Monday, June 30, 2014

Greyden - 23 months!

Roy Boy, you turned 23 months this past Saturday!! That means that in less than a month you’ll turn 2!! I just can’t believe it. I feel like the second year of your life has gone so much faster than the first, and the first went by quick as it was.

Lately you've been walking around with your hands on your hips. It cracks us up.

You are such a fun little boy. You are spirited and determined. You are also extreme - either happy or sad, very rarely in between. The only time you become quiet is when you are around new people or very tired. Otherwise you are happy and full of grins or screaming your head off because you’re upset. You’ve been this way your whole life, and I’ve always wondered if it’s just a stage you’ll grow out of or if it’s your personality. I’m starting to think it’s actually the real you.

You pull cereal off the shelves in the grocery store when I'm not looking.

You love to run now and tend to throw caution to the wind and have gotten many bloody knees as a result. You also still love to climb, and you’re working on learning how to jump. You can go up and down the stairs on your own now, but I still get a little nervous about you going down and like to walk in front of you.

You love to swim right now.

Your vocabulary has exploded and you talk, talk, talk. I would guesstimate that you know a few hundred words, if not more, and you’re now stringing them together into short sentences. You love to narrate and comment on everything that’s going on around you. “I running! I run hard! Airplane! Daddy go? Whaswong? (What’s wrong?) Whadoin? (What are you doing?) I eat. I hungry. Hi Krew. I do it! Oh no! I get da balls!” One of your favorite things right now is to run up to me (or your daddy) and say, “Mommy, mommy, (or daddy), come eah [here], I see sumting,” and then you grab our hand and pull us away. It’s pretty darn adorable and we have a hard time resisting you when you do it. You also demand to be independent and do everything on your own now, with a defiant, “I do it!!”, and it of course makes everything take ten times as long as it should.

You go through phases of being a daddy’s boy like your older brother, but you still choose me sometimes and I’m so, so glad. For example, if I ask you to go to the store with me, you’ll usually gladly agree without bribing. Your older brother would never (and still won’t) do that.

You love shoes and daily state your preferences between your crocs, flip flops, or other shoes. You also request to wear socks on a daily basis. I usually tell you no given that it’s summertime and hot everywhere right now, but your daddy occasionally gives in and sticks them on your feet. :)

You are wearing anywhere from size 5 to size 7 shoes, depending on the brand, size 3 diapers during the day and size 4 at night, size 18- or 24-month shirts, and size 18- or 24-month shorts. You have a very long torso and so shirts are a bit more difficult to fit on you than shorts. Your bottom incisors came in and so you now have 16 teeth. Your birth mark on your nose is still there, although very small, and your hair varies between looking light brown and blonde depending on how much you’ve been in the sun, the lighting, and the last time I cut it.

You are still obsessed with electronics and it still drives your daddy and me batty. It is a daily fight. We’ve now put all the kids DVDs high up in a cabinet in the kitchen so you can’t reach them (you were bringing them to us all day long and having tantrums when we said no), and we frequently have to hide the iPad, our phones, and the iPod touch.

You go to bed fairly easily without much fuss. Even if you’re not tired, you’ll usually just lay quietly in your bed until you fall asleep, sometimes reading books. You typically take one nap per day, and I can put you down anywhere between 10am and 2pm and you’ll sleep anywhere from 2 to 4 hours. You go to bed between 8 and 9pm and wake up anywhere between 6:30am and 8:30am.

You are a picky eater and will eat very few fruits or vegetables. You love bananas and apples, and about 50% of the time you chow down green beans, but every other fruit and veggie is hit or miss. We’re still letting you have a lot of fruit packs (pureed fruit and veggie pouches) because you love them and it means you’re getting fruits and vegetables in your body.

You still suck both of your thumbs, and your daddy and I have decided to start trying to wean you from them since we can see that your teeth are starting to buck a little. It’s going to be a hard habit to break, though. You sure love your thumbs.

