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  • Kelly Carter
    Kelly Carter

    A Love Note to the Partners of a Celiac Sufferer

      Journal of Gluten Sensitivity Summer 2019 Issue


    Caption: Image: CC BY-ND 2.0--hildaaa

    Celiac.com 07/22/2019 - I was thinking...the significant others of someone with celiac put up with a lot.

    They endure the constant discussions at every social gathering about celiac disease. New social contacts mean an explanation of why we can't come to your house for dinner without a 20 minute conversation about bringing our own food. It means the camaraderie of a pitcher of beer is ruined by our need to order cider or a glass of wine. It means that the well-intentioned friend at a pot luck brought something gluten free, but we can't eat it because we don't know how it was prepared.

    They cannot make dinner reservations at a new place without first a 20 minute review of the menu, then a 5 minute grilling of the wait staff, only to watch helplessly as we endure the results of the inevitable cross contamination.
    They hold our hair back, bring us the heating pad to put on our sore stomachs, and deliver emergency toilet paper for each request in the bathroom.

    Just not in the mood—really means, I want to but I was sick all day and don't want anyone in that general area. And sometimes it means, everything hurts, so I just don't want anyone to touch me.

    Travelling with us requires hours of planning where to stop to ensure we have a safe place to eat, then later speeding to the next exit to find a restroom in sometimes questionable gas stations. And then standing outside the bathroom at those questionable gas stations to ensure our safety.

    They also go gluten free in the house to make sure we have a safe place to live. They brush their teeth after their beer but before kissing us. They understand that paying for a gluten free loaf of bread that is half the size of normal bread and three times the cost shows us love. They check every label when going to the grocery store for us, just to make sure they buy the right stuff.

    Our partners often put themselves in awkward social situations, endure financial burdens, and put themselves in sometimes dangerous places to protect us. Celiac disease affects them is obvious ways and many that we may not see. They do all of this out of love for their partner.

    And your partner may not do any of those things or maybe all of them or maybe just a few—they love and support you. And if they don't, dump them!

    The bottom line is that we should appreciate those that choose to spend their time with someone with Celiac. We didn’t make a choice to have this disease, but every day they choose to be with us. So, thank you from the bottom of our hearts for all the love and support.


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    You forgot one...

    It means knowing you are loved so much that it's worth the inconvenience and hassle of all of these things.  My husband says that after dealing with the doc's pronouncement that it was probably colon cancer for three weeks, Celiac was a relief. It's been 16 years since my diagnosis and I appreciate the gluten free house he maintains. Gluten free spouses should have their own national holiday, IMO.

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    Guest celiac disease exaggerated

    Posted

    The teeth brushing thing is a bit extreme. I have celiac since 2008 and I do not think if someone drinks beer and you kiss them you are contaminated. In my kitchen we still have some gluten items. You just need to be careful and smart. Trips don't have to be all that complicated. Bring things and do not eat fast food...

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    Guest Great Article

    Posted

    47 minutes ago, Guest celiac disease exaggerated said:

    The teeth brushing thing is a bit extreme. I have celiac since 2008 and I do not think if someone drinks beer and you kiss them you are contaminated. In my kitchen we still have some gluten items. You just need to be careful and smart. Trips don't have to be all that complicated. Bring things and do not eat fast food...

    There are different degrees of severity of the disease.  I am happy for you that your disease is not as severe as the person who wrote the article.  That is wonderful.  

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    17 hours ago, Guest celiac disease exaggerated said:

    The teeth brushing thing is a bit extreme. I have celiac since 2008 and I do not think if someone drinks beer and you kiss them you are contaminated. In my kitchen we still have some gluten items. You just need to be careful and smart. Trips don't have to be all that complicated. Bring things and do not eat fast food...

     

    You are extremely blessed! I am beyond sensitive and become deathly ill from the most minimal amounts of exposure. My husband actually skips beer entirely because of it. We travel a lot and I am grateful he “gets” it. Projectile vomiting, running top speed for the restroom, sweats, chills, pounding head, basically feeling like I have the flu times 1000, is never a fun experience. 

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    14 hours ago, Guest celiac disease exaggerated said:

    The teeth brushing thing is a bit extreme. I have celiac since 2008 and I do not think if someone drinks beer and you kiss them you are contaminated. In my kitchen we still have some gluten items. You just need to be careful and smart. Trips don't have to be all that complicated. Bring things and do not eat fast food...

    I wish it were so simple. Are you sure you have celiac???

