Saturday, July 19, 2014

The Perks of a Celiac Diagnosis

Yes, this is another post on celiac disease. I realize I’m writing about this a lot right now, but honestly, it’s because it’s somewhat taken over my life and it’s now something I feel passionate about. It fascinates me and frightens me and bewilders me and challenges me. Sometimes I feel defeated, sometimes I feel empowered. When I’m feeling good, I want to jump for joy and shout to everyone that I’ve got this conquered. Celiac disease has nothing on me! But then something goes wrong and I get sick. And suddenly I want to punch the wall in anger and I find myself unable concentrate on anything else in life, not just because of the effects gluten has on my brain but because I’m scrambling to figure out where I went wrong and how the disease managed to score against me again.

For today’s excerpt of my never-ending rambling regarding celiac disease, I want to share with you the perks of a celiac diagnosis.

No, the perks do not include “an excuse to participate in the gluten-free diet fad” nor do they include “an easy-to-manage solution through a gluten-free diet.” I have many words I could say on both of those items. Neither of them fall anywhere close to qualifying as a perk. But I’ll save those explanations for another day.

Rather, here are the perks I’ve come to appreciate:

1. I got my brain back.

I just realized this the other day, and this is by far the best outcome I’ve received from my celiac diagnosis. For many, many months...perhaps years...I’ve had issues putting what I’m thinking into words. From what I can remember, I never had this problem prior to pregnancies and gluten issues (which both plummeted into my life simultaneously and are very likely related). But I increasingly noticed that I was struggling to verbalize what I was thinking. I couldn’t remember simple words, words such as “table” or “sofa”. I struggled to make my sentences flow. The worst was when I would have to give directions or state the location of something. For example, Dave would ask me where I had left the laptop. I would know and would see it immediately in my head, laying on the floor next to my bedstand. But to be able to verbalize that to him felt nearly impossible. I would have to stop everything I was doing and focus 100% on how to communicate to him the location of the laptop. “It is…” that place up there...”upstairs”....laying down on that thing... “on the floor”...positional word, what is the positional word…”next to”...that thing next to the place where I sleep, what’s it called…”the bedstand.”

I know this sounds absolutely crazy. But that is really the process I would go through, every time I got asked a similar question. Speaking, about anything, could be very hard. I had no idea what the reason was for my inability to put my thoughts into words, but I had accepted it as who I was and did everything I could to not let others know about it.  I wanted to appear competent.  I often thought it was just a concentration issue and if I would just focus more instead of being so scattered, maybe I would talk well more easily.  It frustrated me and sometimes concerned me. It made me feel ridiculous and embarrassed. And I kept it to myself. I guess I didn’t realize anything was wrong because I know I had focusing and attention issues, and I figured it was related to that.

Now, since my celiac diagnosis, and hence eliminating all sources of trace gluten and gluten-cross contamination in our house, I can suddenly communicate again. Friends, it is AMAZING. I cannot even explain to you how wonderful it is to think something in my head and then be able to speak it out loud without feeling like I’m trying to shove my brain through thick goopy syrup in order to find the right words. And I am absolutely blown away that I was experiencing such neurological issues simply from trace amounts of gluten. Remember, I was eating completely gluten-free, and had been for three years, when I got this diagnosis last month. Any symptoms I was experiencing were from accidental ingestion. Last night I told a friend about the issues I’d been experiencing with being able to verbalize my thoughts, and her eyes were wide and she replied that it sounded similar to what she’s seen in people with brain injuries. That solidified the seriousness of this for me even more. My brain isn’t something I want to mess around with. And I am SO GRATEFUL that I got it back.

2. Renewed Health

This one is probably a given.  I feel better.  I’m no longer experiencing intense daily fatigue. I’m no longer getting a new cold every other week. (Yes, I previously seriously got a new cold every other week. Now I haven’t had one since my diagnosis.) I’m no longer getting canker sores. My anxiety and ADD-type symptoms have lessened quite a bit. I’m starting to be able to concentrate at work. As long as I haven’t been previously glutened, I’m not bloated and I have no abdominal pain or nausea. (When I do get glutened, it seems even more intense now. But that will be another post.) I’m not running to the bathroom in sprints at random moments. Overall, it’s a complete 180 compared to prior to my diagnosis.

