The Hardest Thing

It has been awhile since posting last. A lot to catch up on but wanted to write about something I was asked recently. Someone new to Celiac (their child was diagnosed) asked me what the hardest part of the Hulk's Celiac diagnosis was or is.
Almost 2 years into this, my answer is much different than it would have been I had been asked the first few months after. If you asked me then - it would have been something along the lines of "learning what is and is not gluten free, watching for hidden gluten and having to pack basically a meal every time we left for more than just a Target trips length of time".

My answer today is much different. We have a strong grasp on what is gluten free and what is not. I can grab stuff and quickly get out the door. I know where I can stop in a pinch if needed. Packing a full Thanksgiving or Christmas dinner for multiple houses - I got that. No problem. I will deal with the strange looks, the people thinking I am being over protective and even ridiculous to the precautions I/we take. I hope that people are not offended if we turn away gluten free food they have made (unopened packaged food is different) with him in mind. When Hulk was diagnosed I stopped using every pot and pan, every baking dish, every cooking utensil in my own kitchen because there was just no way to completely clean them from the gluten that was cooked in them before. We replaced everything. I hope people know that I truly appreciate it and love they were thinking of him. I just can not take chances with his health when the risks for other diseases and complications in life are so big.

Today I would say the hardest part of the Hulk's Celiac diagnosis is knowing that he will at times feel left out and there is no way around it. There will be a day he goes out to eat with his friends and orders nothing but a drink because the restaurant not safely prepare anything for him. I pray his group of friends looks out for him and takes his disease into consideration. I hope his future friends have parents who are raising their kids to be kind and considerate of others in that sense. I also know that going to a safe place - will simply not always be an option and has nothing to do with how kind his friends are. There will be times treats are handed out at school and they will not be safe for him. He will have to resort to his own treats and in that moment he might feel different. That is because he is. His body has different needs. Just like other kids with food allergies or other medical conditions. At the end of the day, he will be okay but I know there will be times his feelings are hurt and he is allowed to feel that way.

We do everything that we can to protect him while we can. We did not have a choice when it came to his diagnosis. We could not say "sorry but no thanks, we don't want him to have Celiac disease". We can however, control how we live and deal with situations that involve food. If it is our choice to decide where to eat, we will always choose somewhere that can safely prepare food for him. His sisters know this and they do not complain. They want him to be and feel included and safe. They are constantly looking out for him, making sure that what people give him is safe. I could not ask for more compassionate and understanding kids. If it is out of our hands where we go, we ask him what he wants to eat while there and I make sure to prepare and bring it with us so he still has that choice. We are honest and tell him they can not safely make him food but he can order his drink there. But if I am being honest - it kills me inside. The guilt tears me up that I can just sit and eat something without thinking and he has no choice but to eat what we brought with. My husband and I will eat in shifts at parties if the food being served is something he would normally like to eat at home. We are okay with that. We are happy to eat in shifts so he does not need to sit around and watch others eat something he thinks looks yummy. Take pizza for example. We can not always bring a safe pizza for him. We avoid cooking in other peoples ovens at all cost. I will bring my air fryer with to prepare him a hot meal if we are going to a house. I do my best to ask what foods will be served where we are going so I can get him some of the same things. I can not always do that unfortunately. Even bringing his food causes a great amount of anxiety (for me) when it is meal time. I need to be aware when I touch my food, that I don't then reach over to help him with his again unless I go and wash my hands first. I always make sure he is settled and happy and has everything he might need before I start eating. I am always watching that someone doesn't by accident, drop something on his plate when reaching or grab his drink - or think they are being helpful by helping him with food without washing their hands first. I watch his drink and that he does not use his sisters or someone else's by accident.

I know that it can be hard for others to understand why we are so protective of his food and what he eats. I know I might at times seem over-bearing. We believe science is real. Science tells us that a 100% gluten free diet/life is what he needs to avoid a future of other serious illnesses - mental and physical. We do what we need to do to protect him and we will always do what we need to do to protect him.

I carry an immense amount of guilt. That I know isn't fair to do to myself but at the same time, I can not help it. I assume I am the one that carries the gene and am the reason the Hulk has Celiac. I passed on a bleeding disorder that all 3 kids have - that I did not know about until I was 35. I would love to have everyone have the genetic test done to see who might be a carrier the Celiac gene(s) in our family. It would be beneficial for the girls to be tested so we know if we should be watching them or testing them yearly for the disease like we are now. If they don't, we could stop having that yearly test done and stop worrying if something will trigger the disease like it did with the Hulk. I am looking into the cost and what we need to do to qualify for it to be covered or mostly covered by insurance. I joked with my husband that I wanted to ask for the genetic testing for Christmas. I know that if it was my husband that carries the gene and passed it on - I would not blame him like I would and do myself.

It is funny how guilt works, isn't it?

Guilt

Guilt.

I struggle with it quite often.

When our middle was diagnosed with Von Willebrand ... we knew it had to come from one of us. Turns out, it was me. It also turns out, I passed it onto all 3 of our kids.

Way to go mom, right?

To be fair, I had lived 34 years of my life not knowing I had it. Thank goodness nothing has ever happened to me where it would have been helpful to know ... and thank goodness nothing has happened to the kids where we would have needed to know. So without dwelling, we learned what we needed to, found an amazing oncologist/hematologist for the kids, figured out a treatment plan for those pesky bloody noses that led to her diagnosis and everything has been fine.

So ... Celiac. Everyone was tested after Hulk's diagnosis. Our other kids and my husband within a month of the diagnosis - all negative. My test just came back last week - and was negative. We have not had genetic testing so we are not sure who carries the gene that passed it to Hulk and if our other two children have the markers for it or not. The plan at the moment, unless Hulk's GI orders genetic testing (or insurance wont pay) is that we are all to remain eating gluten regularly and be tested once a year unless symptoms arise.

I won't lie. When my test came back negative I felt guilty all over again. I wanted to be able to blame myself ... because what triggered it is unknown and will always be unknown. I will not ever know when his disease 'turned on'. I just wanted some sort of answer in this whole damn thing.

Every time I see a photo from the before his diagnosis I wonder if he was suffering and just could not tell me/us. That is not a fair thing to do to myself - I know that - but my heart still hurts because I feel like being his mom, I should have been able to tell. I also know that if my husband turned out to be the carrier - I would not blame him like I would myself.

That feeling I call 'mom guilt' is an incredible thing. I think it might be safe to say that we all have felt it and known it at some moment in time.

I will never know when Hulk developed Celiac.
I will never know how long his belly/body was hurting him before the diagnosis.
I don't know if my other two have the genetic markers.
I don't know if my husband does. I don't know if I do.
I don't know if or when any of them might test positive ....

I hate not knowing.

I do know that Hulk has a family that will do anything it takes to keep him safe. He has sisters who pass on treats in the store because he can't have it. If they have a snack with gluten at the house, they know to stay at the table. They know when they are done eating to clean the table/chair/floor (or ask for help in doing so), to wash their hands, and then to use the 'gluten busting spray' on the table for precaution. They know to have me look at any treats they got from outside the house to make sure it is either gluten free or needs to be put in the tote that is out of reach and locked for safe keeping. They go out of their way to make sure he is always safe.

But the guilt? I might always feel it.

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.