The Difference Between Doing it Right and Doing it Wrong

Part of me questions if the title of this post is misleading. Depending on who you are, and what your reasons for eating gluten free food are ultimately determine that. I am writing this from the perspective of an individual with celiac disease. Ultimately, this applies to anyone who requires a strict gluten free diet out of medical necessity. Ultimately, I wish all gluten free items were "safe" for everyone eating gluten free items whether they have celiac disease or not.

It was some time ago that Panera Bread announced they were coming out with “gluten conscious” menu items. This included a triple chocolate cookie with walnuts and a monster cookie with nuts. They didn’t intend to take any steps to prevent cross contamination, and they were very clear that they didn’t recommend these items for those with celiac disease or a severe gluten sensitivity. Despite the fact that these items were made in a dedicated facility (I heard this at the time, but I've been unable to confirm it today), they were going to store them on the racks with all of their other cookies. I never quite understood why the only items they would feature would be cookies considering they’re known for their bagels, but that is beside the point. If they were taking all of the effort to have them done in a gluten free facility, why couldn’t they simply individually wrap them to avoid any chance of cross contamination so those with celiac disease could enjoy them.  

Then, several months ago, Starbucks began test marketing breakfast sandwiches in select markets. The sandwich would be in a special parchment bag that allowed staff to bake the sandwich without contaminating it. A few days ago, they announced their Gluten-Free Smoked Canadian Bacon & Egg Sandwich will be available nationwide (although it is not necessarily available at all locations). I’ve already heard a few accounts of staff misunderstanding and unwrapping the sandwich to bake it. It’s unfortunate that those with celiac disease need to do their due diligence to make sure they know it’s wrong if they receive an unwrapped sandwich. With that being said, it’s exciting that there is a safe option and that they took the time to ensure it could be done right.

Starbucks Gluten-Free Smoked Canadian Bacon & Egg Sandwich Info

This situation reminds me of when Chuck E. Cheese's came out with a gluten free pizza around the same time as Domino’s did. The difference between the two was huge. Chuck E Cheese's was going to bake theirs in a special bag, and deliver it to your table with an individually wrapped pizza cutter to ensure staff did not contaminate the pizza. Domino’s wasn’t going to take any steps to prevent cross contamination, and they clearly stated this on their website. The problem with it was that if you called to order the pizza, they didn’t always give the “required” disclaimer. Shortly after it was announced, I called several locations throughout the United States, and they all seemed very confused about what to say, and it took me asking many questions for several of them to go get the information they were supposed to disclose which is basically what this picture says:

Domino's gluten free crust disclaimer

Ultimately, despite the potential for things going wrong if the sandwich or pizza are unwrapped in error, Starbuck's and Chuck E.Cheese's are doing things right. They have taken steps to ensure those with celiac disease can safely eat their items. Those steps ensure safety from start to finish rather than starting with a safe product and then making it unsafe along the way.

My hope is that the companies doing things right will thrive and other companies will see this. I realize that those with celiac disease are a small percentage of the population, but we are ultimately the customer base. Those who choose to eat gluten free because it's healthier are unlikely to eat pizza or a breakfast sandwich in the first place, and those who choose it as a fad diet aren't going to be long term customers. If the goal is to build a long term customer base, then they need to make things for those who will require the diet for life. Eventually, the fad will die out, and there won't be anyone left to purchase their products unless those who require a gluten free diet are able to consume the item.

Gluten Free Baby Oatmeal Cereal

A couple months ago, I wrote a post titled Baby Without Gluten, and one of my questions was whether or not there was a gluten free baby oatmeal cereal. At the time I did the research, I couldn’t find one that used purity protocol oats. (Click here for more information about what purity protocol oats are.)  

Imagine my surprise when I was walking through the baby food aisle and saw this.

Gerber Gluten Free Oatmeal Cereal

I keep up with news about new gluten free products really well, so I was surprised I hadn't heard anything about this. I snapped this photo, and went home and posted a question on their facebook page to find out where they sourced their oats. Frustration set in when they advised me to call them to ask.

I prefer to have things in writing, so rather than calling them, I sent them an email. I was shocked when their response included a link to their website stating they are using purity protocol oats along with additional information detailing the process. I couldn't believe the care they were taking to ensure the oats they were using were truly gluten free.

I took this screen grab for fear that they would take down the page or that I’d find out that it was all a big lie, and they weren’t actually using purity protocol oats.

In addition to finding this out about Gerber, I also contacted Happy Baby after seeing they had baby food pouches labeled as gluten free that contained oats.

