I have a child with Celiac Disease

Let me start off by saying I am not a medical professional, but I am a mother with boat loads of experience on this topic.

When my Emma Grace was a little over a year old and after many fights with many doctors at one hospital and a referral to a better hospital we got her Celiac diagnosis. You see, my Emma couldn’t gain weight, she was tiny, and sickly. I had to summon everything I could to fight for her, when the doctors were pacing around the issue. I already had one child with food allergies, I knew, I SAW that something wasn’t right. She was lethargic, she was tiny, you could tell her tummy hurt. Finally her doctor referred her to an amazing GI specialist who listened to me. Blood work was drawn, and a few months later she had a biopsy of her intestines. At this point my sweet baby had a feeding tube in place, and had a few surgeries under her belt.

The next step was educating myself on Celiac disease and what exactly it was. Celiac disease isn’t a fad, it is a serious auto immune disease. What was happening to my child’s body when I fed her breads, pastas, cookies, or even when she played with Play Doh or painted pictures, was serious. Your intestines have these little appendages on them called Villi, and when a person with Celiac disease eats gluten their immune system responds by damaging the villi and because of this the intestine is unable to absorb vital nutrients. The result is poor weight gain, vomiting, diarrhea, even psychiatric symptoms like depression, and anxiety. My child experiences chronic fatigue as well, even though we’ve maintained a strict gluten free diet.

Celiac affects the whole family.

Everyone must be on board, everyone who cares for your child must educate themselves on Celiac, and on gluten free eating. The good news is that its much easier now to find gluten free snacks and meals for your child, many companies have been proactive in labeling their foods so they can be enjoyed by all. When I married my husband he had a lot of questions, but I got lucky, he looked up what he could, he asked those questions. Now he’s a pro at taking care of her! If by chance my child does come in contact with gluten, its very noticeable. Her eyes turn purplish/red, she becomes sluggish, and sick to her stomach. It may be easier for your entire family to eat gluten free, but that isn’t always realistic. I went the route of educating my family, I educated my other two children and most importantly I educated my daughter with Celiac disease.

From a very young age my daughter was able to tell people what she can not have. That’s why it’s so important to let your child know that they have special dietary needs. While I’d like to always be there, I can not always be there. I’m not with her at school, for example. Teaching your child to be their own advocate is crucial when they have an auto immune illness, or an allergy. I accomplished this by providing her with a medical bracelet at first, my son had one as well for his peanut allergy. It was comfortable, and easy to customize. I’ll insert a link below to the one we used. Having the bracelet was a nice, and cute reminder for her to explain her condition and what she wasn’t able to have.

You have to research every day.

I do research on the daily, gluten is hidden in so many every day items, soaps, shampoos, lotions, even make up! I read labels like a mad woman, I’ll take up an aisle in the grocery store pouring over ingredient lists, but hey, whatever it takes. Trips to the zoo? Research. Do I pack a lunch? Do they have options for her? Dinner time at Disney world was strategically planned around which stops at Gluten free options. I will say though, they were wonderful and had so many options. One thing I find amazing is how inclusive big brand names like Disneyworld and Legoland are when it comes to children with allergies and Celiac. Celiac disease is serious, and it has no cure. There will always be those who will be less than accommodating, either by their own ignorance or their refusal to educate themselves.

So what is gluten anyway?

Gluten is a protein found in Wheat, barley, rye and due to cross-contamination with wheat fields, many oats. This is a protein that binds things together and gives dough its elasticity.

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