the making of a pb&j

Before the Hulk was diagnosed, a pb&j meant grabbing the bread (the gluten filled soft stuff), a jar of peanut butter and your choice of jelly. Crumbs? Who cares! (my kids certainly did not I will tell you). Grab the jars, shove the knife in there, spread everything around and boom. Happiness.

My oldest has been taking uncrustrables for lunch recently. She is picky and those seem to do the trick for her lately (I will take what I can get - no judging please!). They give her gluten that she needs (if we don't continue to eat gluten, our yearly blood tests will be inaccurate), they are individually sealed and take up little space in the freezer. However, have you looked at the cost of those? Actually, I haven't - my husband bought them the last few times but from what he says - the cost is dumb. So, of course, I decided I would make my own. I mean, I can be that modern day DIY Martha (who hasn't done hard time). Upfront the cutter was a small "investment" ... but regular bread is inexpensive, as is the jar of peanut butter and jelly. So, I went to target, gathered up my supplies and brought it all home.

And then I froze. I had to open up the gluten filled bread in the kitchen I worked hard to clean and make a safe zone for Hulk.

No big deal - I can do this ... in a few days.

Fast forward to tonight - I grabbed the Target bag of items, the baggies I would need, the freezer bag, a marker, knife, I cleared the counter off and made sure all the surrounding cupboards and drawers were closed. I was ready.
I marked the freezer bags like they were a housing toxic chemicals (which to Hulk they pretty much were), opened the peanut butter, the jelly, and laid out all the bread in an assembly line. Jelly ... peanut butter ... spread .. close. Then I cut everything with that handy cutter I was talking about. And packed them up in their baggies (yes, a waste of baggies - I should think of a better way to wrap them but for now - I am doing my best and I can throw them right into a lunchbox), then into the freezer baggie and right into the freezer they went.

Now to clean up. I rinsed off the knife and the sandwich cutter (first making sure the sponge was on the other sink side, otherwise I would have had to throw that away) with hot water, soap and some more hot water .... and for good measure a little more soap. Then I got a paper towel wet, lathered up some soap and washed the counters down (top and the face of the cabinets). Wiped those down. Used my homemade gluten busting spray. Wiped them down again. Sprayed anything else I touched ... and then for good measure used the disinfecting spray on the handles/cupboards.

And as I am sitting here ... I am still not fully content with the job I did making sure I kept everything clean. I just cross my fingers and hope I got it all.  I also hope my oldest actually eats these and wont find anything wrong with them.

And that my friends, is the making of a pb&j these days in my house.




It might be easier just to buy the damn uncrustable.

How much does it take?

The Hulk was glutened today. I feel like I failed him - I did not protect him and I did not do everything I could have to keep him safe. It sounds dramatic I am sure ... but it is my job and in simple terms, I screwed up. I also learned from it ... which is I suppose, the upside of it. 

He and his sister were playing with friends before dance class. They each had their own juice boxes - and their own snacks. Her snack contained gluten and his obviously did not.
I did not notice that he took her juice box until he had already been drinking from it ... he didn't even have to eat her snack. Just drinking from her juice box - because she had a snack with gluten - was enough to trigger symptoms about an hour later. Hulk loves dance class. He is almost always the first to go in with a huge smile. Today he started crying, he clung to my neck harder than he ever has and he told me he was scared - but he did not know why. It took almost 20 minutes to calm him down and get him even near the door. We made a small game of knocking on the door and he wanted to go in ... until we stepped in the room. I gave his teacher permission to take him crying hoping that once he was in he would settle and enjoy himself. Luckily that was the case. But when he came out - it was back to tears and strong emotions again.

The reality is that Hulk will have Celiac forever. I have in my head come to terms with it. There is no cure, there are not medications to help ease symptoms when one has ingested gluten (I can only hope those things change) ... he has to eat a strict diet that is void of gluten - including cross contamination from gluten containing things.  And that is hard - so hard. It can happen in ways you never expect. So while my head has come to terms - my heart hurts so bad for him (and everyone living with Celiac). I have to deny him treats he is curious about and wants to try because he sees others having it - and tell him I will do my best to find a safe, gluten free option. Sometimes, he even beats me to it and will say "you find me a gluten free kind of these please".


So how much does it take?
It takes a crumb to get him sick, a tiny crumb, to feel the effects of gluten in his system.
Celiac also takes away the ability to just go out and grab food. It takes away the sense of trust when others make food. It takes away our ability to just leave the kids with someone - I prepare full meals, snacks, treats ... and I still worry it isn't enough - that he will come into contact with gluten some how. It takes time - you can no longer trust foods because they can change from batch to batch in the manufacturing process - from how they are packaged to the ingredients used. It takes from being able to just go hang out and have a snack with friends on a whim. It takes his ability to do things he loves when he is 'glutened'. It takes away his ability to control and process his emotions and his ability to just feel well. I could continue on and on ...

What it doesn't take?
For me at least - my drive ... my motivation. Perhaps, it has given me more in that sense. I will do anything necessary to keep him from eating or coming into cross contaminated food. I can not take this from him - I would in a heartbeat - but I can devote my energy toward keeping him as safe as possible and helping him learn how to lead a healthy life with it. I will do everything to keep him from being sad about it - to empower him to make smart choices and find safe alternatives. And to empower him to be able to speak up and advocate for himself, especially regarding this disease when others don't understand it.



I am sorry today I missed the juice box Hulk. Next time I will be more careful for you.

