Dear Friends & Family,

 

If you are one of the lucky ones and your friends and family get it and support you 100%, then I am jealous!  You are blessed. From what I’ve personally experienced and what I’ve read of others experiences, it’s not always so easy. It boggles my mind that one little word can be so hard for people to understand. Gluten. “What is gluten?” Isn’t that the dreaded question you wait for when you tell someone you have Celiac disease and can’t eat gluten? If only there was one simple answer that we could give. But because Celiac disease is so complicated and far reaching giving a simple answer is sometimes mis-informative.

Most people think.. “Oh, you can’t have wheat. No bread or pizza for you.”  UGH! That statement is like fingernails on a chalkboard to me. If only it were that easy! But it’s not. So then you have to sit and explain for them all of the ingredients and ingredient derivatives that you have to look for and worry about.  Not to mention trying to convey cross contamination to them. It’s often too much for people to understand.

There are different camps on this dilemma as with anything. Some people will just say tell them you can’t eat gluten, smile and move on. Others, like me, really think it’s our duty to educate people. If they think something is gluten free just because they don’t see wheat as an ingredient, then we are all in danger of being fed something that is poisonous to us.

I have devised a letter to help you out. Hopefully this will give you a way to explain things to your own friends and family.

I do also want to clarify that for the most part I try to be a positive person. All of these things that I am sharing recently are an important part of the healing process. It’s important to point out the realities that most of us face. If you are feeling down, angry or hopeless it is totally normal and you are not alone. You never have to be alone. Once we get through the hard parts, then we can figure out how to deal with the obstacles and get to the other side. You just can’t  jump the fence before you are ready.

My open letter…

“Dear Friends and Family,

If you are reading this, then please know you are someone very important in my life. That is why I am sharing something that is very hard, sad and challenging for me. I need your help. I also need you to be open to the information I’m going to share. It may be confusing and foreign to you. It was to me when I first found out. But, with your help, I hope to have a bright and wonderful future full of love, happy memories and great meals.

I have Celiac Disease.

What IS that?

By medical definition Celiac disease is a chronic digestive disorder in which damage to the lining of the small intestine leads to the malabsorption of minerals and nutrients.

  • The destruction of the inner lining of the small intestine in Celiac disease is caused by an immunological (allergic) reaction to gluten.
  • Gluten is a family of proteins present in wheat, barley, malt, rye, and sometimes oats.

What is gluten in?

Almost EVERYTHING!! Unfortunately it’s not as simple as looking at a label and not seeing the word gluten. Gluten is not just one little ingredient. It is MANY!  Anything that is processed has a chance of containing gluten because it is so overused in this day and age. Gluten can hide in terms such as hydrolyzed vegetable protein, textured vegetable protein, malt, vinegar (certain kinds can contain gluten), dextrin, modified food starch, Bulgar, kamut, semolina, farina, smoke flavoring, natural flavors (try to find a processed food that doesn’t contain this one!) And this is only an eighth of the list!  Sadly, sometimes even if a product says “gluten free”, it’s really not. At least for a Celiac. There is currently no law for gluten free labeling. So, irresponsible companies are allowed to label foods as such with no repercussions. Oy vey

How do you know if something is gluten free?

I do a LOT of research. As in, almost every day of my life I am looking something up to make sure it is safe for me or my family to eat. There are many safe companies out there but it takes a lot of work on my part. I send e-mails and make phone calls all the time to verify ingredients and the manufacturing processes of companies. It’s not always as easy as putting the right question into a google search. I have my smartphone with me at all times so I can look up every item that I am about to put in my shopping cart.

Why do you have to check manufacturing processes?

Because, even if a product has no gluten containing ingredients in it, that product could have been made on the same equipment with other products that DO contain gluten. That “gluten free” product is now contaminated. I cannot eat it. If one speck of the gluten manufactured in the other product makes it into my mouth it will make me sick.

Sick.. how?

Well, I am one of the many Celiac sufferers that does not have an immediate severe reaction to gluten. Not one that you can see anyway. This is almost more harmful than a Celiac that has an immediate response. Why? Because it takes me a little longer to know that I have been “glutened” and I don’t always know what it was that got me. Many Celiac sufferers have immediate and extreme intestinal symptoms, migraines, vomiting, and dizziness. The list goes on and on. For me, a day or so after I have been “glutened”  I will feel like I am slipping into a coma. My body becomes slow and unresponsive. I get so extremely tired that I can barely function. I have extreme anxiety that I cannot place and I am in a horrible mood. I cry at the drop of a hat and if you are within 10 feet of me you will probably feel my wrath. My anxiety is on high and my anger is uncontrollable. It can take me several days to recover. Recently when I’ve been “glutened” I’ve started to have more severe reactions than before. I’ve started slurring words to the point that a couple of times I thought I was having a stroke. Not fun! Many people will suffer horrible pain for weeks. And though I may feel better after a few days, the damage is still occurring inside my body for a very long time. Just because you cannot see my pain on the outside does not mean that my body is not being slowly destroyed on the inside.

