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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Diet So Isolating


Marlene

Recommended Posts

Marlene Contributor

I don't know about you, but I find this diet can be so isolating. The girls from my office just went out for lunch and did not even bother to ask me if I wanted to go -- I probably wouldn't have been able to anyways since I think they are going for pizza. I just find that at social functions (which always seem to revolve around food) I end up having to eat something different from everyone else.

Even at home, I feel so isolated sometimes. I try to cook meals that we can eat together whenever possible, but a lot of times it just doesn't work out. Sometimes by the time I get my food ready, the family is half done their meal. They are not trying to be rude, but they might as well eat while their food is hot instead of waiting for me, right?

I could go on with more examples but I think you get the drift. Does anyone have any suggestions or ideas? Is this something that I am just going to have to learn to live with?

Thanks a lot,

Marlene


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



Celiac.com Sponsor (A8-M):



StrongerToday Enthusiast

I totally understand. We recently went on a family vacation which really went pretty well. Most days we went to places where I could get some great food. It was on the last day they went to an Irish pub (gee, thanks), ordered onion rings, passed the soda bread, had huge lunches, then went to a French bakery. Then at dinner they didn't want to go out, but I was starving - all I'd had was the "low carb" burger (no bun) and a side of brocolli! :angry: Then the next morning they ate croissants from the French bakery for breakfast and said "gee, sorry we can't offer you any".

At first I was p.o.'d they'd said that *again* then I realized I'd have been mad if they hadn't offered. Yes, finally I realized this is just the way it is and to get used to it.

We went to Margartiaville for lunch where I had called ahead and the chef came out and positively fawned over me, brought me fresh fruit, had a special desert for me... it was all great until my dad said (eating some of my desert) "gee, now we know how it is to live your diet". Yeah, don't think so!!

But it's all good, I'm the only one who came home who didn't gain weight on the trip :lol:

melie Apprentice

I hear you, Marlene. This is something I'm still navigating. I feel that I have a large "FREAK" sign on my forehead when there's ever a social event revolving around food. I hate being different and hate the attention from being different, and answering all the same questions, seeing the same ''glad it's not me'' look in people's eyes.

Melie

Jestgar Rising Star

I'm sorry you're feeling left out. At my work usually they ask, or they 'we're going out for Sushi, we assumed you wouldn't want to come'. And I'm fine with that. Sometimes I say 'let's go here', or 'I can't eat at that restaurant, how about this one?' And sometimes I email other friends and go out to lunch with people that care about me.

If it looks like they're going out, ask. If they say they're going for pizza, make some comment about it sounding like fun (and about how you'll probably skip lunch so you can leave at 3, if you can get away with that). Gently include yourself, even if you don't go with them.

DingoGirl Enthusiast

It feels even MORE isolating in the beginning.....but the longer you do it, it does get better. :) When I dine out, and I have been able to do it safely quite often, I will speak to the chef or kitchen manager privaely, and just very sweetly explain what the situation is. They have alwyas been wonderfully accommodating and I"ve never gotten glutened from eating out, except once in the beginning. I will usually order a piece of sauteed fish with vegetables, alwyas ask for a clean pan, just put butter/lemon salt and pepper in it.....butter and lemon on veggies. It's always been fine.

Dining out at tiny bistros is even easier. I have had many things there - - they usually use fresh, pure ingredients and if there's any question, I jsut don't bother. Had some very spicy scallops two weekends in a row at this fabulous little restaurant we have here - my dear friend happens to be a server there so gets me all the ingredients and brings bottles/containers to me if there's any question.

I would suggest finding places in which you feel comfortable and safe, establish a rapport, and go from there. But a pizza parlor - I don't think there's any way to eat anything in there - bring your own food and drink a glass of water....just not safe. You have to pick and choose your activities with this disease - - but I find most people, friends, family, restaurant staff, are really accommodating....

gfpaperdoll Rookie

Please give yourself a break at home and only cook one gluten free meal for the whole family!!!

CMCM Rising Star

I think we all feel this way sometimes. But I've decided that as with most other things, people are generally thinking mostly only of themselves and tend to forget about the dietary limitations of others. It's just not forefront in their thoughts as it must be with us. SO.....I choose to think of this as mostly in my head, and I stop myself from being upset or offended most of the time. And actually, if you are inventive, most places have things we can eat. I got to the pizza place and eat salads from their salad bar. There are always people on diets who won't eat sugar, desserts etc. due to the diet, so this isn't all that different!


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



Celiac.com Sponsor (A8-M):



DebbieInCanada Rookie
..The girls from my office just went out for lunch and did not even bother to ask me if I wanted to go -- ...

For lunch at work - take initiative and control of the situation yourself. You dont' have to wait for someone to ditch you, or half-heartedly say "oh, I'm sure you don't want to come for pizza". Plan a lunch outing yourself. Ask one or 2 friends, choose a place that YOU can eat, and tell others you are going to restaurant X, and they are invited.

And at home - develop as many "everyone" meals as you can. I have very few double meals. If we do have gluten-free and non-gluten-free choices, it's for a part of the meal, but not the whole thing. For pasta - one pot of sauce, and then 2 pots of pasta is about the biggest effort I make! I make gluten-free Burgers, and then everyone else has a wheat bun, and I do gluten-free bun. Or, I make smoke sausage, and everyone else has perogies, and I have a microwave baked potato.

There are tons of meals that are "naturally" gluten-free, and very easy to make that way with small substitutions. (check out the baking forum!)

Hope that helps a bit.

Debbie

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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.