Mac-a-no-nee and Cheese

So Hulk loves macaroni (or 'macanonee' as he puts it) and cheese. Most times I grab two different blocks of cheese, add some milk, half and half .. whatever I have handy and a little butter and go from there.
I came across a recommendation and rave for Anthony's Cheddar Cheese Powder in a Celiac group and my curiosity was sparked. I wont lie. Once in a while I still enjoyed some basic blue box Kraft mac and cheese. It is true, I confess.
From our journey so far, there has not been a GF boxed mac and cheese that the kids have liked. Do they NEED mac and cheese from a box? Nope. Is it nice sometimes to just pull out a box and make it? Yup. It sure is.
So I made my way onto Amazon, avoiding everything else that caught my eye (along with ignoring everything I have saved in my cart for another time) and purchased a bag. It was roughly $13 when I bought it. 
The review: the kids loved it. I used about 1/4 cup of the cheese powder with milk and butter and it was awesome. The kids liked that it was not stringy (sometimes when I make it with various cheeses it gets stringy) and that it tasted really cheesy! I liked that I could read all the ingredients before getting bored, it was easy to use, and the kids loved it. Especially that the kids loved it. I also like that we can choose the type of pasta we want to pair it with (not all GF pastas are equal - we really like Barilla brand) and that we can choose to make as much or as little as we want at a time. No more wasting a whole box for one kid ... or adult.

If you or your kiddo is gluten free, for whatever reason and enjoys a bowl of simple mac and cheese - I recommend giving this a try! The back also gives suggestions on using it in other dishes ... I may need to try over broccoli for my more picky eater!

"So, he can't eat bread?"

Before Hulk's diagnosis, I did not know much about Celiac except it was like an allergy.
Which, before we move on - it is not an allergy. It is an autoimmune disease. He will not outgrow it, there is no treatment beyond a completely gluten free diet.

Instead of trying to a creative/different way to say it - I pulled the following information and image from  https://celiac.org/about-celiac-disease/what-is-celiac-disease/ :

Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.

When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.

Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease.

Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Left untreated, celiac disease can lead to additional serious health problems.

So when someone asks if he can't eat bread ... they are both right and wrong. He can not eat 'normal' bread. He can eat gluten free bread (which, if I am being honest, it sucks and is very expensive). But he also can not eat anything that contains wheat, barley, rye ... or use things with those ingredients (shampoo, lotion, sunscreen, ect). He also needs to avoid things that may have come into contact with those ingredients along the way during processing/packaging/serving ... I will save that for another post about all the surprising things I have learned contain gluten that we will need to avoid or find substitutes for and about cross contamination.

This is just the start - I want to followup in posts along the way about symptoms from ingesting gluten, products (including medications!) and foods that contain it, what nutrition and warning labels mean and so forth. 

The diagnosis

I can not tell you my son was a top scientist working on a secret project who was exposed by accident ... what I can tell you is that he was a seemingly healthy 3 year old boy who we took to his yearly well check exam and walked out with our world rocked.
Well that last part is not exactly true in that very moment, so let me back up.
I took him in, assuming we would walk away with some updated stats - how much he has grown, weight, ect. When our pedi looked at his growth chart, she realized he was not registering for height on the curve. She started asking some questions about his bowl movements (he had been having diarrhea for a while which I had brushed off as him not eating well, upset belly, teeth ... you name it. He never seemed or acted sick - so I really did not find myself thinking twice about it) among other things.
She mentioned that she had seen some similar symptoms in a recent patient who they discovered had Celiac disease and that she wanted to run labs. I went along with it, because we love and completely trust our pediatrician ... however when I left that day and called my mom I told her that everything would be negative and that she was just double checking. I mean, no one expects something to be positive when it was not even on the radar going in.
A day or two later our world was rocked when she called. I was already in tears because I had seen the lab report just before and could draw to the conclusion that his numbers were far from normal. She knew just what to say (we had some other recent diagnoses/answers to something our middle child had been dealing with just a few months prior) and got us moving toward an appointment for an endoscopy.
That was done about a week and a half later and he officially had his Celiac diagnosis on November 7th 2018.

I started learning everything that I could. I cleaned our kitchen out. I threw away/gave away anything that contained gluten. We bought a new toaster over, cooking utensils, food, baking supplies, spices ... you name it. We spent a small fortune that first month - without regret - but we were not planning to have to do that so it was tough. We also had to introduce a dairy free/lactose free diet for him for awhile while he began to heal. Our entire home became gluten free. I do not cook with any gluten containing ingredients. I do buy some prepackaged snacks for our daughters to take to school/dance - however if they want to eat it at home they have to be very careful, sit at the kitchen table, wash their hands right after and clean their area with soap and water and a gluten 'busting' spray after. Needless to say - we just save those snacks for when he isn't around. He does however, now question everything and I think he understands when I say something is not gluten free and not safe - he will not touch or try to eat it. His sisters have become educated advocates for him. They are always checking for gluten, asking about it and reminding others about it. They have never complained about the changes and realize how important it is to keep him safe from gluten containing items.

Thanksgiving rolled around and I had my first taste of having to completely prepare for him to have a meal outside our home. I cooked an entirely gluten free thanksgiving dinner - for him to take 5 bites and be done. It was exhausting and rewarding .. I was sad and proud ... both nervous and confident.

Since diagnosis and going gluten free, he has gained 1 pound and grown 1.75 inches. Incredible. I could have cried I was so excited.

I am not sure where this blog will take me ... I hope perhaps, those who read learn something new that maybe they had not known before. Perhaps someone will recognize some symptoms and check into them ... or find a new recipe or product they too will love.

Welcome to Celiac and the Hulk

Welcome to Celiac and the Hulk. I hope to document my son's and our family's life after his Celiac diagnosis in November of 2018.
Welcome to our story.