So gluten just makes you feel bad right? Then can’t you cheat once in a while, enjoy having meals with us and eat the things we make for you? That’s really the polite thing to do.

Well, I guess that would seem polite, right? And if I put a little arsenic in your coffee every day it wouldn’t really kill you right away. You might feel a little yucky but hey, if that’s how I make my coffee you really should drink it so as not to hurt my feelings. Sounds ridiculous and callous right? Well, that’s how it sounds to me when you ask if I can just eat a little gluten right now. Gluten is like arsenic to me. A slow poison that will eventually kill me if I continue to eat it. Even a little bit. A crumb will do enough damage that it will take months to heal.

Why it’s NOT ok for me to have just a little, just this once….

The symptoms of Celiac disease can range from mild weakness, bone pain, and aphthous stomatitis to chronic diarrhea, abdominal bloating, and progressive weight loss. If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population. Further, gastrointestinal carcinoma or lymphoma  develops in up to 15 percent of patients with untreated or refractory Celiac disease. It is therefore imperative that the disease is quickly and properly treated. The big “C” is just not something I wanna mess with.

As you can see, this is serious stuff. This is not a fad diet I am on to help me lose weight (because obviously that’s not happening). It’s not “cool” to be gluten free even if that’s what you see in the media. Just because a celebrity does it, it does not make my disease any less deadly or real.

Are people going to think I’m crazy? Do waiters roll their eyes at me when I have to ask a million questions at restaurants? Will I have to go without eating when there is no safe food available? Will I have to bring my own food to your parties and dinners? Will there be places that I cannot eat anymore? Will I have to decline invitations sometimes?

Yes

Does that mean I don’t want to be asked to events anymore? Does it mean everything will center around me and what I have to eat? Does it mean that I can never eat out again? Will the food at my house taste weird?

No

Just because I have to be careful of everything I eat doesn’t mean that I want to stop living. I still want to be involved in all of the same social events as before. And it doesn’t mean that I expect you to cater to me. In fact, it is much safer and easier for me to bring my own food. As amazing as it is that you might want to cook for me, it is a scary thing. And what I have to do to stay safe may offend you. I have to inspect every ingredient you use to see if there is any hidden gluten. I have to check on the butter, cheese, mustard, mayo, dressing, spices, even nuts can be dusted in wheat flour! Anything made in a manufacturing plant CAN contain gluten. I also have to worry about the meat bought at certain grocery stores because they have a disclaimer that says some of the meat may be contaminated with gluten within the butcher area. I would have to know what type of pan you cooked it in because surfaces like cast iron harbor hidden gluten like crazy. I have to worry about your cutting boards, scratched up cookware and even your knives. Cross contamination is a constant worry.

I know it seems like I am being over the top. But believe me when I tell you, I’m not. I would not choose to have to go through this if it weren’t 100% MEDICALLY necessary.

Please don’t take this as my way of saying that I never want you to try. Because, if I have friends and family that are willing to make me a safe gluten free meal I will count myself as truly blessed. Please understand that it will break my heart if I can’t eat what you’ve made because it might have an uncertain ingredient in it. It will break my heart, but I still can’t eat it.  I can’t do it just so that I don’t hurt your feelings. If I do that, then I am only hurting myself…in ways that the medical field cannot even 100% understand yet.

Thank you for making the effort to understand. I am happy to answer any and all of your questions. In fact, your questions show me that you do in deed care and want to know what is going on with me. I apologize now if anything I ever say or do offends you. I do not mean to. It is scary what I have to deal with sometimes. And I have to keep myself safe. I want to be around for a long, long time so that I can also support you in anything that you need from me. Now, let’s eat! “

No matter where you are in your journey, you are going to have to deal these issues over and over again. There is simply not enough education or understanding out there. Feel free to use this letter if you need it. I hope it helps!

 