Imagine my surprise when they responded that they use purity protocol oats as well.

It’s incredibly encouraging to me to see larger companies doing things right. I still consider Cheerios to be unsafe. You can read my thoughts on that here. Despite writing that well over a year ago, my thoughts haven’t changed, and neither have their practices. In my opinion, General Mills should look at what Gerber is doing to see that it can be done. I realize it would be a completely different scale, but it is possible in my opinion.

Oh, and just in case anyone is wondering... my baby loves his gluten free oatmeal. Thanks Gerber!

Why to Keep a Baby Gluten Free

Gluten free baby puffs

I'm often asked why I’m keeping my baby gluten free right now. I always explain that I don’t recommend it for everyone, but there are two main reasons:

1. I want to make sure if/when he has symptoms, we can know with more certainty that gluten is causing the issue.
2. It’s very hard to take care of children when you’re sick, and if I had gluten tracked all over the house, I would be sick all the time.

There have been multiple studies done on the introduction of gluten to babies, and it seems when you look at all of them, they’ve concluded one thing: no one really knows. When I was first diagnosed the most prominent study I heard of said that babies were less likely to develop celiac disease if you breastfed until one year AND introduced gluten between 4 and 6 months of age. That study stuck in my mind for years so I would be “ready” when I had a baby, and I could ensure I did everything I could to avoid them developing celiac disease. Unfortunately, study after study after that one contradicted it and the others. Ultimately, there doesn’t seem to be any general consensus on it.

As with everything with children, our plan is ever evolving, but right now, we are going to keep him gluten free until he can consume it on a regular basis outside our home AND be able to convey to us that something is wrong if there is. More than likely, that means he will be gluten free until he goes to preschool or kindergarten. It could happen sooner depending on circumstances, but that seems the most likely because he can get lunch at school so I never have to handle the gluten myself. It also fulfills the requirement of him consuming gluten on a regular basis because most school lunches contain gluten daily. He will need consistent gluten consumption in order for the tests to be accurate.

Despite what some people think we didn’t make this decision to be annoying. I remember the agony I went through being sick in school all the time, and if I can avoid as much of that for my child as possible, I’m going to do that.

Do I judge parents who introduce gluten right away, never at all, or do something completely different? Absolutely not! We’ve made the decision that works best for our family, and that won’t necessarily work for all families. We personally want medical proof for our child so it’s more likely he will be compliant with the diet when he gets older and can make more decisions on his own. We feel it’s likely he could “rebel” as a teenager if we simply decide to require a strict gluten free diet with no medical basis. Research shows first degree relatives of those with celiac disease have a 1 in 22 chance of developing it themselves. The odds aren’t exactly in his favor, but we don’t want to restrict his diet unnecessarily if we don’t have to.

I Could Have Died Yesterday

The title of this post sounds overly dramatic, and while it probably is, there is also a lot of truth to it. In additional to having celiac disease, I have additional food intolerances and food allergies. I actually have an anaphylactic reaction to nuts (peanuts and tree nuts) and I tested as allergic to wheat at the allergist. Yesterday, I had an anaphylactic reaction. It was the first time I had one that required epinephrine and a trip to the hospital. Generally, when I’ve been exposed to nuts, I have some difficulty breathing and my throat feels a little tight, but I’ve always been able to take a Benadryl and then I’m good. Wheat has never caused an anaphylactic reaction besides getting a rash when I touch it.

I honestly still have no idea what caused the reaction. It happened in the morning right after I woke, and I hadn’t eaten anything yet. I think that might be the scariest part of it all. I was exposed to something in my house, and I have no idea what. It could be a new allergy or it could be that someone brought food into the house even though we have a strict rule against it.

My baby woke up a little early, so I nursed him, and then I put him back down to sleep until it was time to get up. I was still tired, so I decided to nap on the twin bed in his room. When I woke up, I had a really itchy rash on my leg. I noticed something about my breathing was funny, but I didn’t think much of it. I brought him upstairs and put him in his play pen and went in my bedroom to call my husband so he was aware of what was going on. As I was talking to him, my breathing became more difficult. Something told me to eat something to make sure I at least had enough food energy in my body, so I grabbed a snack bar from my bedside table. By the last bite, it was almost impossible to actually swallow it. We were on the phone for a total of 24 minutes which included him driving halfway home after I begged him to come home. It honestly felt like we had been on the phone for an hour before he came home, but I’m sure I was panicking. Speaking of panicking, he kept telling me that it was unlikely I had been exposed to something, and I was probably having a panic attack (I suffer from pretty bad anxiety as well). I’m sure what I was “hearing” was not what he was saying, but I was incredibly scared and questioned if I should have just dialed 911, but I didn’t know what they would do with the baby if they had to take me in an ambulance. Hindsight being 20/20, I’m sure those situations happen all the time and they easily could have put the baby in the carrier and brought him with.

