Thursday, March 23, 2017

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.

Saturday, March 18, 2017

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!

Wednesday, January 18, 2017

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.

Monday, January 16, 2017

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.

Sunday, September 18, 2016

Baby Without Gluten

When I look back at the last year, it’s almost as if I dropped off the face of the earth for the last year (mostly). Where have I been? I had a baby. Long story short (which will be explained in further detail later in another post)... I went through multiple tests to figure out why we were having trouble conceiving after two years of trying in the spring of 2015... which led to fertility treatments for unexplained infertility  in July of 2015... which resulted in me finding out I was pregnant on August 1, 2015... which led to a “normal” pregnancy including morning sickness until the day after Thanksgiving when I went to the ER with horrendous side and back pain... which led to a diagnosis of either kidney stones or hydronephrosis... which caused me to be on modified bed rest to keep the pain under control by laying only on my left side for over three months until I went into labor over four weeks early... and now I have a bouncing baby boy who is six months old. Whew! It’s been a year.

The American Academy of Pediatrics (AAP) now recommends solids are not introduced until six months of age (as opposed to the previous four month recommendation). Our pediatrician agrees with this recommendation, so we just got the go-ahead to start solid food at his check-up this week after six months of exclusively breastfeeding and pumping.

Normally, the first foods you would give a baby in the United States would be a type of grain cereal such as rice or oatmeal. I haven’t paid a lot of attention to the controversy concerning arsenic in rice, but I am aware of it enough that I knew what the pediatrician was referring to when she said she didn’t recommend rice cereal for this reason. My husband and I had discussed how we wanted to go about introducing gluten enough for me to realize oatmeal could be a problem. I didn’t want to sound like a complete fruitcake, so I held off on voicing my concerns regarding finding a gluten free baby oatmeal. There were a lot of things to consider, and I simply hadn’t done my research:
  1. Is there a gluten free baby oatmeal on the market?
  2. If so, do they use mechanically sorted oats or purity protocol oats?
  3. Could I make my own baby oatmeal if I couldn’t find a sufficient one already on the market?
  4. Are the baby oatmeals fortified or is it basically regular oats ground up?

After a lot of discussion, my husband and I had agreed that we would like to hold off on introducing gluten until the following criteria were met:
  1. He would be consuming enough on a daily basis that he would test positive for celiac disease if he has it.
  2. He was old enough to give us some indication something was wrong besides only fussiness and/or a concerning change in his diapers.
  3. He could consume this gluten outside of our home so it was less likely he would contaminate me.

We originally decided we wouldn’t be careful about cross contamination because we didn’t want him to grow up fearful of it if he never wound up with celiac disease. We may or may not change our minds on that, but for now, we have changed our mind and we’re going to be careful. We had some family friends staying with us and they have a daughter about the same age. She was introduced to solids while staying here, and our poor little guy wound up with a horrible eczema flare immediately after she began eating regular baby oatmeal. What started as a few minor eczema spots on his legs prior to the oatmeal exposure spread to cover his legs, back, and arms after the exposure. His chest and stomach were also starting to show signs of it. Rational thought tells me that it’s unlikely he could have been contaminated through oatmeal that someone else ate, but the timing seemed to be far too coincidental. They also tend to chew on the same toys, lay on the same blankets, etc, so it’s definitely not out of the realm of possibilities. After taking him to the doctor to confirm it was all just eczema (I'm not one to run to the doctor about everything, but rashes can be scary), she confirmed it was eczema, that it had flared, and we needed to change back any recent changes that could have triggered it. We asked our friends to stop feeding the oatmeal (at least in the house) because that was the only recent change in the home.

So for now, we’re going to be extra careful until we can do a controlled experiment to see what happens. I personally go back and forth between tolerating and not tolerating gluten free oats, so it’s possible he just can’t have oats as well.

We absolutely adore our pediatrician, and she was quite understanding of my fears. I’m actually allergic to wheat in addition to having celiac disease, so there is the potential that he’s allergic to wheat as well, and that reaction caused the eczema to flare, however she thought it was unlikely.

