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Weddings and a Celiac

Having celiac disease is hard enough let alone when you get that beautiful wedding invitation in the mail and your first thought is “ How will I be able to navigate this?”

I know it is incredibly hard at social events, parties, vacations, weddings etc. Trust me, been there, done that! What you need to know is yes it can be hard, but yes you can work around it.

I have never wanted to be the person that is seen as the issue all because of having celiac. Between this past weekend, and this coming November, my husband and I have been invited to 6 weddings and to tell the truth, I am having a bit of anxiety over it. So what do i do? What should you do?

The first thing that I suggest, is once you receive that invitation, check over the meal options provided on the card. Our first invitation, I actually felt close enough to the bride to bring up my celiac disease. I reached out apologizing in advance that I was a bother, but wanted to ask her permission if I could personally contact the venue to go over my dietary issue. I told her how excited I was to attend the wedding, but wanted to double check to make sure nothing gets cross contaminated. I know everyone is different on how they would approach such a thing, but it does depend on how close you are to the couple.

Luckily for me, the bride was very receptive. She said she would reach out to the venue and talk about my options. As the wedding approached, I found out that it was going to be stations in different corners of the room. The bride assured me that someone would come to my table that night, and go over my options. Once the wedding arrived, I obviously was unable to eat any hor d’oeuvres. As we sat down a lady came and told me what I could and could not have at the stations. Well the salad station I could have the salad, but the dressing was not gluten free! Who really wants to eat a plate of dry lettuce. (Lesson learned…. Pack a tiny travel cup of your own dressing for things like this!)

I had to steer clear of the pasta station and boy did it smell amazing! I was able to have the roasted veggies with the meat at the carving station. I brought along my Nima sensor, that I purchased solely for travel and occasions like this. I am happy to report that Nima came back happy for the meat and veggies! I loved the added reassurance just for that reason!

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For the weddings that are coming up, I did reach out to some of those couples as well. I let them know about my husband’s shellfish allergy, but also my celiac as well. I said there are many things that I can indeed eat, the issue is everything for myself has to be made in a separate prep area to avoid cross contamination. I am still waiting to hear back from a few, but most of the couples are happy that I reached out, because let’s face it…no one wants anyone getting sick at their wedding!

So here is my little tidbit of advice: If your very close with the couple or one of them I say be honest and reach out. Let them know that you are excited to attend but nervous about the food. I wouldn’t get into a full speech about celiac, but just explain a lot of items contain gluten and wheat like dressings or sauces or gravies. Ask if there is anyway your food could be made in a separate area and not the same pans to avoid cross contamination. If for any reason they can not accommodate or guarantee a gluten free celiac safe meal, I do suggest eating before hand.

Until Next Time
XOXO
Alicia
The Celiac Corner

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Happy Memorial Day

Happy Memorial Day!

Thank you to all those veterans who served our country and to those who continue to still serve! Your service is greatly appreciated.

As we are all going out to our Memorial day cookouts, don’t forget to pack that gluten free sunscreen and prep yourself with you gluten free essentials!

Where am I going with this? Well, when you have celiac disease, it’s hard eating out but almost harder when you have to attend family events. When I was first diagnosed with celiac disease, everyone around me tried so hard to show great support. The biggest concern was that family and friends would not fully understand the disease, and what cross contamination is.

It was hard for me the first few years, when family would cook something that was gluten free and I felt awful if I didn’t try it. It was hard to just say no thank you, I’ll bring my own food. One thing for sure is that years later, i’ve mustered up the courage to just say no thank you as politely as possible. I am the only one who can help my body stay safe from gluten.

If you haven’t heard about Coral with Serving Celiacs, I suggest checking her out. She has these great downloadable resource cards that explain exactly what celiac disease is and cross contamination! I found these super helpful recently, as I have been going out a lot more to family events. Before finding those downloadable cards though, I had to figure out the best way to approach family and friends. When an event or invitation would come up I would just tell them not to stress about finding or making food for myself and to be safe and avoid cross contamination I would love to bring my own meal if possible. Not obviously at major events like weddings, this is not possible. Most people understood and gladly obliged that it was one less thing to worry about. Some people however, insisted they make a gluten free dish. In the past, I would risk eating their meal and feel awful later it. Trust me, it is not worth the effects! I would feel sick and it would last for 24 hours or so. It took a few days to get myself back to normal.

