Our GFCF Story

My son lost the ability to point, wave, blow kisses and speak at 17.5 months after receiving an antibiotic injection for a 104.7 temperature. He lost eye contact for 24 hours and started having tantrums. Because I had a five year old daughter, I knew his symptoms were not typical of a normal illness. I was determined not to let my son slip away. When my son’s severe neurological symptoms started I stayed up all night researching on the internet the symptoms I was observing. Then I put him on the gluten free casein free diet and watched him get better.

It turns out six months of worsening diarrhea and illness had destroyed his gut flora and the antibiotic injection wiped it out completely. Changing his diet and giving him probiotics and enzymes has turned him from a perpetually sick boy with a verbal processing delay and red cheeks and a blistering diaper rash to a perpetually healthy bright talkative boy without any developmental problems (that we know about :).)

This blog is our story of his recovery and how other people in our family also got better through dietary intervention.

At 11 months, my son started projectile vomiting, I thought it was a stomach virus. Days later it was a strange blistery diaper rash that wouldn’t heal. At the same time, he developed a cold and cough that never went away. An ear infection, then another cold. Then another blistery diaper rash. The whole time he never napped for more than 1/2 an hour or 45 minutes during the day and he still didn’t sleep through the night. And his diapers smelled worse and worse. When he was on milk, he was severely constipated, when he wasn’t on milk he had diarrhea.

At 15 months I consulted two allergists and a GI doctor about what I thought was a milk allergy. They told me he wasn’t allergic to milk and there was nothing wrong. At 17 months I told my husband to bring my son’s dirty diaper into the pediatrician because something was wrong with it. Then he got a high fever which led to the antibiotic injection and subsequent personality change.

I put him on the gluten free, casein free immediately and told my doctor that I needed to see a GI doctor because I suspected his developmental issues were driven by the months of worsening diarrhea. I have consulted many doctors about his illness and recovery. In the process I have acquired a huge amount of information on celiac disease, food intolerances and nutrition.

It turns out my son and my daughter both have two genes (DQ2/DQ8) for celiac disease and all the symptoms of celiac which resolve on a gluten free diet.

I say I turned heaven and earth to get my son better and it worked. The most important thing I would like to share with parents is that the gluten free, casein free AND SOY FREE diet works. It doesn’t work for everyone, but it worked for us. It saved my son’s life. He went from no words, no mama no dada at 18 months to “Mom, I am a musician…What is a musician?” at 3 years old.

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  • Anonymous - I have SUCH a similar story with my 15 month old who lost the ability to speak, wave, blow kisses, etc. He has just started with a DAN! doctor and I’m hoping for good results. I put him on the GFCF diet one month ago and I haven’t seen results. If anything, he’s become worse. The one positive is that his bowels are SO much better than before (chronic diarrhea). I just wonder if I’m doing something wrong with the diet. Any thoughts on hidden sources of bad ingredients? Soy? Sugar? He still has soy ingredients and some sugar ingredients. Everything I buy for him is labeled gluten and casein free. Thanks in advance. -Mommy2KylerReplyCancel

  • Anonymous - I found that making my own gluten free food, especially bread, ment that I didn’t have to change my life.

    There are some great easy recipies from Doves Farm


    Have fun cooking good food.ReplyCancel

  • JFrance - We're so very glad to find your blog! My daughter didn't exhibit any developmental delays, but the physical symptoms were severe. She started puking one day and didn't stop for over a month. She never slept for more than an hour to two hours at a stretch. We had traded thrush back and forth when I was nursing her until we had to stop breastfeeding at 11 months. Finally, she became so constipated that we had to get x-rays and an enema. At this point, we gave up on getting a medical diagnosis and we pulled her back to the most basic diet we could imagine. By adding foods back slowly, we discovered gluten, gliadin and dairy were the problems. — JFrance http://www.feedingbecca.blogspot.comReplyCancel

  • Anonymous - Tears came to my eyes reading your story. I salute you, mom, for your committment and determination to solve your son's mystery. May other moms be as inspired and humbled as I am by your relentless pursuit of health for your kids!ReplyCancel

  • Anonymous - I had similar issues. However, this diet didn't help. However, I admire your tenacity and advocacy for your children.ReplyCancel

  • Anonymous - I have also joined the gfcf journey. I have seen great improvements. And your story hits a cord. It sounds like my battle since the birth of my older son. I have been on an emotional rollercoaster that family members have stepped back and looked at me like I was crazy. I still get the lack of support from family, as if this choice is an easy one that I just plucked out of the air. I KNOW it is improving my son's speech, hypotonia, fogginess, etc. He was diagnosed with high-functioning autistic and apraxia. He also has vision issues- lazy eye, droopy eyelid. He is scheduled for his second surgery, the first was at 3. I am scared this may set him back. Do you know if surgery can cause our kids to regress?ReplyCancel

  • Heather @ Life, Gluten Free - I got goose bumps reading your story. You are awesome and I am so glad to find out about more moms who make their children's health a priority and find a way to make them better. Good for you!!

    My daughter started having rashes and ezcema at just 4 weeks old. She never had any form of developmental delays or delayed growth though. It was purely physical, and mostly skin related issues.

    Since I was breastfeeding I changed my diet and eliminated gluten because my midwife suggested eliminating wheat since it's a common allegen. That helped but then I eventually started eating it again and we both got sick!

    When she was 12 months old we found out that we both have celiac disease and that on top of that, my daughter has severe food allergies. It was a journey finding it all out but now we know and she is doing so much better.

    Her symptoms were mostly skin related, she had dermatitis herpetiformis (a dermatitis that can affect those with celiac disease) but once that got beter, she still had ezcema which was related to her food allergies.

    After going gluten-free, we found that wasn't quite enough for us and we are now grain-free (no rice or corn)

    Anyways, it's always inspiring to read others stories and I am glad to find another gluten-free, allergy-free mom blog too!ReplyCancel

  • Ruthies - Our son (now 7 1/2 and a chatterbox) has such a similar story—got a stomach virus at around 15 months, terrible diaper rashes after that, awake overnight complaining, speech regression, irritability—found out at 3 1/2 (after tons of research on my part and a visit to allergist in which he tested positive to everything–huge red flag for us but not too much concern from allergist) that he has celiac. He was severly anemic also.

    So thankful we found out when we did! I'm happy to have found your blog!! Keep telling your story!

    Great resource for helping our late talkers is the book called Play to Talk—excellent!!ReplyCancel

  • Anonymous - I haven't read all the posts, but if your child is still experiencing loose bowels, then it is not all in your head and no your child will not grow out of it. This is what I was told about our son for 2 years. I was hoping to convince the doctors that his symptoms were enough reason to do a biopsy to confirm he was a celiac. The doctors did not agree. He has the DQ8 gene and I am a celiac too. I did the elimination diet with him at 3 years old, within one week his bowels were normal. I figured out the other allergies as all forms of corn, dairy, citrus and reduce vegetable oils as they are in so many foods (crackers, cookies, bread). I put him back on gluten for 1 month to prove I was right. Within 1 week, his bowels went back to messy, his behaviour was scattered with problems focusing and following directions. Now 8 years old, he has been doing the celiac diet and avoiding the other foods for 4 years as a very happy, healthy and capable boy. Just realize you will get through this, you are a Mum or a Dad who knows her child and take a day at a time, you will figure out your child's situation. Keep a food diary, I did for 2 years, listing every meal, every day while tracking pee and bowel activity. Remember, not all doctors know everything, so find out as much as you can and advocate for your child because they are all you have. take care and all the best. xoReplyCancel

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