Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

Dealing With The Social Aspect Of Celiac Disease


gluten-no-more

Recommended Posts

gluten-no-more Newbie

Long story short, I was gluten free from 2002 to 2004 but went off the diet because I got a second opion from a doctor who said my Crohn's Disease just mimicked Celiac and that I was misdiagnosed. I recently started battling with anemia and after two doctors deemed my blood tests and biopsies inconclusive, I was sent to the Mayo Clinic in MN for definitive testing. I was diagnosed a Celiac.

Now, I'm finding myself having to deal with social frustrations of the disease again. Right now only my husband and his family know about the diagnosis and I have been trying to hide it from my friends. I know eventually I'll have to tell them but I need some advice.

How do I keep it from being a constant topic of conversation? I remember every time I went to the bar or a restaurant they would talk about it or ask me a lot of questions. When they invite me along to places, I always told them to decide where they want to go and I can adapt to it or eat before I get there but they would only insist on going to places where I can eat and/or drink. I don't want them treating me any different than they usually do. I know they only do it out of love for me but I don't want them treating me with kid gloves. When it's time to tell them, how can I put it nicely that I have this disease and would prefer they not make an issue out of it?

Thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

your friends aren't treating you different when they ask where you can go - they're treating you like a friend. you ARE different, in that you have a dietary restriction they don't have. it's FABULOUS that they are so accommodating. I understand that it can feel awkward to have anyone pay any extra attention to you, but if you were pregnant, they'd also make some allowances.

you'll have to find a compromise between denying your friends the opportunity to BE your friends at the expense of making you feel singled out. once they know the restaurants that you would suggest, they'll just automatically pick something. and, honestly, that's better than having them pick a sandwich shop that doesn't have any options for you.

Switch2GF Rookie

I try extremely hard to not be an inconvenience to family and friends. I never let my restriction burden them, and if someone has to be unhappy, it is me. Sometimes I end up not eating or drinking with everyone else, but I still go. Usually, I can always find something to eat or drink everywhere.

Don't be embarrassed! I turn every negative conversation about my restrictions into a positive one. By the end of the conversation, I have the audience wanted to switch to a gluten-free diet. My college roommates ate gluten free for a while with me and they felt great and lost weight. My girlfriend eats gluten-free with me at home and doesn't complain. Everyone feels great when eating healthy!

Welcome the conversation and educate people about it. With 1 in 100 people having a gluten intolerance, it will become more and more popular. It is rare that someone I talk to does not know someone with celiac. Keep a positive attitude and turn the conversation positive. Don't be embarrassed. If you are negative about it, then others will treat it that way and also see it as a burden.

Jonbo Apprentice

I always just joke about me having Celiac. Not to hide any sadness or whatnot as some may do, but just because I naturally like making humor of things even though it doesn't always work :P Co-workers and (most) of my friends understand my condition and they know I'm serious about it but I don't let it hinder me. If they go out and it's a place that I can't really trust much (I'm looking at you Old Chicago/Applebees....) I'll just get a hard cider without a meal or just water if not available and they may not understand it.

Granted, I'm not someone who likes to nag or make someone work harder then need be for my condition. So I just try and minimize situations but that's just me personally.

Amyleigh0007 Enthusiast
I try extremely hard to not be an inconvenience to family and friends. I never let my restriction burden them, and if someone has to be unhappy, it is me. Sometimes I end up not eating or drinking with everyone else, but I still go. Usually, I can always find something to eat or drink everywhere.

Don't be embarrassed! I turn every negative conversation about my restrictions into a positive one. By the end of the conversation, I have the audience wanted to switch to a gluten-free diet. My college roommates ate gluten free for a while with me and they felt great and lost weight. My girlfriend eats gluten-free with me at home and doesn't complain. Everyone feels great when eating healthy!

Welcome the conversation and educate people about it. With 1 in 100 people having a gluten intolerance, it will become more and more popular. It is rare that someone I talk to does not know someone with celiac. Keep a positive attitude and turn the conversation positive. Don't be embarrassed. If you are negative about it, then others will treat it that way and also see it as a burden.

Well said!!! When I go out with friends and family the focus is on having fun and spending time with loved ones, not the food. If they are going somewhere and I know I won't be able to eat anything there I eat before I leave and order a diet coke when I get there. It's not a big deal unless you make it a big deal. You set the tone. If you are comfortable then everyone else will be too.

ang1e0251 Contributor

I agree that it's all about your attitude. You make light of it as a problem, and your friends will follow your lead. You don't need to be ashamed, you don't have leprosy, you just have a dietary restriction.

Is that how you judge your friends? If one of them has a broken leg and probably can't go eat at a place with a lot of stairs, wouldn't you acommodate them by going to a restaurant that made it easier on them? Of course you would try to make their life easier. It's easy for you to do and you really love your friend so you're glad to make this small adjustment. That's how they feel about you. It isn't hard for them and they are glad to do it. When you take that small pleasure away from them, it creates a little wall between you. Allowing people to help you even in simple ways is a gift you can give them. Don't deny your friends this. Welcome them like you would want them to welcome your help. Today they acommodate you, tomorrow they may need you to acommodate them.

OptimisticMom42 Apprentice

As your friends age they will also begin having restrictions. No salt, low fat, no sugar, unable to walk or stand for long periods, frequent trips to the restroom, sore backs, bad knees. We will all make accomodations because we still want to be together and not sit home alone. As long as you return the favor and accomodate their needs there really is no reason to feel odd.

But for now if you want, you could just say, "I'm on a diet."


