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  • Kelly Carter

    The Five Stages of Celiac Disease

    Kelly Carter
    5 5
    Reviewed and edited by a celiac disease expert.

      Panic in OMG what the heck am I going to eat. All of my go to foods - spaghetti, pizza, beer, and sandwiches are all gone.


    Image: CC BY 2.0--TJH1976
    Caption: Image: CC BY 2.0--TJH1976

    Celiac.com 01/16/2020 - So, I've been thinking about this for a while. There are stages to the diagnosis of Celiac disease just like there are stages to grief or healing from alcoholism. Here's how I see it.

    The First Stage is Relief

    Relief that I finally have a name to go with all of the crazy symptoms that have been happening. Relief that this beast finally has a name. Now I know what has been causing the diarrhea and/or constipation, constant fatigue, and brain fog. Even the doctors know that I'm not crazy now - I was really sick. Ha, ha, sweet revenge. I kept telling them I was sick, but they wouldn't listen. Relief that now there is an enemy to fight and that enemy is gluten!!

    The Second Stage is Panic



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    Panic in OMG what the heck am I going to eat. All of my go to foods - spaghetti, pizza, beer, and sandwiches are all gone. Holy cow!! What about Christmas stuffing and Thanksgiving pumpkin pie? What on earth am I going to eat? What about vacations? We can't travel because I won't be able to eat anything. We can't leave the house. I will be trapped for the rest of my sorry, sad gluten-less life. AAAAGGGGHHHH

    The Third Stage is Overboard

    Now, I've figured out what I can eat and I'm going to be hyper vigilant about being gluten free. Nothing can ever be in the vicinity of my gluten free food.
    People eating at the same table as me cannot possibly have bread on the table otherwise I might get sick. I cannot possibly go to a gluten filled bakery. I will die, literally die! I'm also going to tell everyone I'm gluten free and have celiac and cannot possibly ever come to their house because I will die, literally die!

    I have to take a bottle of water to a restaurant because I cannot trust them to wash the dishes. If someone had a gluten drink in that glass and they washed it, how can I be sure they got the gluten off. What if they washed it with gluten items? OMG, I will die, literally die if I drink from that glass. I will bring my own bottled water to the restaurant and just sit quietly while you enjoy your plates of gluten filled poison.

    The Fourth Stage is Acceptance

    I've got this awful disease. I'm going to do the very best I can at a gluten free diet. I will make mistakes, but it will be ok. For the most part, I'm healthy and I have a good grasp of what to do in most social situations. I know where I can eat safely and can
    cook safely.

    I no longer have to look up every single item I'm buying at the grocery store because I've looked it up 100 times before. I know the item is safe.

    I'm confident in my ability to order a gluten free meal at a restaurant and be okay. I know to say that I have a gluten allergy or celiac disease and it is not a choice. I know not to order fried chicken and expect the kitchen to be able to provide me gluten free fried chicken unless it is explicitly marked.

    I know for the most part this disease sucks. I know what my body can handle and what it can't. I never purposefully ingest gluten but realize we live in a gluten covered world and I will get glutened. I can calmly and rationally get through the temporary pain to get to the other side. I know that the double edged sword of the gluten free fad diet is temporary. I am grateful that the diet has brought awareness to the disease, but deeply saddened that the need for gluten free food has been cheapened by the fad dieters. I am grateful for spring with the gluten free bonanza of Passover and Aldi in May.

    The last stage is Hope. Hope that there is a cure around the corner. Hope that our Celiac children don't have to endure the lack of treatment for Celiac. Hope that we will have a way
    shortly to alleviate the symptoms of a minor and maybe major glutening and trust that we aren't doing long term damage to our systems. Or even, the ability to eat freely again without worrying about every morsel of food we put in our mouths. Hope that another generation doesn't have to endure the long and painful process of being diagnosed with Celiac. When the doctors dismiss every symptom as depression or IBS without really looking at me as a whole.

    The Really, Final Stage is the "GOOP" Stage

    This is where I mistakenly believe, like Gwyneth Paltrow, I invented Celiac disease.

    This is a little tongue in cheek! I hope everyone can get to the Hope stage of this disease and not get stuck along the way.

    5 5

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    Is there an international symbol that represents gluten free.  For example if I am in Europe and wish to take gluten free communion wafer.  How do I show that without speaking the language?   Thank you.  

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    On 1/17/2020 at 3:11 PM, Guest Carobehr said:

    Is there an international symbol that represents gluten free.  For example if I am in Europe and wish to take gluten free communion wafer.  How do I show that without speaking the language?   Thank you.  

    Hello, it's often a staff of wheat barred... I cannot upload an image here, sorry, but you can check it out here https://www.shutterstock.com/search/gluten+free.  I still wouldn't automatically assume it's understood by all, both the symbol and what gluten is and where it's found. But at the supermarket, say, for labelled goods, it should work.

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    Guest True for us all, I'm sure

    Posted

    I accutely remember the grief I felt as I cleaned out my cupboards of all the things I could no longer eat, and the grief of passing by all the grocery aisles I could no longer shop from.   But the acceptance comes from feeling well and never wanting to go back to the way we were.

    I have to share about fried chicken.  A restaurant in my closest city used to advertise gluten free fried chicken, which I was delighted to find was really good!  Then one day, gluten-free fried chicken was no longer on the menu!  Sob!  So I asked about it.  The gal behind the counter said "Shhh.  We still make gluten-free fried chicken.  Only gluten-free fried chicken.  But we don't advertise it as such because non-gluten-free people might not buy it."  LOL.  Thought you might get a chuckle from this, too.

     

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    It's a stalk of wheat in a circle with an X through it. (Search "crossed grain symbol") It's probably not universal, but it's used throughout Europe and Latin America.