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    Since my diagnosis (have healed per a repeat endoscopy/biopsy), I have learned two things.  One, some celiacs are more sensitive than others and two, not everything is due to celiac disease (many celiacs have concurrent illnesses that need to be addressed).  

    I consider myself to be very sensitive as my reaction to gluten can last for months and can trigger my other autoimmune disorders (flares).

    Travel can be done with lots of planning.  

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    Guest Deborah Beauvais

    Posted

    16 hours ago, Guest Great Article said:

    There are different degrees of severity of the disease.  I am happy for you that your disease is not as severe as the person who wrote the article.  That is wonderful.  

    Thank you for sharing the different degrees and wonderful for those less affected. A very strict diet is key for many of us and good quality enzymes before meals, makes a huge difference in cutting down bathroom trips and absorbing nutrients..also a quality probiotic. Thank you for such a great article!

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    5 hours ago, Elisabeth Gerritsen said:

    I wish it were so simple. Are you sure you have celiac???

    Possibly may not have gotten the knowledge of the degree of cc that must be avoided to be compliant. Ironically, my diagnosis took a long time, I went gluten-free before diagnosis felt better, but a bad full on gluten  waitress experience despite my grilling  staff, calling ahead etc. led to the worst flare than ever.

    Since I was misdiagnosed so long I didn't join this forum not knowing what I was, but felt better gluten-free. What followed months later was a 2 week gluten challenge with scopes, 2 1/2 years of illness and healing etc.

    I joined this forum learned from the wise veterans and members here. Now the slightest cc and my DH patch (grateful now at patches) can erupt. Sensitive.

    So I am with you the brush teeth contact, entire gluten-free home, no eating out etc required. I can't know for sure, but I suspect the learning curve may not be solidified yet on the laizee faire poster.

    I am a DH that had both  gi issues for a lifetime before and skin issues before proper diagnosis. symptoms were all diagnosed compartmentalized and separately  misdiagnosed!

    Poster if celiac IMHO may not have nailed down the learning curve, and does not get both gi and skin, and about the 300 other symptoms the majority of us have. Let's wish them the wisdom to better health, for the forest can't be seen thought the trees. 🙂

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    Guest Celiac is not an allergy

    Posted

    20 hours ago, Guest Great Article said:

    There are different degrees of severity of the disease.  I am happy for you that your disease is not as severe as the person who wrote the article.  That is wonderful.  

    I agree I was diagnosed in 1989 (over 39 years ago) and then later as a high sensitive celiac even flour in the area or if it is in the air and I breath or smell it that causes a reaction for me. So this means yes brush your teeth after beer cos it will hurt me.  You don’t have to get into long discussions at gatherings either just say I’m sorry I am Gluten Free not by choice so I prefer to bring my own food.  Most restaurants refer to gluten-free as an allergy when it isn’t and I tell them no it’s not an allergy it’s a disease which can kill if we don’t follow our diet to the letter, so really restaurants other than my own kitchen, are a not somewhere I like to frequent, because for me I cannot trust other people to care about my problem when they are in a hurry preparing food for so many patrons waiting for their food they don’t have time and anything can slip into your food and we know what happens then.  Get to know your local eateries talk with them on a day they are not busy and u r not eating at their restaurant, you would be surprised how interested and honest they are.  If you are not satisfied with any restaurants answer to two questions which are  “do you use flour or any type of grain in this dish or cook it next too or on top of another dish that has flour etc” even if they say no you still can’t be sure.  Sad thing is even if they offer gluten free food but don’t prepare it in a gluten free designated area and educate their staff on what is required then it’s not going to work.  Trial and error with my local restaurants and the ones I try and don’t have any problems with that’s who I continue to visit for a night out when I am totally sick of my own pantry.    We have to rely on ourselves, trust our instincts cos the consequences far out weigh the desire for certain foods.  I continue to cook the same dishes I have always cooked but use gluten free option if it calls for flour etc there are so many good tasting substitutes now that you really can’t tell the difference if it’s cooked correctly.

     

    joan 

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    I have not been formally diagnosed. When I had the cameras I asked should I eat wheat? Was told eat what you normally do so I ate gluten free and no affects shown. I have had cameras since for issues and Consultant asked if I would eat Gluten etc for 6 weeks! I said I can’t as it makes me too ill not just stomach but pain and asthma and I couldn’t be off work for over 2 months. So he thinks Im Coeliac but can’t put it in my records as not formally diagnosed?

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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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