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

Some Urgent Questions.. Please Help


Guest LJannise

Recommended Posts

Guest LJannise

Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this?? I've visited before telling everyone my dilemma to which the reponses were a good & solid agreement that I would indeed be a celiac, etc. (not that anyone posed as a doctor & that was completely understood) However, I have searched many places & dont see an area of the 'nitty-gritty' of this issue.

I dont get diarhea, I get the opposite. I am not skinny, I'm the opposite.

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

Is anyone out there???


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



Celiac.com Sponsor (A8-M):



marciab Enthusiast

You have to do what is right for you. Not what anyone else wants you to do.

If food is making you ill, then you have to stop eating it regardless of how others egg you on to eat what they are eating.

I went through this too, but now my family is supportive. They don't want to see me sick again.

As far as going vegan, it is not always an option for women. We lose too much iron on a monthly basis and some of us can not catch up without meat ..

And it will limit your food choices more than you have to at this point. Have you tried going gluten-free yet ?

Have you gotten any of the other common allergens out of your diet ? Soy, dairy, corn and eggs.

Try eating a bland allergen free diet for awhile to see if you can get your digestion under control.

Also, probiotics are great for your digestive tract. I drink kefir even though I can not tolerate any other dairy ...

Hope this helps ... marcia

Nancym Enthusiast

It helped me to start looking at gluten foods as poisonous. Then it didn't become a matter of will-power, it was more like survival. Replace "I can't have that" with "That will poison me" and I think it is easier.

BRUMI1968 Collaborator

I really hear what you're saying about food and drink being a social bonder in our culture. I do not drink, and I find it often is a barrier for my inclusion in social events. People try to include me, but after a while and so many drinks, it's hard to relate with folks, and I represent to them a healthier way that on some levels, they likely feel guilty for not pursuing, especially if they think they have drinking problems.

I experience this with food as well, to a lesser degree. In my house, we've gone gluten free even though my dh is not celiac. Except for pizza and beer, we have no gluten in the house whatsoever. This helped, because then he was eating gluten-free as well -- there was no innate separation based on WHAT we were eating. Further, I was a vegetarian/vegan (veggie plus fish -- but no dairy...there's no word for that) for some years before that. In that sense, I was used to be separate...but the town in which I live is chock full of veggies (college town) and lots of our friends are veggies, and my dh's family is veggie. So the veggie bit was easy. About six months ago, I stopped being veggie. This was because when I found out I had celiac, the limitations were such that I no longer could find enough to eat. I tried the Paleolithic diet which was great (in the summer) and I'll stick to it to a large degree nine months out of the year (I find I have to eat some rice or something in the winter, or potato, or I just feel cold and undernourished).

If you are vegan for political or ethical reasons, then you need to respect your values. However, if your values are getting in the way of your health, you have to ask yourself why you don't value your health more. If it is not the vegan/veggie lifestyle that is causing your illness (physical or social) and you're ethically bound to it, you should stick to it.

Just one last thing. I've been thinking a lot lately about how we as humans often consider ourselves outside of nature, when in fact, we are part of nature just like every other animal. Vegetarianism was not an option for early human beings -- this is something made possible by settling down and farming, which is part of our evolution I understand. What I'm saying is, the last time I bbq'd some trout for some friends, and I slapped the trout bodies onto the BBQ I thought, 'I could've caught these for my sustinence - that is perfectly ethical to do - it is perfectly ethical for ME (perhaps not you, I understand that) to cause the death of another living creature in order to live myself. That is the biological imperative. (It is NOT ethical for ME to eat poorly treated animals, or animals fed things they don't digest well, or animals kept in confinement, etc.)

If you're vegan for health reasons, you might consider researching the difficulty of digesting grains and beans, the staples of a vegan diet.

I hope you find some way to feel comfortable amongst others with your eating issues -- it is extremely difficult, I know. Good luck to you, and sorry for rambling so much.

Carriefaith Enthusiast

I'm sure most of us struggle with eating out at other places. I know I do. It is really hard sometimes. People sometimes seem hurt or offended if you don't eat something they touched or made. I don't eat anywhere now unless my mom has made the food or the restaurant is really strict on making gluten-free foods. I usually take food with me went I need to eat out and I find that if I don't tell people why I'm not eating, they will start assuming incorrect things about me.

Being a vegetarian or a vegan may be tough. I am dairy free because of an allergy and avoiding dairy can be just as hard as avoiding gluten by times. If you do decide to become a vegetarian or vegan I would consider keeping fish and/or eggs in your diet or talking to a doctor or a nutritionist.

miles2go Contributor
Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this?? I've visited before telling everyone my dilemma to which the reponses were a good & solid agreement that I would indeed be a celiac, etc. (not that anyone posed as a doctor & that was completely understood) However, I have searched many places & dont see an area of the 'nitty-gritty' of this issue.