So here are a few tips when heading out to a party or family gathering. (weddings not included) :

If you don’t know the meal that is going to be served ahead of time, bring a gluten free dish or two. This will help to say that you didn’t know what they were having and wanted to bring a side or extra meal. (then you can also stick to eating these foods and staying safe) Be sure however to keep it separate from gluten containing foods.
Don’t expect any host to know 100% what celiac disease is. If you feel comfortable with that person ask them about what food will be offered and ask if it would be ok to bring your own food or eat ahead of time. Just be honest and tell them any chance of cross contamination will have side effects on your body.
For cookouts I would bring your own hot dog or hamburger rolls anyway and just let the host know you are bringing them to keep separate on another plate.
Make sure you check the condiments at parties for hidden sources of gluten.
I will always try to eat something ahead of time, but that’s just what i do to hold me over.
Now I have reached the point that with the people I feel comfortable with, I will tell them not to stress or worry about my food. I will still get some that offer items like gluten free brownies etc, however those people are now so fully aware of how sick I get that i trust that they take those extra precautions.

I know these are just opinion based tips but they were some that really helped me out. It’s hard to just tell people that you can’t risk eating their food, unless you feel 100% comfortable with them.

On that note I am off to the cookouts!

Wishing you all a safe Memorial day!

XOXO
Alicia
The Celiac Corner

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Have you ever felt defeated?

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It’s been 8 years since my diagnosis with celiac disease. I wanted to jump on here real quick and discuss the emotional aspect of being diagnosed. When I was first diagnosed, I felt lost, confused and scared. I was lost because I had never even heard of celiac disease. Just the word disease was frightening.

My GI specialist told me that my intestinal lining was completely flat. He spoke of the possibility of intestinal cancer if my diet did not change immediately. Where would I begin? I knew nothing about celiac disease. Over time I learned that even though I could change everything to make my body healthy again and absorb nutrients, there would be no cure aside of following a strict gluten free diet.

So what exactly am I getting at? Well, to put it directly, having celiac disease in adults can come with many symptoms. Now, not all men and women diagnosed with celiac disease can get these symptoms. I had many symptoms ranging from fatigue and anemia to depression and severe anxiety.

I’m going to be real for a second. I struggled hard with this diagnosis. It affected my mental health. I felt defeated. Here is what I want you to know! Whether you are just newly diagnosed with celiac or something else of that matter, you are NOT alone. You may seem clueless, scared and have so many different emotions as I had but there is so much support out there.

Not one person in my family or my husband’s family had heard about it so at first it was very difficult for anyone to understand what I was about to go through. Some family and friends thought it was just an allergy and not a autoimmune disorder. Some thought that I was over exaggerating. They just didn’t understand and really needed to be educated, as did I. Then out of nowhere, I started receiving anonymous cookbooks day after day about eating gluten free. I would come home and have a new package. I never did find out who sent me all of them but I knew that there was an abundance of support.

Please know that you can find support groups with those struggling with celiac disease as well as other people out there on social media.

Also if you feel like you would like to reach out to myself, please feel free to do so. Most of us with celiac have been or are in the same boat. We live, but we learn and we support each other!

Until Next time

XOXO
Alicia
The Celiac Corner

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A reaction to gluten….

Reactions will almost always vary in anyone who suffers from celiac disease. And i’m pretty sure if you have googled all those reactions, the internet would tell you, that you were dying. I would suggest not over panicking and call your practitioner instead.

I’ve come to know and what to expect my reactions will be over the years. I would like to preface this by saying that I am in no way a medical professional. I am not an expert by any means. I just know my own body and how it will react to gluten/wheat.

Before my diagnosis I would suffer with many symptoms, from headaches to stomach aches. If I have been in contact with gluten/wheat by touch for example I will break out in a rash. If i touch my children’s food that contain gluten without washing my hands right away, my fingers will start to swell like blisters and hurt from the pain. If i have used a body wash, or lotion without fully knowing that it contains gluten, then my body will break out in a rash that looks like little blisters and itch like crazy.  A lot of people actually think it’s pretty crazy to have a reaction if your not ingesting it into your gut, however things that contain gluten that you touch will be absorbed into your skin. My celiac is the type that is so severe, I will have a reaction on the outside of my body.

In terms of ingesting food, what will happen? I have become more sensitive as time goes on. As hard as I try to keep from myself from gluten, things do happen and when they do it is not pretty. If something becomes cross contaminated and/ or I ingest by accident a tiny piece of gluten, then I will get a really bad migraine.  If by chance I have had a meal, that was confirmed when out to eat to be gluten free and was actually not, then I will be sick in a matter of 20 minutes tops. Usually when this happens, my reaction feels like food poisoning.