3. A Support System and Place to Belong

Perk #3 is all the supportive people I’ve met and the feeling that I “belong” somewhere with my gluten issues, resulting health problems, and need for a strict gluten-free lifestyle. I’ve joined online support groups, started reading celiac blogs, and have learned such an incredible amount about it all. I, in a way, feel like a member of a new club, and the members of this club are rooting for me and helping me get my life back. I feel validated and understood by these people. It’s so motivating.

4. A New Sense of Self-Control with Food

This perk started somewhat even before my diagnosis, back when I started eating gluten-free, but it’s now been solidified even more since needing to follow such a strict gluten-free lifestyle knowing I have celiac disease. I have now learned to say “NO” to foods that I know would taste absolutely delicious. I’ve learned to walk away from snacks, drinks, even entire meals, if I think there is even a remote chance that those foods will damage my body. I’ve learned to read labels. I’ve learned about cross-contamination, manufacturing practices, GMO, organic, and certification processes. I know SO MUCH MORE about foods and what I put in my body, and I actually feel in control of it, rather than led by my cravings. Yes, sometimes I still feel downtrodden. I miss certain items. I’ve even been known to cry over it occasionally, when I’m feeling very frustrated and left out of the “normal” world where people get to eat together while they socialize. I can still remember the taste of Oreo cookies, cinnamon butter and rolls from Texas Roadhouse, and Pizza Hut pizza. I still wish I could easily go to my friends’ houses for dinner and partake in whatever dessert they have to offer. But I know that I can’t, I know it’s not safe, and I know I have the ability to say no. It’s empowering.

5. A New Understanding of My Body

Since my diagnosis, I have started to pick up on many of my body’s quirks. Perhaps this is because I’ve now had the opportunity to feel like a normal, healthy person for a short bit, and so when things go awry again I’m able to pick out what is wrong and what was likely to have caused it. Based on my symptoms, I can tell when I’m dehydrated, when I’ve probably consumed gluten, and when I’ve probably consumed soy. I know what it means to feel good now, which means I better understand what it means to feel bad. Feeling sick had become my normal prior to my diagnosis, and so I really had nothing to compare it to in order to figure out what was causing what. But now I have had at least brief times of normalcy and health, and so I know what to look for as a signal that something isn’t right.


These are the perks that have stood out the most to me. There are many others I could list, but these are the ones that have struck me as most significant. I asked a gluten-free Facebook group what they considered to be the perks of a celiac diagnosis, and here were the most common replies:

  • No more symptoms (symptoms listed included swollen legs, pins and needles in legs, night terrors, migraines, exhaustion, searching for bathrooms everywhere they go, falling asleep while driving, asthma attacks, eczema breakouts, bloating, brain fog)
  • Newly diagnosed (and hence malnourished) children starting to grow and thrive
  • Being healthy again
  • Being able to live life again
  • Easier to say no to junk food and fast food
  • Knowing you’re not damaging your body
  • Just knowing what’s wrong
  • Knowing you’re not the only one
  • No more people and doctors acting like you’re a hypochondriac
  • A deeper sense of empathy and compassion for others with disabilities or illnesses
  • Learning to cook and eat healthier foods

We all have different experiences, different symptoms, and different levels of sensitivity. But I was excited to see how many people could look on the positive side of things and realize that there ARE some perks to an celiac diagnosis, as much as it makes your life difficult at the same time.  So kudos to all of us.  We got this. :)


Related blog posts:
Celiac Diagnosis
The Gluten-Free Insanity I'm Now Living In
To My Family and Friends - A Letter and Guide from Your Celiac




Friday, July 11, 2014

And then there was soy.

When I got my celiac diagnosis about a month ago, part of me was excited because I thought I had an answer to why I’d been feeling so sick for months. I suddenly “knew” that all my sickness had been due to hidden gluten in my diet, not some other food item as I had been worried.

I dramatically increased my efforts at avoiding hidden gluten and cross-contamination, and meanwhile I rushed out to the store and filled my cart with gluten-free pretzels, gluten-free granola bars, and other similar snacks, as a way of making myself feeling better about my diagnosis.

The extreme fatigue I’d been experiencing started to dissipate. I stopped feeling nauseous for the first time in months. But to my shock, in the days following my diagnosis and my gluten-free shopping trips, my other GI symptoms weren’t any better. In fact, they almost seemed worse. Tons of cramping and abdominal pain among other symptoms.