I dont get diarhea, I get the opposite. I am not skinny, I'm the opposite.

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

Is anyone out there???

Difficult issues, I agree. I've been wrestling with the same and sorry, had to laugh, maybe because it's January here in Maine and there's just nothing we can do about it. I think that people who want you to be "normal" are not trying to abuse you, they just want you to be well, whatever that means for them, although it's not what means the same for us. It's taken about a year and much research to get back to my confidence in eating vegetarian and multi-vitamins can cure a whole host of sins. I'm allergic to soy, so will probably never be able to be a complete vegan, but there are a lot of cookbooks out there that provide recipes for pretzels and pasta, etc. that are gluten-free.

Hang in there!

I'm doing some pierogies today. :)

jukie Rookie
Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this??

I can't speak for everyone, but my biggest cravings turned out to be for the foods to which I'm intolerant (breads, cookies, and cheese to name a few), and my appetite for them (and pretty much everything else) was insatiable. Frankly, I could have never imagined life without these things, let alone having the willpower to resist them. My transition started slowly with a few months of eating gluten light, but it wasn't until fully committing to being gluten free (along with casein, soy, and egg which I had discovered were also problems for me) that things really started to change. One of the biggest and most suprising changes for me was that not only did the cravings stop, but my lifelong insatiable hunger has finally subsided.

I am not skinny, I'm the opposite

Me too...that's part of the reason I'd never seriously considered Celiac to be the problem. But in the nearly 5 months since going completely gluten free, I've lost nearly 60 pounds without even trying! :blink:

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude.

My personal experience is that the more comfortable and confident I become with my own diet, the easier it is for me to "assimilate" in social situations. It definitely takes a bit more planning, but I avoid getting overwhelmed by dealing with each event as it comes. The most important thing for me has been shifting my own focus from the importance of the food to the importance of the people.

BTW, cooking shows and even traditional cookbooks can still be great resources as many recipes are naturally gluten free or can be easily modified. Just the other day I was really excited to find recipes for mayo-free tuna salad and mayo-free potato salad from Rachael Ray that will work gluten free. Haven't tried them yet, but can't wait! :D

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian.

I was vegetarian many years ago, but found that ultimately it did not work for my body. There are others here who are/were vegan/vegetarian that may be able to offer more input.

Marcia is right...it's about doing what's best for you and not anyone else. It will take some time and effort to get there, but you can do this!!!


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this??

I don't know how much this is biological and how much this is psychological - either way, I've no doubt it's real. You get over it the same way you get over any craving - finding a way that works for you, and being patient. It may be strict avoidance. It may be replacing these items with gluten free ones you can have (Tinkyada or Glutino/Ener-G, in this case, for example). It may be something else. Recognize it's there, and it's a challenge that you'll have to face, and you're on your way to it. It'll take longer for some, and it's important not to forget about the psychological element (we're *used* to eating that stuff, after all, and everyone around us still will).

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.
You don't have to get over these things, but you may have to change your mental approach to them. If you can't bear the idea of eating differently from others, then there's the option of having everyone eat gluten free things. (This really is not a huge imposition. I usually cook the holiday meals for my family, and host dinner parties all the time for friends, and everything is always gluten and dairy free, and everyone loves the food.) But to a certain degree, this condition forces the acceptance of differences - it's alright to be different, and now that you are, there's no time like the present to at least accept the fact that it's ok to be different.

Besides the issue of same/different food, there are times when you just can't find anything safe to eat, and then you can choose to not eat. It's not being antisocial. This is one of the cases - along with a few other conditons (possibly diabetes, and food allergies) - where you learn to separate eating from socializing, mentally. You *can* partake in the socializing at a meal without partaking in the eating, once you have accepted the difference thing, and are prepared to deal with a question here and there (or are with people who already know the answers and don't ask the questions any more).

Part of this is learned experience - you learn how to speak up for yourself in selecting food situations you can partake in, you learn how to choose food you can in difficult situations, you learn how to answer the well meaning questions and ignore the rude ones, you learn how to separate the food and the socialzing, and you learn how to navigate the whole situation.

It takes time, takes a lot of effort, and it can be draining. I think of concentric rings, where it's easy at the center (with my husband), expanding out to areas where it's not difficult but a little more effort (with some close friends and family), to a little more effort (other close friends), to some effort in food deciding (the rest of my friends), to more effort in food deciding/bringing food and question answering (aquaintances), to a lot of effort in bringing foods/not eating and question answering and odd looks (large events). The ones at the center I do more often, the ones at the outside I do much less frequently.