I know part of the reason for doing a cereal as a first food is because a baby’s iron stores start depleting around six months of age. In my research, I went to to see if I could find an alternative. I was actually quite relieved to see they also recommend various meats such as turkey, chicken, or beef because they are full of iron and nutrients. It actually listed the meat as a first food ahead of the grains. After grains, it said to try fruits like applesauce, pears, peaches, bananas, or other mashed/strained fruit or vegetables like cooked carrots, peas, and sweet potatoes.

At his check-up, we mentioned introducing a meat rather than a grain as the first food. We figured if he did well with that, then we’re going to move on to fruits and vegetables and skip over the grain entirely. We were prepared with a backup plan of starting with something like sweet potatoes to get him used to the idea of food in his mouth and then having a meat be the second or third item we try. She actually recommended starting with a few different fruits and veggies because babies rarely actually eat/swallow much of the food the first week. The original food is to get them used to the texture and having something else in their mouth. She said the texture of pureed meat can be kind of weird to a baby, and breastfed babies are still getting all of their nutrition from breastmilk anyway, so it wasn’t necessary to get the iron from food. She said once he was doing well with baby food, we could move on to trying meat.

We had discovered there are no gluten free baby oatmeals (at least that I could find), so that was not an option to give him an actual baby cereal. Our pediatrician confirmed that baby cereals are fortified, so it would not be the same thing to get gluten free oats and grind them into cereal for him.

Now we have a plan. We were gifted a couple different jars of baby food at my baby shower including sweet potatoes, prunes, pears, and carrots. We decided to start with the sweet potatoes. There was no particular reason for this besides it sounded good, and we definitely weren't going to start with prunes. Ha ha!

Baby's first food

I don’t know if our plan is the best way to do things or not, but we feel it is best for our family. We feel comfortable that we’ve done our due diligence with research and received the go ahead from the pediatrician. It also makes me feel better to know that initial food for babies is more about exploration than it is about nutrition.

Saturday, September 10, 2016

Reasons to get a Definitive Diagnosis

It’s no secret there is growing mainstream interest/curiosity in the gluten-free diet/trend. I’ve been noticing a lot of people starting the gluten-free diet without knowing the potential pitfalls of doing so without having proper testing done first. Many later want some definitive answers about their failing health.

In order to get the best possible answers, it’s best to follow a certain diagnostic protocol, and these are my reasons to do so:

