Against the Grain: A Mother’s Fight for a Gluten-Free Future
By Tina Duncan
Our family’s gluten-free adventure began in 2003 when our son turned two and began to have a myriad of unpleasant issues. Ok, I know you are all going to laugh and say there is no such thing as a perfect two-year-old and I get that, but this was way more than just your typical two’s. I had stayed home with my beautiful new bundle of joy until he was 18 months old. When I went back to work we put our son in a Goddard school.
We were told by the Director of Goddard to read, “Your Out of Sync Child”. Okay…the book was interesting and had some great information, but did not even come close to dealing with what we were seeing. We began on a journey of quizzing our pediatrician about several symptoms:
No growth in months (that turned into years),
Very pale (okay we too are a bit pale, but he just looked sick)
Dark circles under our son’s eyes (and ours because he wasn’t sleeping, which meant neither were we)
Diarrhea or constipation
4 hour temper tantrums
Irritated by light, sound, grass, touch, and more
Horrible rashes
Erratic behavior (angry, never happy, impulsive, lack of focus)
We received our first diagnosis of Autism right before our son’s 3rd birthday. When we challenged our pediatrician to find out why/how we were given the “Every parent is in denial when they get their first diagnosis” speech. Really? My son was not autistic and I knew it.
We explored further and spent years going to other physicians and I won't bore you with the number of incorrect diagnoses or number of times we were offered a prescription. Luckily, we met a wonderful person who told us about the alternative practitioner that they were seeing with their autistic child. This naturopath was a nurse practitioner and practiced under a medical doctor. I was not sure after all my years of working in healthcare that I wanted to go there, but my son was not improving and from age 2 up to age 6, he wore a 3T and was around 32 pounds. He was the smallest child in Kindergarten and if you knew my husband and I (both tall), you too, would have questioned our child’s lack of growth.
After two visits with the alternative practitioner, she told us she was pretty sure she knew what was wrong. When they performed the allergy testing, his body was allergic to everything. Since that was not possible, there was another answer. She began to explain Celiac Disease to us. We were clueless and she was so helpful in getting us to the right place. We went to a wonderful pediatric gastroenterologist who did the scope and sure enough, he had Celiac Disease. He also had reflux, several ulcers, and was a complete digestive mess. It was no wonder he was angry! If my insides were this inflamed and awful, I would have been a bit crabby and unproductive too! This came right before his 7th birthday.
Needless to say we were ecstatic because we had a diagnosis now, but like every newly diagnosed Celiac, we weren’t sure what we needed to do and what it meant exactly.
We began trying to work with our son’s elementary school. The principal at the time told us his wife was a nurse and celiac was not a disease that caused behavior issues, impulsivity, or any other ADHD-type symptoms that our son was exhibiting. He said we needed parenting classes. Really? How many celiac children has she worked with? Oh, none….. thank you for your less-than-stellar assistance and your definite lack of knowledge in this particular area.
We began our journey of working with the school system to get a well-written IEP and healthcare plan and to try to take the principal out of the equation. However, we met with reluctance at the school administration level when the Director of Student Services told us Celiac didn’t qualify for an IEP. Really? Under the Federal Law, it certainly does and we would appreciate it if you would follow the law and write the IEP with our physician’s assistance. Unfortunately, the school physician was my son’s former pediatrician who incorrectly diagnosed him with Autism. We then had to file a lawsuit due to the lack of cooperation from either the principal, resource team or the school administration. We were the first family to ever file a lawsuit against our very powerful school system.
In the interim, I found a school advocate for my son. She had 20 years as a special education teacher and was amazingly helpful. The good news about this is that the principal who was at our son’s school announced his retirement shortly before our court date. We began to work with the school special resources co-op that helps three counties in our area. They immediately contacted the school and advised them that they needed to get this resolved.
The new principal and the new resource person reached out. We were able to have a meeting and resolve most of our issues before our child began 2nd grade. The new principal had six small children of his own and a true appreciation for kids who suffer from diseases that require additional assistance. We have faced the challenges of people not seeing our son’s disability because he does not appear to be physically challenged. Unfortunately for him, his disability has caused issues to the brain (due to lack of nutrition) and he suffers from frontal lobe issues (planning, organization, impulsivity). He does not have ADHD or Autism. He has Celiac Disease and I am now an avid supporter and advocate for these children.
I have been successful in working with our administration to make major changes to supplies, food, and more. Our son is now entering 7th grade, the school safely prepares his meals, and we have plans for another successful school year.
We have been able to put together a strong IEP and healthcare plan as well as a support team around our son. It has taken a lot of meetings, suggestions, documentation, and testing to get to where we are now, but through these challenges, I have become stronger, more informed and have been able to make a difference in the lives of gluten-free kids. A couple of years ago, we were able to hold Camp Gluten Freedom with the community’s support and are now in negotiation with a well-known camp organization to hold more gluten-free camps for kids.
I now spend my time consulting with parents across the state and nation in assisting with workable IEPs and healthcare plans for their gluten-free students. I feel that my mission is far from over and I am passionate about helping kids and families struggling with this disease. When my son was in first grade if you had asked me where we would be now, it would not have been entering 7th grade for another successful school year in the same school system.
Suggestions for success working with your school:
Craft an Individualized Education Plan (IEP) that lists ALL your child's necessary accommodation needs, no matter how small you think they are. Never hesitate to ask your physician for a letter that will list additional items you or your school may not have thought of. We have a very detailed listing that I share through consulting with parents.
Make sure that if you don't need an IEP, you have a very detailed healthcare plan. Ours discussed art supplies, craft supplies, project supplies, bathroom breaks, etc. Don't leave out anything. Not every Celiac child will have deficits like our son has, but if they do, an IEP can have the healthcare plan rolled into one document.
The NFCA (National Foundation for Celiac Awareness) lists some free resources for drafting your plan at CeliacCentral.com.
When working with your school system gets tough and you don't feel like you can do it, keep going! It takes patience, perseverance, and sometimes a professional (consultant/advocate).
Remember you are doing this to make your child successful. Always approach the changes from what you, the school, and a caretaker can do to make it a successful experience.
Many Department of Education organizations offer access to an advocate. It is always wise to have someone who has worked in the school system. They can offer you invaluable advice and save you a lot of miscommunication and time along your journey.
About the Author
Tina Duncan is the co-founder of Gluten Free Living Now, Ltd. She has 20 years experience in health care administration and over 6 years of experience with Individualized Education Plan’s (IEP's), health care plans and working within the system to make sure our child is safe and successful. Her passion is to help develop a camp for kids with celiac or who are gluten intolerant, and to provide consulting for parents who need a well-written IEP and/or health care plan to provide a safe, successful learning environment for their children.
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