Celiac Awareness Month: Trending: with Celiac, gluten, and a toddler

It is Celiac Awareness Month. Celiac Awareness Month is an event held throughout the United States each May and is supported by the National Foundation for Celiac Awareness (and other relevant organizations) and for this reason I share my journey to learning about Celiac Disease.

It has been two and a half years since I wrote a blog entry. It feels like both a very long and short time. Today is May 1. The date is significant because it marks the beginning of Celiac Awareness Month.  You will not see the word “Celiac” previously in this blog because it was not even a blip on my radar before two weeks ago.

Besides watching Elizabeth Hasseleback, controversial and former co-host of The View, confidently refuse certain baked goods on air, I never knew of anyone who had this condition. What I know is that gluten has become a buzz word during the last few years. I have a few friends and family members who have chosen to go gluten-free for “health reasons” or as a new dieting regime.  Admittedly, I didn't take this seemingly odd preference all that seriously except to revel in how annoying it was to eat with them. Sorry guys.

It was two weeks ago when my youngest son, who just turned three, was diagnosed with Celiac Disease. He has been sick for a while.  My family and I did not know what was causing his incessant diarrhea and related symptoms. I was at my wits-end trying to find out what going on. Why did he have a bowel movement after eating and drinking anything – sometimes up to 10 times a day? Why was he always getting stomach bugs? What was going on with my sweet little boy?

My baby

After surmising that food allergies may be to blame, I took him to an allergist. Tests did confirm a couple of allergies, including one to apples and to dust mites. The allergist also tested him for milk and wheat allergies, which came back normal. I took him off apples and apple products (which are in everything by the way) but to my chagrin, there was no improvement.

Still not knowing what to do but knowing that I needed to do something, I decided to eliminate ­­dairy because some internet “experts” opined that dairy is linked to ear infections. My son has had many ear infections, requiring tubes along with the gastrointestinal issues. I figured ... maybe.  Again, not much seemed to change.

Our once voracious eater was no longer interested in eating anything. He would play at the dinner table with his beloved Thomas the Train engines rather than eat. It was his older, skinny brother whose dining habits worried us, not Mr. Boy. Mr. Boy was a tank.  His dad referred to him as

Bam Bam. But Bam Bam was starting to lose weight.  He was often tired and his constant movements resulted in brutal diaper rashes that would cause him to scream out in pain while being changed.

Nothing helped. We were at a loss. Me. His dad. His Nana. His daycare provider.

When he turned three earlier this month, I took him for his annual exam and brought up the issue once again. Our pediatrician said that he had Toddler’s Diarrhea, which may have been causing the issues. She asked about his diet and I began to list his favorite foods: waffles, pancakes, peanut butter and jelly sandwiches, and it dawned on me – gluten. Damn-it. Gluten, that trendy little bugger. It was one of those "come to whomever" moments. How could I have not thought of this earlier!?  I should have known.

Immediately, I stopped the medical student who was training with our pediatrician and excitedly shared my revelation. I asked her to tell the doctor the connection I made. The doctor came back into the exam room and said that she had the very same suspicion, but thought it was unlikely. She would run some tests.  A few days later, the blood tests were in … Celiac Disease.

While in a daze, I wrote down what the doctor was telling me on the phone - "Celiac", "gluten", "small intestine", "endoscopy" ... "Children's Hospital" - while The Boy ate something that may or may not have had gluten in it in the kitchen with the rest of the family.

She explained that she was going to schedule an appointment with the Chief of Celiac at Boston Children’s Hospital and less than a week later (this past Tuesday), we had our appointment.The specialist confirmed that Celiac is to blame for many of my son’s health issues and in order to confirm the diagnosis, he would need to do a biopsy.

This surgery will happen in the next week or two and then we will forge full-speed ahead into a gluten-free lifestyle – for The Boy and likely for the rest of the family as well.

We have already started him on a GF diet, although we were advised to keep some gluten in his diet, so that the endoscopy can do what it needs to do and confirm the disease. It is so counter-intuitive to knowingly give a child, your baby; your baby who has been suffering for so long, something that we know is hurting him. But … doctor’s orders.

As soon as I learned of my son's Celiac, I did what people do I started researching the topic online. I came across a tweet from the National Association for Celiac Awareness and that in acknowledgement of Celiac Awareness Month, they were looking for folks who want to blog about their experience, so here I am, two and a half years later.  Ready to embark on yet another journey.

California - Ten Years Later

Los Angeles has not changed much since I lived here ten years ago. I have have changed a lot since my (now) husband and I moved back east a decade ago. The Angelinos seem younger now - many of them were just kids when I, too, considered this city my new home. While it has been a lifetime ago when 90025 was my zip code, it feels like just yesterday.