Reactions can last for days or hours. It all depends on how much gluten you have had. Usually for skin reactions, I choose to take Benadryl. If Ii have ingested gluten by mouth, most times I feel sick for almost 24 hours. I always keep a supply of gluten free crackers in my pantry and ginger tea to help calm down my stomach.

Having these reactions are not fun and most of the time I am pretty good at keeping myself from being glutened. It does happen on occasion though, so try not t be too hard on yourself!

I have been down a long road with trying to keep my reactions at bay as well as avoiding cross contamination. It’s hard. So I explained above how I my body reacts when exposed to gluten via ingestion or by skin contact. Recently however, I had a particular instance while making my mother’s famous sausage bread recipe! It’s a family recipe that I don’t like to share with others, but make it for holidays and other small occasions. Ok back to my story, now I know I should not be touching the dough or the flour, so for that reason I wear thin gloves and still wash my hands afterwards. During the process of rolling and kneading the dough, you have to roll it in flour. It didn’t even occur to me that the flour was airborne! Within 20 minutes of preparing the dough, I became very sick. I couldn’t believe that i’m so sensitive now that I need to wear a mask while working with flour that isn’t gluten free. I know, your probably saying why the hell haven’t you just switched and used all gluten free items!? I totally get it. Being a celiac, we should have an entire gluten free house, but with 4 other people in the household who still eat gluten products, it makes it that much harder to cook completely gluten free. I will say this, I definitely keep all my specific appliances and dishes etc to myself. I have my own row of gluten free food in the pantry on the top level so nothing with gluten is above it as well. I am slowly starting to replace all my cleaning products to gluten free ones!  Just know that if you have just been diagnosed with celiac, this is a long process and takes a while to learn the “celiac” ropes. Stay positive, and work slowly!

I hope my readers will find this post helpful.

Until Next time…

XOXO

Alicia

The Celiac Corner

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Cross Contamination

For anyone who is suffering from celiac disease or even a severe allergy to foods that could cause life threatening issues, going out to eat is no easy task.

When I was first diagnosed with celiac, I am pretty sure I didn’t even attempt to go out to eat the first year. I wanted to cook at home and learn how to heal my gut from my own safe haven. As time went on, my husband and I began to venture back out into the world. Let me just tell you: it’s a scary world!  

I can remember my very first order out was at a place called Wild Willies!. Now this place was actually amazing for those who need something gluten free. (I’ll be doing restaurant reviews at a later time.) I remember ordering a burger and french fries. My husband was told that the fries were cooked in a dedicated fryer and the bun was frozen and thawed in a microwave. For my first outside experience, and even though the bun tasted horrific, the fries and burger itself tasted amazing and thankfully I didn’t end up sick.

So what should you be asking when you decide to go out to eat?

The main thing I have learned is to call ahead of time and ask to speak to a manager. Once we decide as a family where we may want to eat, I will look up the gluten free apps or online to see if they offer any gluten free meals. Once the manager is on the phone, one of my main questions to ask is if the establishment has a dedicated prepping space. If the place can’t guarantee a space to prepare foods separately, or only offer foods that can be made “gluten- sensitive or gluten-friendly” then that place is not really safe to eat.

If an establishment can confirm that they will have separate prepping areas, then I will give the thumbs up to go there. Once we go out to eat, I will ask to speak with a manager and the waiter/waitress and ask if the chefs can change their gloves to prep my food, all the while confirming what I was told over the phone that they do indeed have a separate prepping area. I know, I sound like a lunatic! The problem is, I have gotten sick from eating out way more times than I care to count. Every person who has celiac disease, their symptoms will vary, as well as their reactions.

Another thing, I also like to make sure of, is that the things like fruits, veggies or other items are not stored next to or near items that contain wheat/gluten. There is a huge risk that if fruit is on a shelf right below the breads, then the crumbs could fall on top of it. I know most people who don’t understand celiac disease would just suggest wiping off the crumbs and all will be ok. It is definitely not ok. I will also ask that the food be made or prepared in other bowls and utensils. Did you know that you can still get sick if they cook gluten free pasta in the same pan they just  made wheat pasta in? Like I said in the beginning, going out is no easy task!

