Raising Jax the Celiac: Melinda Manages Her Son’s Celiac Disease
Melinda is a community member from Peoria, Arizona. She uses Nima to help her 4 year old son manage Celiac Disease. You can follow along with her @raising_jax_the_celiac and read more about life before and after Nima below.
What’s your food identity, and how do you maintain it?
My 4 year old was diagnosed with Celiac disease a little over two years ago. Three months before my son’s second birthday, my child was suddenly throwing up regularly had severe constipation, vomiting, lethargy, weight loss, stomach pains, bloating and fatigue. Two different doctors completely dismissed my concerns chalking it up to constipation that would ultimately disappear. I was told he could take Miralax for years by one doctor and another actually told me it was not in my child’s best interest to do further testing. I knew in my heart there was something seriously wrong with my baby. Over the course of three months I had finally found a doctor that agreed to run tests. It seemed like forever! Not only did my child have Celiac disease, he was anemic, was suffering from malabsorption and was failing to thrive. It only took two days of being on a gluten free diet for my son to be his wacky, rambunctious self again.
The easiest way we stay gluten free is having a 100% gluten free home and we usually stay home and cook all of our meals. When we visit friends or family we pack food so we do not have to worry about cross contamination (meal prepping is a life saver).
When we go out to eat we will call the establishment ahead of time to see if they can truly make gluten free food. If they seem knowledgeable we will give them a chance and bring our Nima sensor with us for added security. If we cannot be accommodated and for example it’s a special occasion we will pack food. We have never had any issues doing so. Most establishments seem to be ok with this as seeing they are still getting other purchases (I verify this when I make the initial call).
Tell us a little about your gluten-free journey. What was it like when you started eating gluten-free? What challenges did you face?
It was at first overwhelming! We quickly realized gluten is in seemingly everything! Our initial challenges in the home was what do we replace in the kitchen that may or may not be contaminated. Many different people recommended different things, some people recommend getting rid of everything and others said only a few things. We started with colanders, toaster ovens, cutting boards, slotted spoons and spatulas. At my son’s 6 month follow up his Celiac panel still wasn’t as low as we had hoped for so at that point we replaced our pots and pans and anything plastic and that seemed to do the trick.
It was hard for us to find what the good gluten food options were. Each store seems to carry different items There was a ton of trial and error and talking to others with experience on what to try. Seems like in the beginning we wasted a lot of money trying EVERYTHING!
Another major challenge we faced was dining out. It is really a gamble! You are trusting these establishments to not cross contaminate and essentially poison you, and then when they do it is a nightmare. We actually went to a restaurant and they had gluten free clam chowder, didn’t cross contaminate, they used corn starch as a thickener etc. and they accidentally brought my son regular clam chowder! That was when we decided we needed a Nima.
What was your food life like before you had your Nima?
Before our Nima we dreaded going out! It is a process; call a restaurant, see if they are knowledgeable about cross contamination and if they can guarantee they won’t, then making the decision to go and silently praying our child doesn’t get sick. It became not worth the struggle that we started packing his food or just staying home.
What’s your food life like now that you have Nima?
Our life is a lot easier with our Nima. I no longer waste time calling food manufacturers and asking how they process their product or just not buying the product all together. I feel like we are getting our pre- gluten free lives back and giving our son some much needed normalcy. I want him to be able as he is growing to go out to eat with his friends and family and not have to always pack food or worry about getting sick. I never ever want him to feel excluded.
What do you test with Nima? Has there been anything that surprised you wasn’t safe (according to Nima)?
We test everything that is not labeled certified gluten free. I think I am always mostly surprised at the things that end up being safe. One time we tested a smoothie from Mcdonald’s and it was gluten free. I think the number one thing that surprised me that wasn’t gluten free was food from one of our favorite restaurants. We had successfully (or so we thought) been going to this particular restaurant for about 9 months. My son never seemed to have a reaction (most times his reactions take 3 days). We decided when we got our Nima to test them for fun and the food was not gluten free.
What do your friends, family, and/or doctors think about Nima?
They think it is fascinating!!!!!! I am constantly being asked if I could test things. It is our awesome party trick! Unfortunately none of our doctors have heard about Nima but I informed them about it and they were looking into it.
When using Nima at restaurants, what has been your experience? Do you have a favorite Nima related story?
Our experiences at restaurants with Nima have been good. Nima has saved my son on more than one occasion. I think the more people purchase and utilize their Nima’s the more restaurants will try harder to not cross contaminate. My absolute favorite Nima related story is we went out to eat after a long day of getting my dad’s house ready for sale. We were exhausted so I packed my son a quick meal and we headed out. I had zero intentions of ordering my son anything. My dad mention my Nima to the server and she begged me to test them. So we ordered a cheeseburger and she patiently stood by the table as we tested and it came back gluten free!
Bonus fun questions:
If you can only eat one food for the rest of your life, what would it be?
(for fun my 4 year old Jax with Celiac disease is going to answer too)
The one food I would eat for the rest of my life would be cereal!
Jax’s one food he would eat for the rest of his life would be marshmallows.
If you can only use one spice or condiment what would it be?
The one spice would be garlic powder.
Jax’s one condiment he absolutely cannot live without is ranch dressing.
If you can only choose one restaurant for the rest of your life where would it be?
The restaurant I would choose to go to for the rest of my life would be Puskin’s Bakery in Sacramento California.
Jax’s absolute favorite restaurant he would go to every day of his life if I would let him is In-N-Out Burger.