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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.