I have visited Los Angeles only once since moving back. During this visit, my husband and I brought our son who was just over a year at the time. We spent Christmas on the westside with our family and friends. Like now, it was so great to be back. It has been less than three years since we moved, so we still felt relevant. We were newlyweds and new parents. It was fun taking our kid to the Santa Monica Pier on Christmas eve morning to ride the caraosel and hanging out on Christmas night drinking wine by the fire pit.

Add six more years to the equation, another kid, almost ten years of marriage, and we enter Los Angeles county early this week. We made the long anticipated trip back to our California, our westside, our Santa Monica and West Los Angeles.

My husband and I still *feel* like we live hear even though we know we are just "playing house" with the past. We rented an AirBNB and are staying in a cute flat in one our old haunts. Our kids are older now - only one left in diapers - and they are soaking *it* all in. Well, we are trying to *make* them fall in love with this place where mommy and daddy fell in love and began our lives together. In reality, they are more mesmerized by their gadgets and the fact they get to eat pancakes everyday.

Day three and we have barely left Santa Monica. With confidence, we traipse the kids around town showing them exciting landmarks like our old apartment, our old Ralph's grocery store, our favorite coffees shops and bars; you know, things that little boys love to explore when they are 3,000 miles from home.

Not much has changed. Santa Monica Place is new. There are more fancy vehicles parked in enclosed car dealerships. If possible, LA is even more health conscious than before with an superfluous amount of juice shops and pressed juice options adorning menus. Especially in Santa Monica there seems to be more people riding bikes. Billboards still adorn the streets promoting films and television programs. And, Angelinos wearing shorts and T-shirts walking alongside folks wearing jeans and puffy coats still pass by one another each comfortably temperate in the southern California sun.

While LA has not changed, we have changed a lot. Gone are the relatively care free days when our to-do lists included items like find a new brunch spot and bar. Traveling with young children require that we consistently wondering about things like when did we apply sunblock and which restaurants offer gluten-free options for our little Celiac?


Style and fashion have not changed much, but my fashion and style has reverted to east coast cool - lots of black, boots, sweaters. Our here I stick out like a sore thumb with folks hanging in their yoga pants, fashion sneakers, and white tops. Leaving Boston after the epic winter we have been having I do not think flip flops even floated into my consciousness - for me or for my kids. My husband is another story - he is a Californian at heart and brings his California cool everywhere even the frozen tundra of winter in Boston early 2015.

Regardless of the trends or the forecast, it is so great to be back - to be back home - or where we once called home and to be back in this perfectly odd city with our kids. It truly feels like we never left. This place will forever be our place and this is rad.

Celiac Awareness Month Heros

The National Foundation for Celiac Awareness (nfca) is featuring gluten-free bloggers in the final week of NFCA's Heroes Within Us campaign.  Check out these gluten-free bloggers and learn something new about Celiac Disease and gluten related diseases and sensitivities. campaign.www.CeliacCentral.org/awarenessmonth

Nothing like a good doctor

My son's doctor called earlier this week to confirm that his endoscopy and biopsies supported the recent Celiac Disease diagnosis. The staff at Boston Children's Hospital, the Celiac Clinic, and the Growth and Nutrition program have been truly amazing. The medical providers and support staff are incredibly knowledgeable, helpful, and supportive. The receptionists call us to book follow up appointments. They advise how us on how to position care for optimal insurance coverage without us having ask any questions. Not once have the doctors made us feel rushed or unimportant. Our doctor offered us his cell phone number and e-mail address. In thirty something years of life, I have never had a doctor give me his/her cell number or e-mail address.  Am I dreaming? Is this really 2014? Doctors do this? Boston Children's Hospital is best practices in motion and we are incredibly grateful.

The next step is for us to attend the Celiac nutrition class offered monthly by the Growth and Nutrition unit. It is here that we will learn about all of the intricacies of Celiac and a gluten-free diet. In the meantime, we have been making it work and it has not been half bad. Well, last night's gluten-free pizza take out was half bad. Otherwise, it has been going well.

Voila! It's a cookie and I made it without using gluten!

Success. My very first gluten-free baking experiment. No blending. No boxes. And, not a lot of chemistry. This is how last night's baking experiment began.

Enlarged to show decadence.

Thanks for the recipe. Yummy Mummy Kitchen. If you're interested, here's the recipe from Yummy Mummy Kitchen.

Didn't realize I need a BS in Chemistry to make gluten-free cookies.