What about eating at parties, weddings etc? Ok, this is a whole other topic. First of all I always like to talk to the host ahead of time. For things such as birthday parties or cookouts etc, I will just either eat at home or ask the host if they would feel comfortable having me bring my own food so to avoid cross contamination. (some if not all will offer to make some gluten free items for me, but how to politely say no could take up another post)

When it comes, to weddings, showers or other events that will be at an establishment, I will reach out the person who had sent the invitation and ask them about gluten free options, as well as reaching out to the manager of the venue. One of the hardest things, I have found is dealing with weddings. No one wants to bother the bride with their own issues that deal with food. And why would you? The bride certainly doesn’t need added stress to her plate! In the past, I have always eaten at home ahead of time. This year for example we have about four weddings to attend to. My plan for now is to reach out to the people I am close to and ask them if it would be ok if I could contact the venue to secure a gluten free meal. Another new thing that I will be trying out is the new Nima Sensor that had just arrived a few weeks ago! I will be doing a review about that as well. The Nima Sensor has been said to detect whether or not the food is indeed actually gluten free. This will make it very helpful in the long run, whether it be attending an event or traveling.  

So let’s recap:

 

  1. Call the restaurant and ask if their food can actually be made gluten free, and explain what celiac disease is! ( A lot of people are still so unaware of this disease)
  2. Ask the manager if there is a separate prepping area to make your meal.
  3. Once confirmed, and having arrived at the establishment, ask once again to speak to a manager, waitstaff and or chef. Confirm about the food prep area.
  4. Ask about where items are located and explain about cross contamination.
  5. Ask if they can change their food prep gloves and use clean, and new utensils and pans when cooking your meal.
  6. If you have the Nima Sensor, give it a whirl. If it comes back that it contains gluten, notify your waiter/waitress and alert the chef.

 

I understand that this is all information overload, and I can’t begin to tell you how overwhelming it was for me and sometimes still is. I can tell you that as time goes on and the more you learn, it will get easier! Feel free to share this article with others who are also struggling with celiac disease.  Don’t forget to click the follow button on the homepage to receive alerts on new posts~

 

Until next time….

 

XOXO

Alicia

The Celiac Corner

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My diagnosis

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Aren’t those photos you see so flattering? Just Kidding!! The picture on the left with the dark hair was when my second child had just turned 1. It was our annual Christmas party and I was skinny as a rail. I don’t mean in a good way! Now the picture on the right was when my second child was in Kindergarten, about 4 years later after healing the gut, putting weight back on and adding a 3rd child to the mix!

There are so many people that get misdiagnosed or undiagnosed and many doctors surprisingly enough still don’t know as much as they should about celiac disease.

Let’s rewind a bit.  November 16th, 2010, I had my beautiful, second child, a baby boy. That was a rough year as it was. I had recently lost both my mother and grandfather within 11 days of each other.  I was also told that my son would be born with multiple health issues. (That’s another story for another time, and luckily he was born perfectly healthy!)

So moving into the spring of 2011, I began walking with a double jogging stroller a few times a week and started noticing the baby weight coming off! Who wouldn’t be excited about that right?! It turned out to be more than just baby weight. I wasn’t really the best or I should say healthiest eater. I lived off of breads, pastas and pizza as a child.

As time went on, I noticed my stomach feeling worse. I couldn’t understand why on earth I was going to the bathroom multiple times a day, always hungry and having bad stomach aches that made me just want to crawl in bed and stay there for hours. I remember contacting my primary care to see if we could meet. They did all sorts of blood work and the only thing that appeared was my anemia. They put me on an iron pill (mind you, I used to be on iron as a kid for anemia as well but then stopped taking it)

As we moved into the summer months, the weight kept dropping and I kept feeling like crap! Nothing was fitting me anymore and then my husband noticed my spine was starting to stick out. Ok my spine always has a bit but this was drastic. I never was one to weigh myself either and when i hopped on the scale, I had dropped to 110 lbs from 135 lbs. . I called the doctor immediately and pushed for more answers. This wasn’t right. I  felt sick all the time and was withering away without a diagnosis.

After a week or so of hounding my primary care and contacting other doctors for more answers, they finally ordered more blood work and we would meet back to reassess the situation. After a few days, my primary care called and asked if I could come in to discuss the results. It was there she said my blood work showed that I had celiac disease. Heres the funny thing, she didn’t know anything about it! She said she did as much research as she could and as far as she knew I would have to give up eating gluten, and wheat etc. but not sure for how long. She ended up finally referring me to GI specialist.