nonchalant

Nonchalant (nnsh-länt) adj. Seeming to be coolly unconcerned or indifferent

This has always been one of my favorite words. Ever since I first read it in a Sweet Valley High book when I was 11.  It just sounded so elegant and french. I’ve been dropping it into conversation ever since.
It perfectly describes how I’ve been acting over the past 3 years. At the time it didn’t feel like I was being nonchalant. But looking back, my lack of 100% compliance and diligence with the “diet” was equal to being indifferent. The treatment for this disease is all or nothing and it makes nonchalant a dirty word.
As I have said many times already and will continue to say til my last breath, it’s a journey. Everyone’s journey is different and nobody else can tell you the path to take. We can only show you the road we have travelled and the twists and turns that made us stumble. Maybe then you can adjust your own path to be a little easier to traverse.
I can’t be nonchalant about my health and what I put into my mouth anymore. I can’t go to a restaurant with a gluten free menu and assume that all is safe as I have done in the past. I can’t just buy every product with a gluten free label and believe that I will not face an internal attack. It is my responsibility to verify and triple check anything that I consume. It’s my job to call that restaurant and speak to a manager to verify how they avoid cross-contamination in their kitchen. I have to alert my waiter to the fact that I need to eat gluten free. I must e-mail every company whose uncertified gluten free products I buy and investigate what type of manufacturing practices they follow. We must be just as vigilant about the possibility of cross-contamination as we are about the gluten free ingredients.
And we must have a voice. I have always been a shy person. Pre-diagnosis (and when I was cheating) I had severe social anxiety issues. I could not even face going to my son’s school orientations without having a panic attack and trying to figure out how to get out of it. It was crippling. I know it was due to gluten because the difference in me is remarkable. So, it was very hard for me to learn to ask questions and speak up.
There is so much ignorance out there about Celiac disease and what gluten free really means. I can’t tell you how many times I’ve tried to eat out somewhere with a gluten free menu where the server had never even heard of gluten free. In fact, yesterday I was at a place where I asked the line cook about the gluten free choices and he said he didn’t know what I was talking about. All the while I am staring at the HUGE gluten free sign hanging right behind him. It made me so angry. And I had to realize that it wasn’t his fault. It was the fault of the owners and managers for not properly training their staff. It was the fault of a cooperation making such a bold statement and not having the social responsibility to back it up.
So, it’s our responsibility to educate everyone. If you are afraid to speak up and ask questions then you are keeping this disease locked away in a secret closet and nobody will ever see its ugliness. People need to see it. They need to know how dangerous gluten is to a Celiac. They need to understand that it goes beyond ingredients and they need education about safe food handling. If doctors can’t even diagnosis us then we certainly can’t expect a waiter to know anything about our disease. Teach them. Speak up and speak kindly and with patience. Show others that we are a passionate and caring community. Leave a big tip so that they will remember that going the extra step will benefit them as well.
It’s Celiac Awareness month. Make others aware! Tell your story. Contact at least one company and ask them about their manufacturing process. Put a bug in someone’s ear. Call a local restaurant and ask the manager about a gluten free menu and if they don’t have one tell them why they should. Be an activist. Don’t be nonchalant. It kills.

Product Review-Udi’s Gluten Free Pizza and Redbridge Beer

It’s time for my first product review. And I thought what better place to start than pizza? I think most people when they first find out they have to go gluten free freak out over losing pizza. No more cheesey hot domino’s pizza and wings delivered on a Friday night. No more crazy bread. No more sharing in a pizza party with your kid. Who knew pizza could be so heartbreaking?

But I am happy to say that there are alternatives. I think I have literally tried every GF pizza out there. I have found several that I enjoy but I will be honest and tell you they don’t taste like real pizza. And I have been on a mission to find one that does. Not just for myself, but for my son that may need to go GF as well. He is a very picky eater and none of the GF pizzas I’ve tried have made it off of his plate. The flavor is just too weird for him.

Until the other night. I have had great success with Udi’s products and they just came out with these new pizzas so I decided to give them a try. I picked up a Pepperoni and a Margherita. Right away I was a little disappointed in the size. But honestly with GF items I’m used to getting a small amount for a lot of money. The pizza is definitely smaller than it appears on the box. As you can see above, one pizza fits on a full size plate. I had planned for all 3 of us to share these and I would definitely need one pizza for each of us. I first saw these at Whole Foods but I was very excited to actually find these at my local Publix. They were roughly $7 each.

What was the verdict? WORTH EVERY PENNY!! Here is a direct quote from my super picky eater…”I love it. Best GF pizza I’ve ever had! I even like it better than regular pizza!” I think that last bit was thrown in for dramatic effect as he knew he would be quoted. I have no doubt that if given the choice he would still tackle me for a slice of Domino’s. But he ate every bite and was very happy. Which makes a very happy mommy. My hubby who is very vocal about his dislike of most GF baked items actually agreed that this pizza was amazing. He said it did not taste GF. I totally agree. Best I’ve had!

Above are the pics of the Pepperoni pizza. I actually left the Margherita in a little too long and burnt it. So it wasn’t pretty but still tasted pretty good. I prefer the Pepperoni even though Margherita is my fave flavor usually. There wasn’t enough cheese on it for me. As with most GF pizzas there is a fine balance between underdone and overdone. The outside edges crisp up fairly quickly while the inside is still a little soft. I prefer it more crispy and the boys prefer soft. 

And what is a good pizza without a good beer? The first thing I cried about foodwise when I was diagnosed was beer. What can I say, I’m a beer girl. And not just any gross light cheap beer. I love the dark rich frothy beers that real men drink. And I love a good beer with a good meal. I have tried many GF beers and  most of them are just plain gross. Too girly with flavors like citrus and strawberries. Beer and fruit should not be allowed to live in the same bottle. I will do a total beer review at some point. In the meantime, I will share one of the GF beers that I actually do really like. Redbridge by ANHEUSER-BUSCH. It reminds me a little of Killian’s Irish Red which was a fave pre-diagnosis. If you like a darker beer I think you will be pleasantly surprised and satisfied. And I have been finding it available at a few restaurants around town as well. Score!!