He got home, and I went to get off the bed to get dressed so we could leave, and I collapsed on the floor because I was so dizzy. I crawled to my closet and got dressed on the floor while he got the baby dressed. I could hardly stand up to get out to the car, and I don’t remember much besides him getting me out the door and leaning against the house so he could get the baby in the car. I wasn’t quite gasping for air, but I was wheezing really bad, so I was trying to breathe shallowly because the wheezing was scaring me. There were several instances during the drive where I thought I was for sure going to lose consciousness.

When we arrived at the ER, I just remember a lot of shouting from various people, and somehow getting into a wheelchair while I tried to answer, but my throat was so tight I couldn’t get words out. I also remember getting a glimpse of a clock when they got me back to the trauma room and being shocked that it had only been an hour since I originally called my husband to let him know something might be wrong. So much had happened so fast, and it seemed like it had been hours.

Once I was in the trauma room, several people began pulling my clothes off. I had a brief moment of feeling exposed as I sat in the wheelchair with nothing on the upper half of my body. They got me onto the bed and covered me with a gown rather than putting it on.

From that point, it was like watching a highlight reel rather than experiencing everything for a little while. I remember a nurse saying she was going to put in an IV. I remember a few of the sticky pads being put on me for an EKG. I remember a doctor asking me to open my mouth and say “aaah,” and then he immediately asked for a tongue depressor when no sound came out after I opened my mouth. I remember that same doctor saying there was a lot of swelling. I remember someone saying to get my pants off and several nurses struggling to pull them off me. I remember them saying they were going to give me epinephrine and the sting of it going in.

Shortly after the epinephrine, things got a little more clear, and I was experiencing more of it rather than just watching a highlight reel. The wheezing and swelling subsided fairly quickly, but then I started shaking. They reassured me that I was going to feel very jittery, and that was normal. I wanted to tell them that this wasn’t jitters, this was full on shaking. I felt like I was going to have a seizure or go into convulsions because the shaking was so bad and uncontrollable. Shortly after that, I began struggling to breathe again and I was gagging and I screamed that I was going to throw up. A nurse reassured me it was just the Benadryl that was causing the nausea. I didn’t even know they had given me Benadryl. I sat there with tears streaming down my face as I struggled once again to breathe and just waited to vomit. They quickly gave me an anti-nausea medication, and the nausea subsided without my ever vomiting.

About an hour after getting to the ER, most everything was back to “normal.” I was still shaking uncontrollably from the epinephrine, but otherwise everything was mostly ok. I was able to talk and breathe normally again. I was utterly exhausted, yet jarringly awake which is an unfortunate side effect of having epinephrine and benadryl at the same time.

They observed me for about another two hours to make sure I wasn’t going to have a relapse and then discharged me with a prescription for Prednisone to help ensure I didn’t have a relapse and instructed me to take it for five days because that is the length of time you are most at risk for a relapse from the same exposure. They also instructed me to take Benadryl three times a day for the same reason.

Most importantly, I got a prescription for an epi-pen so I could carry epinephrine with me again. I’ve been aware of my peanut allergy for almost 15 years. I was really good about always having epinephrine with me for at least five years, but whenever I was exposed to ingesting nuts, I would take Benadryl, and then I was ok. At that time of my life, I wasn’t making a lot of money and there were several instances where I didn’t have insurance, so a trip to the ER would have only happened in a dire emergency.  I eventually gave up on filling it because I didn’t feel it was that important. If I have any advice for anyone it is this: DON’T DO THAT. I’m not sure if I would have injected myself with the epi-pen at any point anyway, but had I passed out at home, my husband could have at least injected it while waiting for an ambulance.

The generic epi-pen I got from my pharmacy--far cheaper than the name brand version. 

It was an incredibly scary experience that I never want to experience again. Getting glutened is really really bad for me, but it just makes me feel like death. Gluten has never made me actually think I was going to die. I will definitely take my allergies more seriously from now on, and I”ll take the approach of “better safe than sorry” if I ever think I’m having a reaction again. I’d rather be at the ER and find out it’s anxiety than be at home and have it be anaphylaxis.