Move forward a few months. My GI specialist couldn’t fit me in until the fall. I was now a mere 85lbs. Everyone was worried about me as I was myself. I felt depressed and lost without answers. I read as much as I could about celiac disease, but I couldn’t quite process how I had it! I had soooo many questions.  I also wasn’t allowed to go fully gluten free without meeting with the specialist. After meeting with the GI specialist he said we need to do an emergency endoscopy and after the procedure he would go over everything with both my husband and I!

Day of the procedure, about a week later I felt so many emotions. I was happy that I would finally have some answers, but scared and wanted to gain weight back. I felt ugly, and unhealthy. I wore massive sweatshirts to hide how skinny I was, because I couldn’t explain to everyone what was causing this. I also didn’t want people to stare. I was so self conscious.

After the procedure my GI specialist came in and explained to me that I definitely had this thing called celiac disease. He told me that I needed to change my diet right away and if I didn’t I could end up with intestinal cancer before the age of 30.  He was very direct with the results and not afraid to be brutally honest.  He handed me I think 30 pamphlets that told me what celiac disease was, what gluten is found in, how to avoid it. He then told me that this was an autoimmune disease and that there is no cure.  I will never be able to eat the way I did as a child and would have to eat gluten free forever in order to heal my gut. He showed me pictures from the endoscopy about how my intestinal vilii was supposed to look. I guess you could say it should look like the strings on a mop, but mine was flatter than flat. My body was not absorbing the nutrients it needed to survive and therefore I was just withering away.  As he kept relaying information, I just started to ball my eyes out. I don’t know if it was the information overload or if it was the idea I won’t ever be cured or even the fact that I had to forever say goodbye to my favorite foods. Before he left the room, he also added that people with celiac disease throughout their lifetime have a 90% chance of developing other autoimmune diseases as well as food allergies.

My husband asked what may have caused this. I was sort of shocked thinking about his answer. The specialist said celiac disease is usually caused when something traumatic has occurred and your body sort of goes into shock mode.  At the time, that made perfect sense to me! I was pregnant, my body was already going through so much, I was told about how my son may not survive, I lost both my mom and grandfather and then the stress of having my son and hoping he was healthy. I was a psychotic, hormonal, stressed woman!

I mean holy crap, someone please just hand me a glass of wine because I am going to lose it!

I was going to be referred to a dietician to help me start this gluten free process. I remember getting in the car with my husband and just losing it. How did this happen? We both then realized that even back when we were younger and dating that I would always complain I had a stomach ache after eating. I was also anemic and had enamel ware on my teeth as well. I never really put all those things together as symptoms. Well let’s face it if you google some symptom online you might as well be digging your grave now! 

Do you want to know the one thing that I wish I knew then, that I now know??? My GI specialist NEVER told me this was a genetic disease! I honestly didn’t even find that out until a few years ago.  I had no idea that one of my parents have to have the genetic gene for me to have this disease.  (This will be another post for another day) There is so much information out there now a days on celiac disease, and I truly encourage anyone that if something doesn’t feel right please do not be afraid to go with your gut and keep pushing for answers. I can’t imagine how it would be if I never did.

So there it is, my long diagnosis post! I promise over time to write more informational posts, but really wanted to dig deeper and let you all know a little about my personal experiences.

Until next time….

XOXO

Alicia

The Celiac Corner

 

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Welcome

Don’t ever be afraid to tell your story!  We are all here to show support for one another.

If your new here, a huge welcome to you all! I have to be honest that this is a new venture I have been looking forward to for quite some time, but never really had the courage to get out there! I am fully going out of my comfort zone! I grew up always being the type of person from time to time (and still do) , care about how people perceive me and that they just do not understand the reasoning behind my celiac disease. I am putting myself out there. I want to raise awareness on celiac disease. So many people go years (like myself) without ever being properly diagnosed. My sole purpose of this blog is  to share, my own personal experience with others who may also suffer from Celiac Disease, or gluten issues.  I am hoping that you all find comfort in knowing that you can reach out and find support many places.

I am not a medical professional by any means. I am simply hoping to share fun experiences, reviews of gluten free products and travel information with a little humor on the side…because who doesn’t need a good laugh from time to time?  I am welcoming anyone to go to the contact page and reach out if you have any questions! You may also follow my instagram account @the_celiac_corner to keep up to date with new posts and information!

 

Thanks for stopping!

X0X0 Alicia

The Celiac Corner