Sunday, March 18, 2007

Our Story

The year was 2001. I had had it. I had to find out what was going on with my family. Of my 5 children, 2 were developmentally delayed, one had Aspergers Syndrome, one had lost about 30lbs in the last year and was having problems thinking, not to mention a husband who had Hep C and had been "cured" but was still sick with various symptoms. I was told I had IBS. (update: as of spring 2006 daughter diagnosed with Aspergers)

Thanks to a friend who clued me in on a gfcf diet used for kids with Aspergers. As I began to do research I saw the connection between Celiacs and Aspergers and decided to at least get my daughter tested for Celiacs. (We had a niece diagnosed I think in 1990)

Long story short...she was positive. We started the diet and saw a miraculous recovery very know, the 3 days and her tummy which had hurt for years stopped hurting and of course you know the rest..within 2 weeks I had a new daughter. (update:She was just diagnosed with Aspergers spring 2006)

With this quick resolution, I took my other 4 children to their pediatrician who ordered a Ttg test. They all came out negative. I knew with the symptoms my son with Aspergers had he had to have celiacs. (many of the same GI problems) Taking him back to the GI doc I was told to not worry about further testing, since I was already doing the diet with my daughter just try it with him and see what happens. He did assure me that the stories about autistic kids getting better were just antidotal stories and to not expect much. He did tell me what I thought was a lactose intolerance with my son was probably a milk protein allergy. Thus, we began a gfcf diet with my 12 year old with Aspergers.

Within 4 days of the diet we again saw miraculous changes. Digestion problems got better. But what was unexpected was the behavior changes. We went from daily meltdowns to a peaceful and calm son. Within 4 weeks of the diet, our son who had not made eye contact his whole life began to make eye contact. He became more verbal. Within 9 months he began to lose some of the autistic symptoms and even talk with people outside the family. The longer he is on the diet the more changes we see.

Next, was my 15 year old son who had lost 30+ pounds. We did Dr. Fines genetic test and while waiting for the results started the diet. Within 2 weeks my son gained 5lbs. and regained his lost cognition and stopped having migraine headaches. The gene test came back showing he had the DQ-2 gene plus another gene for gluten sensitivity. He has done great on the diet.

My oldest daughter did not 'appear' to have symptoms of celiacs, although she did have some digestive problems....opposite of the other kids. She appeared to be my healthiest AND she was convinced she didn't need this diet. I knew she had a problem with dairy but not gluten. We did Dr. Fines testing for gluten and dairy along with the genetic test. Her results showed she had a DQ-8 gene and another gene for gluten sensitivity. Plus antibodies for casein. We started her on the diet, not really expecting many changes. We were surprised at the changes we saw. Her bloated tummy went away 3 days on the diet....we just thought she was built that way. She looked like she had lost 10 lbs. Also a dermatitis on her feet got better in 2 weeks, she had that since she was a baby. She had always choked on food, that was gone as well.

One more child....developmentally delayed, social phobia, ocd, feeding problems since birth, picky eater, choking on food. Our pediatrician said, "Well, start the diet and see what happens." We did, and again we saw dramatic changes with all the above symptoms.

It just made sense my husband was the one to have contributed this genetic make up, as his sisters' daughter was diagnosed with celiacs in 1990. He started the diet and the same thing....many, many symptoms cleared up.

I thought I didn't have this. I did Dr. Fines genetic test to find I didn't have a celiac gene but did have a double gene for gluten sensitivity. I knew I was lactose intolerant but just wasn't convinced about the gluten. I was doing the diet by default. I saw a lot of changes but attributed them to taking dairy out of my diet. Then after buying products from an unreliable source and getting small amounts of gluten for 3 months -everyone in the family got symptoms back....including me....and that was just dairy. Once the gluten was found and taken out I got well, again.

We began to see a real need for support. We started attending the support group meetings in OKC. It was great, but a long drive. A year later with the encouragement of a friend and a lot of prayer we started the Celiac Support group here in Norman, OK. Thus, we began in September 2002.


Anonymous melissa said...

Kate, You left a note on my blog some time ago, and I have been meaning to reply. I just read this note and I realized that I might have YOUR number on my cell phone, did you post a note at Dodson's about a support group probably a year ago?

Thanks for your story. We have similar stories, and I'm just too chicken to do the diet with kids who don't have obvious issues. I think we all need to do it though, so thanks. When are your meetings?

12:49 PM  
Blogger Kate said...

You can email me at for more information concerning the support group or you can call me.

1:18 PM  
Anonymous Eric said...

Love seeing good results from parents doing the GFCF diet with their children.
We've introduced l-carnitine as well as many other bio-meds for our autistic boy, as it assists children who have inability to absorb essential fatty acids....the symptoms of which are remarjkably similar to autism!

10:08 AM  
Blogger The Patient Connection said...

Coeliac Disease – Its Diagnosis and Treatment – Tell us your story in a New Research Blog

We would like to take this opportunity to invite you a research blog on Coeliac
We are particularly interested in the story of your diagnosis and treatment.

To take part please click this link

Please feel free to post any links to useful resources for other Coeliac sufferers.

The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.

Best wishes

The Patient Connection

PS Please email me if you have any queries about the blog or any of our projects.

3:50 AM  
Blogger Sheltie Girl said...

Kate - Thank you for sharing your story with us. I'm so glad your family is on the journey to good health with the gluten free diet.

Sheltie Girl

5:57 AM  
Blogger Rhology said...

Wow, that's crazy.
I always thought I was lactose intolerant, but then I started GF diet. My wife (Aubrey) had been GF for a coupla years. Then I had strep throat and mononucleosis at the same time recently and was home for 2.5 weeks. She said, "You're home, you might as well try it!" So I did and many annoying symptoms went away. I have since reintro-ed dairy into my diet and it's not really giving me any problems.

Most of my symptoms were GI related but I also had constant post-nasal drainage down my throat that would get me sick w/ a cold and sore throat every 4-6 months. I'm glad to have gone GF. And I'm getting better and better at using my breadmaker to make delicious GF loaves.

8:34 AM  
Blogger hiphoppe said...

Hello, Kate, my name is Michelle and I just started blogging about Celiac as well. Check it out and let me know what you think.

8:11 PM  
Anonymous Chloe Boggs said...

Wow, I think my vocabulary skills are lacking to describe the struggle and pain you had before entering the support group. I can only imagine how you felt druing those tough times.

3:03 AM  

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