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!

 

7 comments on “Dear Friends & Family,

  1. Patty Ewings on said:

    I was diagnosed about 8 months ago after years of being followed by a gastro who told me I has IBS and lots of inflamation, and then continued to have a colonoscopy every year because he did remove a precancerous polyp…..Approx. 2 years ago I started randomly passing out for no known reason. Blood pressure always went so low and then I would go down….long story short and many hospitalizations. I happened to see a neurologist and on a fluke he ran 21 blood tests one being celiac’s and sure enough it was positive. However I have other health issues along with the Celiac’s Disease, Thyroid problem high titer for lupus, but not high enough to have the disease? P.S. my mom died when I was 5 from Lupus, and I am now 52…..I have suffered my whole life since I was a child with a stomachache at least 5 days out of a wk. I am not disabled due to the passing out episodes and continual hospitalizations….I am on a FAITHFUL Gluten Free diet for the past 6 months and do feel somewhat better. Your open letter is so right on!!!!!People think oh you just can’t eat wheat, and bread……I am sick of feeling as if I have to educate people on this disease which is what I’ve been doing since I found out, even to my family…..I’m depressed and have such terrible fatigue and brain fog…..CELIAC DISEASE SUCKS! I struggle everyday, but try to keep a positive attitude, and finding your sight made me feel as if I wasn’t going crazy, so I just wanted to thank you <3

    • truly madly freely on said:

      Hi Patty,
      Thank you so much for taking the time to comment. I have to say that when I read this I was brought to tears. All I want is to touch and help other people that are suffering and to know that I’ve done that for you means the world to me. This can be such a lonely battle sometimes when those closest to us don’t understand. I’m so sorry to hear that you are still feeling depressed and exhausted. I know about that all too well! I am still constantly learning and trying to find new things that help. I am very lucky to have found an endo doctor that specializes in thyroid disorders and Celiac disease. I feel that he has literally saved my life. I am hypothyroid and I know that my 2 diseases are very closely related. I spent years begging doctors to change my medication after much research into the terrible side effects of Synthroid. Unfortunately, for most people Synthroid will only make your symptoms worse (muscle pain, fatigue, brain fog, hair loss etc.) I did a lot of research and heard miracle stories about Armour Thyroid. He was the only doctor that would try it for me. And it changed my life. He keeps my levels at a point that most doctors think is crazy but it’s the only time I feel even remotely good. I can tell right away if my levels are off. I have also been doing a lot of research lately into the Paleo lifestyle. It’s a pretty severe change in diet but people are actually healing this way. I have posted a couple of recipes that are Paleo friendly and will be posting more. I’m hoping to navigate this new path in a way that makes you feel like you aren’t missing out on anything. Please keep coming back and sharing. And if you don’t mind I’d love to hear any questions or concerns that you have. I want to do more posts to help those newly diagnosed and struggling. So I need to know what it is people are searching for.
      Thank you for being here!!

  2. Gluten Dude on said:

    This is really awesome Christy and should be required reading for all friends and families of celiacs. Kudos to you!

  3. Wendy on said:

    Christy,

    Love this letter. A Fabulous idea and perfect to share with family and friends.

  4. Thank you for sharing this wonderful letter, (I knew from a nutrition class that celiacs could be deadly, your letter shed a huge light on just how deadly it can be) I don’t suffer from celiacs disease but I have a very dear friend that does and she’s not as diligent about not eating gluten as she should be : ( . Your letter was very eye opening for me, and I am going to work harder at helping her be more diligent when it comes to being gluten free. Her family doesn’t support her as much as they should/could your letter made me realize that I need to double my efforts in helping support her and at the very least when she’s with me we need to eat gluten free.

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