You trail behind your older brother almost everywhere he goes, and you absolutely adore him. I love the way you say his name, and you call him both “Krew” and “Krewson.” You and he have actually started to play together some now that you can copy what he does, and it makes me soooooo excited to see you interacting. Despite your very different personalities, I really hope you can grow to be best friends.

Discipline is starting to show more results now that you can communicate well. If you’re throwing a fit I’ll say, “Do you want to go to your crib?” and you’ll wail, “No cwib!!!” Then I’ll say, “Ok, then stop crying right now,” and immediately you’ll pull yourself together and stop the sobs. Also, when we tell you to start doing or stop doing some behavior, we know that you can understand us. Although you respond to discipline in terms of your behavior (you’ll stop the forbidden behavior, or obey, or do what I said after certain consquences), training your heart is going to be a whole different issue. You very rarely act remorseful for anything you do that upsets anyone. Many times you grin through the entire discipline session. Hopefully this is something that will change with time as you mature and learn that other people have feelings, too.

Little trouble maker.

Alright that’s all for today. The next post about you will be your two-year birthday post! Wow!

To finish up, here are some pictures with your new haircut that I gave you last Friday. :)

Love you little man!

Monday, June 9, 2014

To My Family and Friends - A Letter and Guide from Your Celiac

Dear family and friends,

I just want to say sorry, now, ahead of time.

I'm genuinely sorry for the anxiety, frustration, annoyance, and confusion I'm going to cause you. I hate it.

I'm sorry for your time and money that I'm going to waste when I don't eat a gluten-free food you've prepared if it wasn't prepared to the standards I've been told to follow.

I apologize for the times I may be irritable, exhausted, or complain about feeling sick.

I apologize for all the times you're going to hear me say the word "gluten."

See, I have this disease. Celiac disease. It's an autoimmune disorder, and I'm going to have it for the rest of my life. When I eat gluten, my body attacks my small intestine, the nutritional gateway for my body. And when that happens, a whole slew of other things go wrong.

When I consume even a trace amount of gluten, invisible to the naked eye, I can experience any or all of the following:
  • Nausea
  • Bloating
  • Cramping
  • Sharp intestinal pains
  • Flatulence
  • Diarrhea
  • Constipation
  • Canker sores
  • Fatigue so heavy I could collapse
  • Lactose intolerance
  • Chicken bumps on the back of my arms
  • Acid problems in my stomach
  • Brain fog
  • Anxiety
  • Depression
  • Inability to concentrate
These symptoms could last for hours or for weeks.

I have been struggling with these symptoms for years now, some of them for as long as I can remember. You've probably been unaware of them most of the time because they had simply become a part of me. I had accepted them and tried not to complain as best I could. Some of them I'd almost failed to continue to notice. They had become my normal.

But now it's time to face them and deal with them. Now I know that when I'm experiencing these symptoms, not only am I struggling with the symptoms themselves, but there is a war going on in my body that can set me up for many health problems down the road.

I am now at risk for a whole bunch of other diseases, autoimmune disorders, and other symptoms of celiac disease that I have been fortunate enough to escape thus far.

This disease could also be responsible for my anxiety, my depression, my under eye circles, and my severe dry eye syndrome.

I know this is overwhelming to you. It is to me, too. I don't want to inconvenience you, I don't want to put a damper on our social times together. And I don't want to have this disease. I don't want to live life paranoid about a tiny protein, unable to eat the delicious foods that millions of others enjoy. It really honestly sucks. But it's the hand I've been dealt, and unfortunately it's the hand you've been dealt as my family or friend. So let's work through this together.