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

I think it's awesome that your friends want to make sure you're taken care of. For example, my best friend, for my birthday, made me buckeyes. He went out and bought new butter, new sugar, new peanut butter, new chocolate, new vanilla even. And he washed all the dishes like eight times before he started and washed hands a million times during. The only problem? He forgot I can't have peanuts. It was such a sweet gesture that I had a few and suffered the digestive issues the next day, and it's wonderful that my friends are willing to make a big deal out of stuff, just for me.

Anytime I go somewhere with friends, they either pick somewhere I can eat or I eat first and we go to the place that has the fried pickles my friend likes and I drink wine. We all do things for each other all the time, so it's no big deal to eat places that are safe for me.

Mskedi Newbie

My friends are wonderfully accommodating and curious about this, especially considering it was my sister, not me, who was diagnosed and I'm doing gluten-free more as a preventative measure than anything else (I do have some symptoms that could be indicative of Celiacs, but I also have a negative blood test). I told them the first day I started, and then a week later several of them had read up on it and were sharing all these statistics with me and chatting about what I could and could not eat (to make things even more inconvenient, I've been a vegetarian for a looong time).

I don't want to be a problem, either, and I've started making a habit of having a little lunch box full of snacks with me when I go out, but I feel very, very lucky to have such great friends. After a while, the conversation won't focus on this so much, but I think you can expect your friends to be curious and perhaps even a little over-accommodating at first while they learn the ropes with you. I think that just proves that you've managed to get some great friends for yourself. Enjoy that. Some people have mentioned friends shrugging off the problem -- if anyone had to choose between the two, I'd bet they'd go with your kind of friends. :)

Nancym Enthusiast

Let your friends act on their concern for you! It's what friends do for one another. And be sure to share your experience with them, you never know, one of them might realize she has issues with gluten too. You could be doing them a huge favor.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Stegosaurus replied to HectorConvector's topic in Related Issues & Disorders
      349

      Terrible Neurological Symptoms

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      349

      Terrible Neurological Symptoms

    3. - Aretaeus Cappadocia replied to Irishgirl5's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Digestive symptoms yet negative celiac screening

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,995
    • Most Online (within 30 mins)
      10,442

    Jody Booker
    Newest Member
    Jody Booker
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Stegosaurus
      I've been following a low carbohydrate Keto AutoImmune Protocol diet.  It's all I can handle.  I'm so excited to learn about thiamine from you.  The benfotiamine should arrive today.  I sure hope it's my missing piece!!!
    • knitty kitty
      I respectfully disagree, @Scott Adams.   Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss.  The body will use stored fat and muscle to provide energy in thiamine deficiency.  This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass.  Using stored fat and muscle for energy requires less thiamine than the amount of thiamine required to process carbohydrates.  Thiamine deficiency causes gastrointestinal Beriberi, a localized thiamine deficiency in the digestive tract, which results in dysbiosis, inflammation, and abdominal pain.  Carbohydrates can remain undigested in the intestinal system, which bacteria feed on, encouraging SIBO, and prompting dysbiosis, leaky gut, and inflammation.  Following a low carbohydrate Keto diet, like the AutoImmune Protocol diet, can help because it removes excess carbohydrates that the bacteria feed on.  SIBO can cause weight gain due to inflammational edema of the intestines (water retention in the tissues of the intestines), gas, and slowed transit times.  SIBO bacteria can absorb nutrients from your food before you can, resulting in additional deficiencies of other B vitamins and nutrients.   Thiamine deficiency is corrected with high dose Thiamine Hydrochloride, Benfotiamine and/or Thiamine TTFD (tetrahydrofurfuryl disulfide).  High dose thiamine in the form Benfotiamine has been shown to promote intestinal healing.  It improves "leaky gut".  High dose Benfotiamine will improve the gut microbiome in favor of beneficial bacteria.  Thiamine TTFD is beneficial for neurological issues.  Thiamine TTFD improves brain function and is beneficial for mental health issues such as depression and anxiety, and other neurological problems like Ataxia and Brain Fog.    Methylated (activated) B Complex vitamins help correct Thiamine deficiency because all eight B vitamins work together.  Vitamin C and the four fat soluble vitamins (A, D, E, and K) are needed as well.  Minerals like Magnesium, Calcium, Iron,  Potassium, and others may need to be supplemented as well.  Thiamine and Magnesium make life sustaining enzymes together.   Supplementing with high doses of Thiamine and other water soluble B vitamins will lower pain and inflammation, improve fatigue, improve muscle mass gain, as well as regulate the intestinal microbiome!  So, @Stegosaurus, you can get healthier while improving gut dysbiosis at the same time! References: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/
    • Aretaeus Cappadocia
      You may know this already, but in addition to what you've described, you may also want to get a genetic test. About 1/3 of people have one of the genetic markers that are necessary (but not sufficient) for getting celiac. If your son is one of the 2/3 of people that don't have the marker then it is almost certain he does not have celiac. (The genetic test won't tell you if he has celiac, it can only tell you whether or not he is susceptible to getting celiac.)
    • JennMitchell79
    • Scott Adams
      That is really interesting, especially because it points to how the gut microbiome may still stay altered in celiac disease even after going gluten-free. The idea that a fiber like inulin could help feed beneficial bacteria and reduce inflammation is encouraging, although I imagine some people with celiac disease or other gut issues might still need to introduce it carefully depending on tolerance. It definitely feels like an area worth watching, because anything that could help support healing beyond just avoiding gluten would be valuable.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.