  1. The gluten challenge sucks
    1. I’m being frank with this one. I’m not sure there is a better way to put it, but ultimately, the gluten challenge sucks. Most people I know who have tried it didn’t last more than a day or two.
    2. Repeat after me “The blood test and biopsy for celiac disease require you to be consuming gluten for accurate results.” If you remove gluten from your diet prior to having any testing done, you will have to reintroduce it in order to have the tests done. It sounds like no big deal until you deal with the symptoms of consuming gluten again. If you don’t have celiac disease, it’s unlikely you’ll react to it, but if you do have celiac disease (or any other gluten-related disorder), you’ll likely be miserable.
    3. Different research centers have different recommendations, but the gluten challenge requires you to consume anywhere from a bite of gluten to four pieces of bread per day from anywhere from a week to twelve weeks (all depending on who you ask). My opinion is that I would be eating the highest amount recommended for the longest period recommended to ensure my results were going to be positive if there were any doubt. Who wants to go through a week of torture only to get negative results and then question if the results were accurate because you might not have consumed enough for a long enough period of time?
  2. Insurance
    1. Future medications: Imagine the day when a medication is developed to either prevent damage from cross contamination or allow you to eat gluten. Now imagine the cost of new medications before a generic is available (these are often thousands of dollars). Now imagine your insurance company will only cover the medication if you have a definitive diagnosis. Now imagine how badly you want a time machine so you can go back in time to get a definitive diagnosis.
    2. Additional diagnoses: It is common for those with one autoimmune disease (ex. celiac disease) to have additional autoimmune diseases. Many insurance companies require pre-authorization for testing because the tests are expensive. If you have celiac disease, it is likely they will approve the testing, but you could be in for a fight if you can’t prove you have celiac disease.
  3. Adherence to the diet
    1. According to the University of Chicago Celiac Disease Center, studies have shown individuals are more likely to adhere to the gluten-free diet correctly with an accurate diagnosis via blood work and biopsy.   
    2. Those without positive results on both tests tend to cheat more often and be less careful.
  4. Questioning the diagnosis
    1. What if your symptoms don’t resolve completely? Say you still feel sick… is it refractory sprue where you won’t respond to the gluten free diet… or are you still mistakenly consuming gluten… or do you have other food intolerances… or did you actually have a different condition altogether that happens to respond positively but is not treated by a gluten-free diet?
    2. Without a definitive diagnosis, the only way to find out if it’s for sure celiac disease is to start consuming gluten again and get tested. If you have any sort of gluten intolerance (and a condition that responds well to a gluten free diet), this process is going to be torture or impossible. Wouldn’t it be easier to get the accurate tests done in the first place and then look into other possibilities if the test for celiac disease is negative?
    3. There is nothing saying you can’t adopt a gluten free diet if your test results are negative, but you’ll at least know it’s probably not actually celiac disease. This is invaluable if your symptoms don’t resolve so you know to be looking for something else.
  5. Diagnosing additional conditions
    1. The endoscopy can also reveal other issues going on. There are a lot of other conditions that commonly occur to those with celiac disease. Some of these can be diagnosed via endoscopy, so you have the potential of killing two (or three or four) birds with one stone.
  6. Obtaining a baseline
    1. The endoscopy is rated on what is called a Marsh Scale. Marsh I is the lowest amount of damage, whereas Marsh IV is completely flattened villi.
    2. Knowing your Marsh score is helpful in cases where symptoms aren’t resolving. Your GI doctor may recommend a follow up endoscopy to check for healing to see if you are healing slowly or not at all.
  7. Inaccurate results (false positives)
    1. Although rare, it is possible to receive a positive test result on either the blood test or biopsy and not actually have celiac disease.
      Courtesy of the University of Chicago Celiac Disease Center
    2. According the University of Chicago Celiac Disease Center, “tTG is falsely positive in about 2-3% of people in general, but in about 20% of those with Type 1 Diabetes or other autoimmune conditions.” What if your results were positive due to other autoimmune conditions other than celiac disease?
    3. According to the Center for Celiac Research, the University of Chicago Celiac Disease Center, and many other top celiac research centers, there are multiple other potential causes for small intestinal villi damage which results in a positive test result during biopsy. This includes, but is not limited to:
      1. Other food intolerances
      2. Parasitic infections
      3. Intestinal lymphoma
      4. Tropical sprue
      5. Crohn’s Disease
      6. Radiation from cancer
        Other conditions that cause villus atrophy
        courtesy of the University of Chicago Celiac Disease Center
        Courtesy The Tender Foodie interview with Dr. Alessio Fasano
  8. The genetic test is a screening tool only
    1. Unfortunately, the genetic test for celiac disease only shows the predisposition to developing celiac disease. Testing positive for one or both genes only means that you could develop celiac disease--it does not have any way of telling you if you have it.
    2. It is estimated that 30-40% of the population has the genes for celiac disease, but only approximately 1% of the population ever actually develop celiac disease.
    3. The genetic test is generally only meant to “rule out” celiac disease.

