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.

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

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.