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

*Never* do what someone else wants you do to at your expense. You know what you need to do for your health, and being a people pleaser won't make *you* happy and healthy.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

Vegan celiac can be tough, when you're eliminating a number of basics, but you're not the only one. You're going to have to do some cooking, with so many eliminations and the reliance of so many vegan products on wheat gluten. Check out cookbooks from the library, flip through vegan cookbooks - and non-vegan cookbooks - at the bookstore. Get ideas from anywhere. Explore new foods you may or may not eat right now (millet, buckwheat, quinoa, and amaranth are good grain sources of protein - more complete than wheat as well). Check out a raw foods cookbook, which has some lovely vegan options, if you haven't already. And I think someone here may have a couple links for recipes - in the meantime, Google may help you find "gluten free vegan recipes". :)

Phyllis28 Apprentice

I agree with Tarnalberry. I have disassociated socializing with food. I make the necessary arrangements so I have something to eat. If it's a pizza party I will bring my own gluten free pizza.

I have come across my share of people who are insistent that I gluten containing food. If after two polite "No, thank you's" and a brief explanation that it will make me ill, they are still insistent :angry: I inform them that "I really don't want to go to the hospital" Yep, a white lie but it works.

Creative-Soul Newbie
I dont get diarhea, I get the opposite. I am not skinny, I'm the opposite.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

LJannise,

I'm like you on both counts! Since becoming gluten-free, I've lost @30 lbs!

With some cravings, it has been said that sometimes we crave the things that we are in fact most allergic to...

I agree with the other posters who said that they have separated socialization from food; you have to for your own sanity. Even so, eating something that is different from everyone else doesn't bother me anymore; I remember very clearly how I used to feel before and I love how I'm feeling now, so I eat for me and my body and am not tempted to do otherwise for any reason at all! But arriving at this point is a process, and we all reach there at our own speed...

I've been a vegetarian for @ 10 years now, and I find that it's been great for me - but you have to find what works best for your own body! I eat a little fish and chicken occasionally; I used to eat eggs but I'm now allergic to them! No diary - always been allergic to that. I eat a good portion of raw food, and one day a week am totally raw, and have found that I actually eat a greater variety of foods after going gluten-free (for a little more than a year ago) than I did before! But I've always been into nutrition and have had several sessions with a nutritionist so I know what to watch out for and how to keep my body in balance...

I have been experimenting with new fruits and veggies, I now do stir-fries with lots of Indian and Thai spices (yummy!), and get a lot of ideas form cookbooks and cooking shows which I then extract from and tailor to my own needs ( "Take Home Chef" from TLC has some good ones!). Of course my Vitamix is my friend! :lol:

I have been interested in going vegan as well for a while mostly because of my own reactions...fish is the only 'flesh' that I don't have any reactions to... and I'm allergic to soy so all those fake meats are out now but, know what? I really don't miss them, to be honest!

I encourage you to hang tough, eat to please yourself and learm what works for your body. And oh... have fun looking at new recipes and experimenting! All the best to you!

kbtoyssni Contributor

Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this?? I've visited before telling everyone my dilemma to which the reponses were a good & solid agreement that I would indeed be a celiac, etc. (not that anyone posed as a doctor & that was completely understood) However, I have searched many places & dont see an area of the 'nitty-gritty' of this issue.

-I used to crave gluten-foods before I went gluten-free. Now that I'm not eating gluten anymore and my body's not addicted, I don't have these cravings.

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.

-I now view social meals as "be together & happy enjoying others' company" rather than "eat, be together & happy". I never used to go to dinner parties for the food. If it was only the food I wanted, I would have stayed home and eaten. I clearly go to dinner parties because there are people there. I always bring my own food. I almost always bring food to share. I don't feel separated because I don't define the event as being about the food, it's about the people and as long as the people are there it doesn't matter what you're eating. [i will note that my friends are fabulous at being inclusive so no one hassles me about having to eat different.]

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

-It is time to put your foot down and do what you know is best for your body. Other people might not understand, but it's you who has to live your life and in your body so ultimately you have to do the best for yourself.

katrinamaria Explorer

i crave gluten things too. lately more than ever...don't know why. but i feel like i eat things now that i never ate much of before (i was never much of a chocolate/ice cream person) and now i eat those...usually without even tasting it cause i'm scarfing it down. i think it's like i'm craving these foods i can't have so i just stuff myself with other "bad" things that i can have. i really crave papa john's pizza and a cinnabon or a panera bagel...things you just can't replace...

sorry this isn't much help, but i thought i'd let you know you weren't alone :unsure: i'm still trying to figure it out. if i do, i'll let you know :) i'm currently reading "intuitive eating" with makes some good points, maybe you might find it helpful. good luck--

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.