    There is a new diagnostic tool that is gaining wider and wider acceptance. This specifically mentions the biopsy via endoscopy may not be necessary because it requires you to be diagnosed through 4 out of 5 markers rather than through blood test, biopsy, and positive response to the gluten free diet. Dr. Alessio Fasano, from the director of the Center for Celiac Research, is a strong advocate of this new tool. The five markers are:
    1. Symptoms
    2. Positive blood test
    3. Genetic compatibility
    4. Intestinal biopsy
    5. Resolution of symptoms on a gluten free diet

    My issue with this method is that it requires 4 out of the 5 things to happen. If you skip the blood test or biopsy and start a gluten free diet, you are automatically down to a maximum of four that can be confirmed. One of the criteria is a response to the gluten-free diet. If your symptoms improve, but don’t resolve, then you’re stuck. Do you go back on gluten so you can get the fourth marker and have the biopsy or blood test done? What if you’re gluten intolerant and something else is actually going on. You’ll never know if it is celiac disease because you’re stuck at a maximum of three markers unless you choose to do a gluten challenge. It can also be hard to get insurance to cover the genetic test because genetic tests are expensive, and it doesn’t seem insurance companies have caught up with the research on testing.

    With all of this being said, I highly encourage you to find a doctor who knows what they are doing with the tests. The last thing you want to do is prolong your suffering because the wrong tests were run or they were run incorrectly resulting in inaccurate results. I’ve seen so many accounts of individuals being misinformed regarding the diagnostic process which leads them to skip testing, get inaccurate tests, etc.

    Sunday, June 12, 2016

    Kissing Without Gluten

    Four years ago today, my husband took me on our second date. We were going to meet at Carrabba’s after I went to our local Celiac Support Group Meeting. He was working late anyway, so meeting for dinner after 8pm wasn’t a big deal. I said I would send him a text when I left so he could meet me there. I thought he worked right down the road from the restaurant so he would for sure beat me there because I was about five miles away. I made it to the restaurant, was seated, ordered wine, and had nervously checked my phone several times before he finally showed up. I was annoyed to say the least. As far as I was concerned, he was then late. I later found out his office was actually a couple miles down the road, and that he is notorious for saying he’s leaving work and then doing “one more thing” that takes much longer than expected.

    I don’t remember what I ordered, but I do remember he got lasagna. I’m not sure why I remember that except that when he walked me to my car after dinner, he asked me if he could kiss me, and I told him he could not because he just ate gluten. He never ate gluten on a date with me again, and he began brushing his teeth prior to seeing me. Eventually, he just stopped eating it on days he would see me because it was easier. That turned into him rarely eating gluten when our relationship grew more serious. The poor guy eventually figured out gluten makes him really sick, so he’s 100% gluten free now too.

    Why do I bring up this story? I’ve seen a lot of people asking about kissing those who’ve consumed lately. They question whether or not doing this can make you sick.

    A recent conversation regarding kissing and gluten. 
    There are no scientific studies on this matter that I know of, but I’ve always taken the stance that I’d rather be safe than sorry. When you eat, there is almost always at least some of what you’ve consumed retained in your mouth. Even a quick peck on the lips could transfer an errant crumb that remained on the other individuals lips. Go as far as french kissing, and you’re highly likely to wind up with some of their food remnants in your own mouth and then swallow them. Then, BAM, you’re sick.

    There are different thoughts as to how to get rid of the risk, but it’s ultimately up to making sure the mouth is cleaned as thoroughly as possible if the other individual has consumed gluten. The actual method doesn’t matter so much as the thoroughness and effectiveness of the cleaning method. Did they simply brush for 15 seconds in an effort to “kill” that evil gluten with their toothpaste and make their mouth smell minty fresh or did they swish and gargle with water multiple times and then wash their face to remove anything that might have remained? In that situation, I wouldn’t kiss the individual who brushed, but I would the one who swished with water. Toothpaste can’t “kill” gluten (nothing can), and I don’t really care if their mouth is minty fresh--I care if all the gluten is gone.

    I feel incredibly lucky that we have a 100% gluten free home when I see how many people continually get sick from cross contamination in their own home. I know a shared household is completely feasible, but I’m already a naturally anxious person and my anxiety level was always very high when there was gluten in my home. I also know that a gluten free significant other is not necessary.