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    2 hours ago, Guest True for us all, I'm sure said:

    I accutely remember the grief I felt as I cleaned out my cupboards of all the things I could no longer eat, and the grief of passing by all the grocery aisles I could no longer shop from.   But the acceptance comes from feeling well and never wanting to go back to the way we were.

    I have to share about fried chicken.  A restaurant in my closest city used to advertise gluten free fried chicken, which I was delighted to find was really good!  Then one day, gluten-free fried chicken was no longer on the menu!  Sob!  So I asked about it.  The gal behind the counter said "Shhh.  We still make gluten-free fried chicken.  Only gluten-free fried chicken.  But we don't advertise it as such because non-gluten-free people might not buy it."  LOL.  Thought you might get a chuckle from this, too.

     

    Running a gluten free bakery before starting my catering taught me to only say my stuff is paleo unless they mention gluten. If I say gluten out right they will not even try it...I had so many people say they like their gluten but not even know what gluten was.....

    On 1/17/2020 at 8:11 AM, Guest Carobehr said:

    Is there an international symbol that represents gluten free.  For example if I am in Europe and wish to take gluten free communion wafer.  How do I show that without speaking the language?   Thank you.  

    It is the wheat stalk with grains on it and a circle cross through symbol of some kind...do note that are variations of it.
    Many "gluten free" wafers for communion are actually low gluten ones as some sects will only give communion with wheat based ones. Some celiacs are alright but others still react, I personally do not take the chance, use gluten free baked goods, pray and do communion yourself, god will understand. In my case I take my loaf/batch of baked goods and get them blessed and keep in the freezer for at home communion.

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    I understand that this article is tongue-in-cheek, but I wanted to say that as far as diseases go, celiac is the least suck-y disease.  There are no expensive medications to take for the rest of your life.  There is no surgery.  I was astounded to find out that all of my myriad symptoms were due to gluten.  I dove right into figuring it out.  There was definitely a learning curve, & still occasional missteps (gotta keep reading labels -just because something was once gluten free doesn’t mean it will stay that way).  And we have plenty of substitutions available.  Not only that, but growing up I didn’t like cake or get why people loved pizza.  Now I do.  

       So yeah, it stinks not to be able to indulge in the plethora of microbrewery culture (kudos to you if you like cider), but that just means I have more calories I can budget to cake!

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    6 hours ago, Guest True for us all, I'm sure said:

    I accutely remember the grief I felt as I cleaned out my cupboards of all the things I could no longer eat, and the grief of passing by all the grocery aisles I could no longer shop from.   But the acceptance comes from feeling well and never wanting to go back to the way we were.

    I have to share about fried chicken.  A restaurant in my closest city used to advertise gluten free fried chicken, which I was delighted to find was really good!  Then one day, gluten-free fried chicken was no longer on the menu!  Sob!  So I asked about it.  The gal behind the counter said "Shhh.  We still make gluten-free fried chicken.  Only gluten-free fried chicken.  But we don't advertise it as such because non-gluten-free people might not buy it."  LOL.  Thought you might get a chuckle from this, too.

     

    What city and restaurant is that?

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    I don't know where you are going in Europe but I went to Italy 2 years ago & the eating was wonderful I spent most of my time in Rome but also Assisi. There were gluten free options everywhere, even gluten free pizza. When I booked I was sad that I was going to Italy & not able to enjoy my favorite food-Italian & pasta especially. But no longer sad. Italy is clued in. They did such a good job on the gluten free pasta I thought I was eating the real thing! I never once got sick from anything. If my gluten free pasta was so good I can only imagine what the "real" pasta tasted like!! But I felt like I was eating the real thing so it didn't matter. And the gelato shops were wonderful. Unless you get something with gluten containing things put on it there is no problem.  I can't wait to go back to Italy!!!! I don't know if the rest of Europe is that clued in since I've never been anywhere else? I don't understand why we can't produce a gluten free pasta as good as Italy??

    I was diagnosed in 2011 after being told for years I had IBS or was just stressed. Problems gone now unless a little sneaks in somehow.

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    As I read each of the 5 stages, I said to myself, "Yes, that's exactly it was with me."  These stages are spot on.  Thank you for the article.  It was affirming.

     

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    I am wondering if there is a way to find the name of the supplier for the gluten free breading for the fried chicken and also where to get the gluten free communion wafers.  This information would be helpful as chicken is a favorite item locally here and also the communion wafers are not available here.  Thanks for the help on this.

     

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    4 minutes ago, Guest JWMN said:

    I am wondering if there is a way to find the name of the supplier for the gluten free breading for the fried chicken and also where to get the gluten free communion wafers.  This information would be helpful as chicken is a favorite item locally here and also the communion wafers are not available here.  Thanks for the help on this.

     

    Amazon has some offers that can ship about anywhere IE https://www.amazon.com/s?k=gluten+free+communion+wafers&hvadid=78065380114666&hvbmt=be&hvdev=c&hvqmt=e&tag=mh0b-20&ref=pd_sl_71nzzeahop_e
     

    For the Chicken Breading I personally like to just paleo based ones like nutcrumbs (almond flour breading pre seasoned), or make my own with crushed pork rinds (or buy Pork Panko or coconut flour blends.  Again all on Amazon so you can source via your sites local.
    https://www.amazon.com/s?k=nut+crumbs&hvadid=78615133807145&hvbmt=be&hvdev=c&hvqmt=e&tag=mh0b-20&ref=pd_sl_991hh81398_e

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  • About Me

    I was diagnosed with Celiac in 2012 and have been gluten free ever since.  I live in Atlanta with my husband and two medium sized children.  I run a blog at FatCeliac.net that covers real life issues with celiac disease, upcoming drug trials, and try to be a reliable source of information for the celiac community.


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