When I'm at your house and you're cooking for me, I may request the following, and I kindly ask that you please not get offended. If the below is all too much for you, and I 100% completely understand if it is, I have no problem bringing my own food or running to the store and picking some up. I have gotten used to not eating what everyone else is eating, and I really don't mind. So if you're feeling leery about serving me, just say so ahead of time. If you do want to take a go at it, here are some things I kindly request:
  • Pull out a new kitchen sponge and scrub any hand-washed items you're about to use to cook for me. Kitchen sponges hold gluten and hence your dishes that were previously cleaned by hand may have gluten still in them.
  • When you dry kitchen items that are going to be used to prepare food for me, use a new dish towel that has not touched other glutened kitchen items or glutened hands.
  • Whenever possible, use non-porous and non-scratching items for cooking. These are less likely to hold gluten from your previous cooking. This includes:
    • Metal mixing bowls instead of plastic
    • Metal kitchen utensils instead of plastic or wood
    • Glass cutting boards instead of wooden or plastic
    • Stainless steel pots and pans rather than non-stick.
  • If you touch gluten (such as pasta, bread, or a condiment that has gluten in it), please wash your hands before touching anything that will be used to cook for me.
  • Let me read every label. Even if you saw "gluten-free" on the package, please let me still read it. Some of these "gluten-free" items still say "May contain wheat" on them or something similar, and I simply can't take the risk.
  • Understand when I don't use a jarred condiment that has been previously used. Double-dipping into condiments leaves gluten in them and it can make me sick.
  • If you realize that something with gluten has touched something you are about to serve me, please be honest and say so and realize that I probably won't eat the item. Even a crumb falling into a bowl of veggies means that I can no longer eat any of those veggies.
  • Have separate serving spoons for each dish, and instruct other guests to not use switch spoons between dishes as it could lead to cross-contamination. If you are concerned about his happening, let me get my plate of food first.
  • With bags of gluten-free snacks such as chips, I cannot eat from the bag if a glutened hand has previously been in it. I can only eat from new bags of snacks or bags that have not had any hands in them.
  • Finally, please don't get too upset if I get sick. I get sick at home, too. This is a learning process for all of us, and gluten spreads so easily that it oftentimes feels like an impossible battle.
I love you all dearly and hate that this list of guidelines has to rule our meal times and snack times together. However, I wanted to write it out for you, to help you, because I'm sure that the thought of me coming to your house for food is enough to send you into an instant state of panic. Honestly, I'm not a fan of food time in general anymore. I kind of wish I didn't have to eat. But, alas, I do, and so I have to work around this. I'm taking it one day, one meal, at a time.

Thanks for your love, support, and understanding as we navigate this together. :)


Saturday, June 7, 2014

The Gluten-Free Insanity I'm Now Living In

I’m starting to understand why some families with a celiac person decide that the whole house should go gluten-free.

I always knew there was a remote (apparently not so remote) possibility that I had celiac disease. By following a gluten-free diet for my GI issues for the past three years, I figured I was following all the important precautions, and if I did happen to be celiac I was fine either way. Sure, a crumb slipped here or there, or I’d bite into my son’s mac n cheese noodle to see if it was done cooking and then spit it out. Sometimes I used vanilla extract without knowing 100% if it was gluten-free. I really didn’t think these little things mattered. I assumed that I had gluten-intolerance and not full-blown celiac disease, and so no need to be crazy with my anti-gluten lifestyle.

Now, thanks to my recent diagnosis, I know that those little things added up and were messing up my body and making me sick. And people, this gluten stuff is crazy. It’s EVERYWHERE and spreads like WILDFIRE.