Blending is apparently the “thing” in gluten-free baking. There exists an array of gluten-free flours that are best when blended together. Not all flours work well with one another, while others are the perfect complement to one another. There is arrowroot flour, almond flour, quinoa flour, sorghum flour, brown rice flour, and a bunch more. Who knew? Sometimes, I wish I did not know.

I thought that I would be all set with my 5lb impulse buy of almond flour. After purchasing this baby, I had visions of myself baking pizza dough, making bread, and perfecting my chocolate chip cookies for my son’s preschool class. Two weeks later, the bag remains unopened in my pantry.  

It is not that I don’t want to bake. It is that every time I get ready to try a gluten-free baked good recipe, I learn of one more obscure gluten-free ingredient that the recipes requires in order to be edible, like xanthum gum. 

What the hell is xanthum gum? It sounds intimidatingly scientific. I feel uncomfortable even using the word. I don’t know enough about chemistry to use xanthum gum in a sentence. Well, I am starting to. One needs xantham gum or a tapioca paste in order to help bind ingredients in order to optimize GF baking.

And, the almond flour? Well, apparently one is advised to blend almond flour with coconut flour. Why? I don’t really know. It just appears to be what people do and what people recommend.There are a myriad of ingredients – of which I am completely unfamiliar – required to bake something gluten-free from scratch, and it is a little much - for me any way. 

I love to cook, but cooking is forgiving. It is less of a science and more of an art. This how I approach cooking anyway. I can mix and match. I can improvise. I can make a meal out of 5 ingredients.  This does not appear to be an option for gluten-free baking.  Not to mention, gluten-free grocery items are also super expensive. 

I still have not baked anything from scratch because I still don’t have the basic "toolkit" of GF ingredients, which includes sorghum flour, coconut flour, and xanthum gum and some sort of yeast I have never heard of. It is actually sort of frustrating. 

I have used a variety of mixes to make GF brownies, muffins, and such. The results have been mixed. The baked goods came out “OK”, not great, but not terrible. The only thing that actually came out really well was the mixed berry muffins I made using the King Arthur Muffin Mix.

I would really like to bake something - from scratch - tonight. It is a “school night” though, so I am not sure I will have a whole lot of extra time or patience; and I certainly don’t have time to hit Whole Foods for the third time in three days.  

I’ll see what I can whip up. I was never really good at science, but I can attempt to create something out of nothing, which will be a success in and of itself.

Cheers.

What am I going to do with all of this almond flour?

In acknowledgement of Celiac Awareness Month and in support of my three-year old son who was recently diagnosed, I decided to take a pledge of going gluten-free for the month.  
  

I have been impressed by the wide-array of support which has contributed to making this journey fairly easy. Gluten-free options avail at groceries stores and at restaurants. For the most part, servers have been knowledgeable and helpful – no one has made me feel like a high-maintenance, trend-following customer when I ask about gluten-free options.

I recently bought a 5lbs bag of almond flour and I have no idea what do with it.  I keep spending money on gluten-free groceries because I don’t know what else to do. Somehow, I think that buying all of this shit is going to help heal him, help soothe him, to help soothe me, and provide me penance for not catching “it” sooner.

The specialists explained that we needed to re-introduce gluten into my son’s diet before the endoscopy and biopsies.  My husband and I have had a hard time doing this, especially since we have seen a noticeable and positive difference in our son’s health since he has gone gluten-free.   

We decided that once the appointment was a week away, we would re-introduce the gluten and give him on gluten filled item each day.  The surgery was today.  According to the doctor who performed the procedures, the cillia growth was not conclusive. She decided to conduct seven biopsies to help enhance the diagnosis. I am now fearful that we did not give him enough gluten and we will have to go through this again. The saga continues and we will know more in about a week. In the meantime, we are back to leading as close to a gluten-free lifestyle as possible.

I have been 100% gluten-free since May 1, that is, until this past weekend. I gave myself an “out” for three reasons – 1) it was my birthday/mother’s day 2) I ran my first 5K 3) my son has been eating some gluten this week in advance of his procedure.

 My first non-gluten free items were not mind blowing in any way. It was an entirely impulsive choice to even go off the diet. It was Mother’s Day (Sunday) and I was running my first road race. I have never done anything like this before and did not realize how much of a big to-do it would be. Since the race was for charity, there were tons of donations made by local restaurants. I ate about 1/8 of scone before the race and a half of hot dog after the race.  I split the hot dog with my son. To him it was just another hot dog, yet to me it was an example of me giving in, giving up, and sacrificing my integrity.  For what? Free food? Instead of feeling satiated by the gluten bites, I felt shame and guilt. 

I don’t have celiac disease. My gluten-free crusade is optional.  It is for a month. I did not even last two full weeks before having a lapse. Celiacs don’t have a choice. My son does not have a choice.