not correct as I had never had the genetic testing done. She was a little confused and looked though my records only to find I had not had that testing. She told me my biopsy was negative as well. But I was obviously gluten intolerant because all of my symptoms were going away. I never received a copy of my biopsy report. By the way, I had two appointments with this doctor and never saw him except for the day of my colonoscopy and upper endoscopy. This was supposedly one of the best GI doctors in the state.

Months later, after my curiosity got the best of me, I called the GI doctors office and told the secretary I wanted a copy of my report. She faxed it to me. The report was interesting in that my biopsy said my stomach had chronic inflammation and my biopsy of the villi said no significant damage. It didn’t say normal tissue like ALL the other biopsies said. It used the word significant, which is a degree of something. Not nothing, but in that persons opinion, not enough to make a difference. I think something was missed and I’ll just not know for sure.

Sometimes it’s frustrating to not know for sure. Do I have celiac or gluten intolerance? I believe I have celiac and a botched diagnosis. No one in my family has been diagnosed with celiac, but I have a long list of autoimmune diseases that run in my family including lupus and thyroid problems which is common with celiac disease. We also have numerous relatives with digestive issues, but none have ever tested. When I can afford it, I hope to get genetic testing done so I will know for sure.

My daughter had a positive blood test in March of 2007. She did not want to have a biopsy so I did not make her. She did not have the same symptoms as I did. If she gets cc she will break out in a rash. She will get a head ache and feel sick. My son had the blood screening, but it was negative. I am always suspicious of him though. He has always been underweight, a very picky eater (always get full very quickly) and his thyroid gland went out on him last spring. Only time will tell.

I started this blog because the day I found out about this way of living, I was very depressed. I remember sitting in front of the computer crying. It was all so overwhelming. Soy sauce put me over the edge. We ate out a lot and my favorite was anything asian. Especially sushi. Especially sushi rolls with anything tempura.

But then I found the gluten free bloggers. As I read how these other people were coping, I soon realized life would be ok. I knew I wanted to give back to the community that helped me. Somewhere out there, someone is just learning they will have to live the rest of their life not eating gluten. I have this blog just for that person. If that person is you, there is a whole community here to help you. Read and learn. Life will be even better than before.