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

What Did You Find Most Difficult About The Gf Diet


celiac3270

What have you found most difficult about Celiac Disease  

53 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

celiac3270 Collaborator

Just interested what everyone found most difficult -- there isn't any question that I need answered, but I was just interested. Thanks for voting!

-celiac3270


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



Celiac.com Sponsor (A8-M):



plantime Contributor

I was a "nothing." I do not like being sick, and learning that I can feel good like others made it very easy to avoid gluten!

kvogt Rookie

Beer!

burdee Enthusiast

I was a 'symptoms'. Even after I learned my 'symptoms' were celiac related and began to avoid gluten, I had many gluten 'slips' which kept the symptoms recurring. I LOVE following the gluten free diet so I can finally heal and resolve those pesky 'symptoms'. However, I've learned the hard way about cross-contamination in 'deli's, in restaurants, and in my own kitchen! :o I've also learned not to assume health products like vitamins or toothpaste are safe. Both my vitamin C supplement and my own toothpaste contained gluten. I just recently learned about the toothpaste. :angry: So maybe the most difficult part about the gluten-free diet for me was the steep learning curve of discerning which foods and products are gluten based and/or contaminated. Hopefully, I can soon go from a 'symptoms' to a 'nothing'. Since I substituted a safe brand of toothpaste, I have been feeling better and better every day. I just experienced my first dinner after which I had NO bloating or cramping pain. So this is what 'normal' feels like ... :P

BURDEE

Alexolua Explorer

Oops.. I put down restrictions, but I really am hating the symptons, kinda read it fast and thought it was asking just about the diet, lol.

And if it was just about the diet, I'd say everything!! But.. I'm new, I'll learn. Like all you ol' timers have, LOL. :D

lovegrov Collaborator

Loss of spontaneity. Every trip has to be planned out.

richard

sunshine264 Newbie

This was kind of a tough one for me. Initially it was the emotions, I was devastated and cried a lot. Then my best friend said..."hey, you can still have steak, seafood, chocolate and wine! What else could you ask for?" :D I guess she had a good point. Then I bought the book Wheat Free Worry Free by Danna Korn, and it was AMAZING..really helped me with the emotions, and still does at times.

Right now I would have to say that the hardest thing is lack of spontaneity. Working full time (and then some), shuffling 2 kids to afterschool activities and sports, etc...I can't just pick up a pizza on rushed nights. Often I will for them, and then skip the meal for myself or make a salad or a yogurt. There are still times that I wish I did not have to plan every ounce of food in the house.

Eileen

gluten-free since 5/10/04 (Mother's day! LOL)


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

I have two that sort of tied, but in the end I voted for symptoms.....that's the worst and is the source of my second problem: anxiety and emotions....thanks for replying so quickly...I realize that most Celiacs hate the symptoms, and many also have anxiety or great emotions....I was just wondering which outweighed which...etc....and I got my answer....thank you again.

-celiac3270

MySuicidalTurtle Enthusiast

I voted EMOTIONS.

Seph125 Newbie

I voted for difficulty staying on the diet.. and by that I mean the more unintentional ingestions. I have been trying to be gluten-free since last thanksgiving. But I am still symptomatic much of the time, I think eggs may be the culprit there... It was about 6 years that I was having the symptoms all the time, and the depression was unbearable. I figure it will take some time to heal the extensive damage that has been wrought but sometimes it's really hard staying patient. I am sure you are all familiar with struggling to resit beloved glutenous temptations only to have some other gluten source blind-side you later on. Sometimes it seems a wasted effort.. But I know it's really not because I feel worlds better emotionally. And in time I am sure I will physically too.

Well, this was a cathartic vote...Thank you.

It's nice to whine to people who can actually commiserate!! :lol:

~ S

ryebaby0 Enthusiast

I'm with Richard -- definitely loss of spontana..spontanaei....spontananeity....grrr...

I have to plan everything now, and long road trips are a challenge. On the bright side, we've found who our truest friends are. My son's friends got on the web, bought a bunch of stuff from Ms. Roben's and stocked their cupboards with it. Isn't that cool?

dana-g Newbie

I'm with Richard, too--both my daughter, age 11, and I have celiac disease, and our family outings are still about as stress-filled as they were when we had a newborn in the family! I've been dx'd a while, and had things pretty well covered for myself, but it's a whole other ballgame when you have to be prepared for "food emergencies" away from home with a child. We just take a full cooler everywhere we go these days, no more popping in to this restaurant or that. Definately takes a lot of forethought!

Melody Newbie

I thought dealing with people was the most difficult thing. I am a college student and my friends and dining services were so hard to deal with sometimes. They wanted to help, but I usually ended up left out or feeling so different and alienated from everyone else. Traveling with sports teams was a nightmare as well. It just made the adjustment that much harder and take that much longer.

cybergran10 Newbie

It's really difficult to eat in a restaurant unless you pick Mexican or Chinese or Japanese. They seem to put wheat starch and flour in everything. Cybergran10

celiac3270 Collaborator
It's really difficult to eat in a restaurant unless you pick Mexican or Chinese or Japanese. They seem to put wheat starch and flour in everything. Cybergran10

It is difficult....and all you can eat is the boring stuff that you eat all the time: it's not any different when I eat out: it's the same steak or chicken or potato that I'd have had at home, anyway....and like Richard (lovegrov) said, nothing is spontaneous or new or different......it seems to be the same: I don't find that the hardest part, but it can get rather annoying....then again, I'm 13....so if I live a LONG time, I could have another 80 years of meat, potatoes, and gluten-free noodles...with no new sauces or toppings....ugg. I agree with Richard, and I think he, and everyone else (dana_g, ryebaby0) explained it pretty well....you can't just say "that restaurant looks interesting, let's go there." I guess the positive thing is that I never really ate out much even before the diet.

I thought dealing with people was the most difficult thing. I am a college student and my friends and dining services were so hard to deal with sometimes. They wanted to help, but I usually ended up left out or feeling so different and alienated from everyone else. Traveling with sports teams was a nightmare as well. It just made the adjustment that much harder and take that much longer.

Again, I don't find dealing with people the hardest, but I really dislike explaining to everyone. Anywhere what I eat with other people I feel like the oddball....the different one....the weird one....not so much at restaurants (cause I can meat and potatoes and a vegetable....w/o any sauces or contaminants...and look like everyone else), but if everyone else is eating pizza and I'm eating something else, I feel somewhat self-conscious.....sounds like what you said, Melody... :) ...I dislike talking about it with other people or explaining unless I have to...and when I have to, I try to keep it short and to the point.

Thanks for replying...and voting...even though the votes were spread out, it seems like everyone thinks the same way about things....like eating out and symptoms.

-celiac3270

tarnalberry Community Regular

it's interesting, the thing with dealing with other people about it... I haven't had that problem, and I don't know how much is the people I've known, or the area I've grown up in, but everyone has some allergy or some dislike... "I can't have nuts", or "I destest tomatoes", or "I'm vegetarian (or vegan)", or "I can't have cheese", or "I can't stand fish", or "I don't like spicey foods", or something. Everyone has very different tastes, maybe I've been around a wider variety of that, though. ;-)

celiac3270 Collaborator

Yep.....I think it just depends on the person, as well...for example, some people are more self-conscious about things, some people have understanding people around them, etc....I think it depends partially on environment and partially on the person....

In many cases, it's not that I have problems with other people, but that I feel different...when I'm eating with others who aren't really aware of celiac disease...

-celiac3270

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.