Let me share a few of the crazy things going on around here right now:

  • I can no longer use plastic containers for mixing, cooking, serving, or storage if they have previously had gluten in them. (They scratch and hold gluten.)
  • I can no longer use plastic kitchen utensils if they have previously touched gluten. (They also scratch and hold gluten.)
  • I can no longer use non-stick pans if they have touched gluten. (Same deal. Scratches and hold gluten.)
  • I can no longer use our colander because gluten gets stuck in the holes, and I am supposed to go buy a new one exclusively for me.
  • If I touch my child’s gluten-filled waffle in the morning, I have to immediately wash my hands so I don’t cross-contaminate my own food or by chance put my fingers in my mouth.
  • I have to have my own dedicated toaster that doesn’t have any gluten items in it.
  • We have to buy a new cutting board (so sad, I LOVE our fancy wooden cutting board!) and new wooden mixing spoons.
  • I have to make sure my shampoo is gluten-free or else pay special attention to never open my mouth in the shower while washing my hair.
  • I have to make sure my lotion is gluten-free so I don’t accidentally transfer it to my mouth.
  • I have to check all my medications and make sure they are not made with any gluten products.
  • The stickers on produce tend to have gluten in them. I have to try to select produce with no stickers or take a risk and scrub the produce before eating.
  • I can no longer lick envelopes. The glue often has gluten in it.

Everything I put in my mouth is a possible attack on my body, and I have to scrutinize and consider every possible source of gluten on the thing about to touch my lips.

It’s insane, people. Insane.

I can’t lie. I had a slight adult pity party tantrum last night. Like kinda lost it and sobbed to Dave. “I have this chronic autoimmune disease, I’m going to have it for the rest of my life, and I know I was already eating gluten-free but I am NOT ok with this, and now I feel like I can never eat at a friend’s house or a restaurant again because I might get sick, and I can’t take chances because it is a health risk, and previously it was kind of like oh, I shouldn’t eat gluten because it doesn’t make me feel good, but now I CAN’T eat gluten and it’s for FOREVER and our kids are at risk and I’m paranoid even in our own kitchen and I’m at risk for all these other autoimmune diseases and THIS SUCKS!!!”

Yeah, that was me last night. Tears pouring, nose clogged up, a pity party mess. I think I just needed a moment. A moment to let out all my insecurities and grieve. I never thought that if I was diagnosed that I would need to grieve. I didn’t think it’d affect me that much. But I was wrong. The diagnosis has been an emotional blow.


Honestly, since being way more careful about cross-contamination the last few days (although I still use a lot of cross-contaminated kitchen items because I haven’t bought new ones yet), I feel SO MUCH BETTER. Not 100%. Still a little nausea here or there, maybe a slight amount of bloating. Still in the bathroom more than normal. But SO MUCH BETTER. I’m starting to think that all of my issues over the last several months haven’t been another food issue, as I was concerned about, but rather just cross-contamination of gluten. And I’m so glad and relieved to have the pain dissipating and to know that I probably have an answer to all my recent issues.

Last night Dave said he’s just relieved to finally know what’s wrong with me. And I know he’s totally right. It’s a relief and a blessing to finally know.

Wednesday, June 4, 2014

Celiac Diagnosis

Yesterday I found out that there is approximately a 95% likelihood that I have celiac disease.

When I got the call from the nurse reporting my lab results, at first I was close to elated. I felt so validated. All my gluten-free eating over the last three years had actually been a smart choice.

Then the reality of it all came crashing down on me. Celiac disease. Disease. I have a disease. An autoimmune disorder, to be exact. My body hurts itself. I’m at risk for a ton of other health issues. I can no longer just say, “Oh, that’s probably safe to eat, I’ll be fine.” I can no longer base whether or not it’s ok to eat something on whether I feel sick afterward. If it has gluten in it, then it’s hurting me. Whether I feel it or not. Period.

Now I’m overwhelmed.

Now, I guess I cannot claim 100% that I actually have it. I’ve done a ton of reading about the blood test that was performed, and there is supposedly a 5% chance that I don’t have celiac disease and that the test gave a false positive. But the people who get false positives for the blood tests typically have another autoimmune disorder which affects the blood results. And as far as I know, I do not have another autoimmune disorder. (At least I hope not…)

To knock out that 5% chance that I do not have celiac disease, I am supposed to get an intestinal biopsy. But there are some major issues with this. First, obviously, it would cost money. Yuck. Second, I am currently on a gluten-free diet, which makes it very unlikely that the results of the intestinal biopsy would come back positive. (The blood test actually shouldn’t have come back positive, either, but more on that in a moment.) So, prior to having the biopsy performed, I would have to eat a ton of gluten, daily, for at least six weeks prior to the biopsy (based on various sources I’ve read).