Now, I had had issues with soy in the past, and I had been wondering if I had soy issues for months, but for some reason I decided to erase these experiences from my memory. Probably two years ago I switched to using coconut aminos instead of gluten-free soy sauce because the gluten-free soy sauce made me as sick as regular (gluten-filled) soy sauce. Also, gluten-free pretzels had made me very sick in the past. But with my new diagnosis, I convinced myself that those pretzels must not have been certified gluten-free (meeting a very low threshold for gluten) and so must have contained trace gluten (which clearly made me sick), and so as long as I stuck with certified gluten-free pretzels I should be fine. Right?

Wrong.

The gluten-free pretzels knocked me out. I lived on the toilet for 24 hours following the two times I ate them and then I gave them away to a fellow celiac friend.

I did all kinds of reading and studying the foods I ate. I hoped it was something else. Maybe it was just GMO soy. Maybe the pretzels contained something else. But all my reading led to one consensus: soy did not settle well with me. At all. I was eating products with non-GMO soy that were certified gluten-free and I was still sick. Even products containing soy lecithin, which supposedly shouldn’t bother “most” people with soy issues, left my intestines rumbling. I just couldn’t believe it. But as someone told me yesterday, I should know by now that I am not “most” people, and so I should believe it. Ugh.

I didn’t want to admit that soy was an issue, because it meant that I couldn’t eat about 75% of the gluten-free items I’d filled my pantry with. I was so frustrated. But then Dave told me (for the millionth time) that I really needed to get my health back and go as extreme as that required. I knew he was right. So, alas, I listened to his advice finally, and I said adios to the soy.

The GI problems stopped afterward. It really was nice. And now, I’m starting to figure my body out. I’m starting to notice that when I ingest soy (as I’ve accidentally done since giving it up), it’s a short-lived issue. I get really sick with cramping and bloating, then it exits my body, and I’m done. No fatigue, nausea, anxiety, depression, or short-temperedness. Within 24 hours it’s usually over. (This is in contrast to gluten which WIPES ME OUT. But that’s a long post for another day.)

There’s always the possibility that I react so strongly to soy because my intestine is damaged from gluten and therefore has problems digesting the soy. This does happen to celiacs. More frequently it’s lactose intolerance that is the issue, but other intolerances can happen as well. So there’s always the slight chance that if I stay super duper gluten-free for a long time, and my intestine heals, then I may be able to eat some soy again. But I know I shouldn’t get my hopes up. I should adapt a soy-free lifestyle and assume it’s for the long haul. Because such is my body and life.

Goodbye soy. And hopefully, hello health.

Tuesday, July 1, 2014

31-Day Water Challenge

Last night I read an article about a woman who drank almost a gallon of water (3 liters) per day for a month and experienced amazing beneficial effects.  Many ailments she'd been struggling with disappeared and her face started to look much younger.  Her before and after pictures looked dramatically different.  Now, I am no fool and realize that her pictures could have been easily enhanced by lighting and digital effects (in fact, the pictures could have been taken on the same day), but this article still got me thinking.

I have been struggling with a lot of health issues lately (in addition to my celiac symptoms) that are caused by dehydration or could be alleviated with more water intake.  These include:

severe dry eye syndrome
dry, chalky mouth
dry skin
headaches
bloating

I KNOW I need to drink more water.  I am absolutely horrible at it.  I could easily go all day just sipping on coffee, with only a small glass of water in the morning and at night when I brush my teeth.  Water just isn't something I desire to drink.  It's boring.  I like taste.  But I'm also pretty darn sure that I'm very dehydrated. So I should probably fix that.

I've decided to take on a 31-day water challenge.  I'm going to drink at least the recommended amount of water daily, if not more, and see what happens.  Perhaps (hopefully!) I'll see many of the above-mentioned issues disappear and I'll want to continue with the hydrated lifestyle after the 31 days are over.  It just so happened that I decided to start this on July 1st, so I'll do the challenge throughout the month of July.

I'm using a free iPhone app to help me along on my journey.  It's called Plant Nanny.  It makes drinking water fun, because I get to grow plants as I drink water, and anyone who knows me well knows I like plants. :) Based on my body weight and activity level, the app says I need at least 77 oz of water per day, so that will be my goal.  That's about 0.6 gallons.  I'm going to carry my Nalgene around and see what I can do.

I'll provide updates throughout the month to let you know if any changes occur when I actually adequately hydrate myself.  Exciting times ahead. :)

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. :)

Love,
Kara