Just shoot me now.

Seriously, gluten makes me so sick. Some friends aren’t aware how sick I was prior to going gluten-free, but it wasn’t pretty. Daily severe abdominal bloating. Cramping. Stabbing pains. Diarrhea four to five times a day (no exaggeration) alternated with days of constipation. Chicken bumps on the backs of my arms - a condition I’d had as long as I could ever remember that disappeared when I stopped eating gluten.

And you want me to go back to this for a minimum of six weeks?? You’ve GOT to be kidding me.

I just don’t know what I’m going to do.

And to discuss another very interesting issue, I was supposedly eating gluten-free when they performed the blood test. I’d been eating gluten-free for THREE YEARS. I told my allergist that the test would be negative even if I had the disease since I was eating gluten-free. And that’s supposed to be true, if you’re doing a good job with the diet. He said he wanted to run the test anyway. And whattayaknow. Positive for celiac disease. Apparently the guy knew what he was talking about.

What this means is that I’m apparently eating a significant amount of gluten from somewhere. It must be hidden in items that I’m not catching, or I’m getting cross-contaminated. Cross-contamination is very likely, because I honestly haven’t worried about it much. A crumb here, a “contaminated” spoon there, eh, I figured it didn’t matter. I didn’t seem to get sick from it, so it I assumed it wasn’t hurting me.

And now that’s all out the window. It is hurting me. My blood antibodies are elevated, so it’s hurting me. Even if I don’t get noticeably sick after eating gluten, if I have celiac disease, it’s hurting me. So much pressure. So much to learn. So much to investigate and be aware of. So overwhelming.

I don’t know what to do next. I don’t have a doctor seeing me for GI problems or celiac disease. This whole discovery was somewhat of a fluke; I was at the allergist to get tested for an avocado allergy and mentioned my gluten issues. When I got the call with the lab results yesterday, the nurse said she’d send the results to my primary care doctor and that I should go do some reading at I was like, really? That’s it? “You most likely have this autoimmune disease, here’s a website, we’ll tell your doctor, have a nice day.” For real? What does that even mean? Is someone from the doctor going to call me? Do I call them? Do I need to go see a specialist? What are the next steps? Help?

So...yeah. That’s where I’m at. Gluten-free diet of three years failed. 95% likelihood of lifelong autoimmune disease. Absolutely no gluten whatsoever for the rest of my life. Gotta get the kids tested, because it’s genetic. Feeling somewhat alone, because only 1 in 133 people has this disease, and up to 90% of them are undiagnosed.


  • I have an answer. I have a diagnosis. My gluten-free eating has not been in vain.
  • I am aware and can get my kids tested, and if they have it we can do early intervention so they won’t have to face as many health problems.
  • I actually know several people with diagnosed celiac disease who live nearby to me. Yay for support.
  • It’s a totally manageable disease without medication, requiring only a dietary change. (A somewhat difficult dietary change, but one that’s getting much easier as more people jump on the gluten-free bandwagon.)

Things could be much, much worse. This really won’t be that bad, especially since I’ve been eating (supposedly) gluten-free for three years now. I just need to be a little more strict about watching what I eat. Ultimately, it just feels weird to have a new label, and to know that I actually have to be cautious so I don’t cause long-term damage to my body. It’s no longer simply avoiding GI problems, but now it’s also managing a disease. It’s just weird.

Alright well I suppose that ends my ramblings on this for today. I’m sure you’ll be hearing more about this. I’ll have to restart that gluten-free blog post series I attempted to begin over a year ago.   It will have a lot more value to me now.