Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Seven Things You Hate About Celiac Disease


pedro

Recommended Posts

pedro Explorer

Hello everyone.

We need to vent the frustrations.

Seven things you hate about Celiac Disease.

1. Diarrhea

2. Headaches

3. Pains all over

4. Stinky

5. Abdominal Bloating

6. Not eating what I want (croutons), Big Mac, Pizza.

7. Lactose sensitivity ( I love Cheese)

Tell me your seven or maybe you have more?????????

Have fun always even if you are sitting in throne (bathroom with the big D).


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

1) Can't do ANYTHING spontaneously anymore. Have to plan and cook the food even for the most basic trips and activities. Went to the park for a playdate yesterday. Never met the people. Didn't know if they would bring snacks to share. Had to bring a bunch of different snacks so my kids wouldn't feel left out of whatever they were having.

2) Having to cook everything from scratch. I'm glad I know how to cook now, but having to cook three meals a day is getting old. I've learned new respect for my grandmother though. :)

3) Second-hand gluten (cross contamination) is the most pain in the rear part of this. If it wasn't for that, this would all be totally easy.

4) When I get my hair done I get glutened.

5) My dad probably died, at least in part, because of undiagnosed celiac. Stomach cancer after years of depression, anxiety, IBS, skin problems, memory and concentration problems. There are also at least a dozen other family members who had celiac-related problems, and at least that many still alive that need to be tested. No takers so far.

6) Ordering in a restaurant and having them roll their eyes or give me a look that makes me feel like I shouldn't even be there.

7) That my kids have to go through all of this too.

:(

Nancy

confused Community Regular

1. i hate that i got sick from something and almost missed soccer games this morning.

2. i hate that i have to read labels all the time.

3. i hate when i have lots of goods day then bamm im sick for an week.

4. i hate that i had a problem wiht casein and had to give up cheese.

5. I hate that this might effect my kids later in life

6. i hate that we have no place here that has the good gluten and dairy free foods

7. i hate that i have to look up everything before i eat it lol

paula

jerseyangel Proficient

1--gas :ph34r:

2--having to bring food with me where ever I go.

3--that I may have passed it to my sons

4--I'm afraid to eat out with my husband anymore

5--that I have several other intolerances along with it

6--for all of the time I spent sick, missing things I wanted to be doing, the job I had to quit--all the times I was misdiagnosed and prescribed unnecessary meds and steroids that are most likely responsible for my leaky gut.

7--that no matter how careful I am, I can still get sick off a molecule of the stuff :angry:

Boy, that felt good--thanks Pedro :D

loco-ladi Contributor

#1... I hate having to carry 3 days of food with me to work (it was so much easier to just buy a meal at the restraunts (sigh) and yes i asked they refuse to make even 1 meal gluten-free

#1b... I hate that I work with jerks who cant find the engery (prolly because of all that gluten they consume) to clean out the danged microwave after they use it and splatter gluten all over the insides so I have to eat my meal cold rather than risk getting mine contaminated

#2... I hate the extra padding around my middle (but hopefully it will slowly disappear)

#3... I hate that it took me 3 years of trading thoughts (and pills up the kazoooooo) with an idiot to finally go gluten-free for good who cares what he thinks about it.

#4... I hate reading all the labels and not knowing whats REALLY in "natural flavorings"

#5... I hate that I will never be able to eat at applebees again since receiving their "sorry we can't help with that" letter in my email today (sigh)

#6... I hate having to currently buy alot of my food online because I haven't learned to read between the label lines quite yet

#7... I hate that my printer for my computer is busted and cant print stuff out to help read between the label lines at the grocery store

whitball Explorer

1. I hate having problems with corn and rice in addition to gluten

2. I hate gettiing glutened from a gluten free menu

3. I hate the headaches, muscle weakness and vomiting after getting glutened.

4. I hate having to wear larger clothes because of bloating in the afternoon

5. I hate the added expense of gluten free products

6. I hate repeating over and over this disease to others.

7. I'd love to have a big mac again

pedro Explorer

I am soooooooo glad to be here. I can finally talk to people who understand me, and my fustrations.

You all are the best!!!!!!!


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator

1 Having to manage my every food thought, weighing up whether it is gluten free or not. Damage control.

2 Half of my well meaning friends, family or colleagues inspecting my lunch to rule out gluten. Cross examination.

3 The disbelief from the other half of my friends, colleagues and family who can't understand why I wouldn't drink a premixed alcoholic drink. Paranoia. (They think I suffer from that)

4 Morning tea shouts. Enforced dieting.

5 Label reading. Just because it says gluten free does not mean I will eat it!

6 The level of differences between one coeliac and another. We are not the same thankfully, but it makes it so hard to have a level playing field.

7 Not being invited to friends places as they are too scared to cook for me.

It feels like I have had a total personality change over the last year. I never used to worry so much about anything, but now I don't even know if I know myself anymore. It makes for an interesting life. It is all positive, as I am sure by continuing being gluten free I will have quite a few more years up my sleeve.

Cathy

happygirl Collaborator
2. I hate gettiing glutened from a gluten free menu

isn't that the truth!!!!!

scotty Explorer

1. gluten

2. doctors

3. paranoia

4. the past

5. any place that sells or makes food

6. perplexmatexfriggincrudiodide ingredients

7. the cure

missed the post hope it's not to late to add mine. :blink:

bremac Apprentice

1) going out with friends and trying to be "normal" and eat something

2) food shopping

3) expense of gluten-free food that doesn't even taste that good

4)having to explain all the time

5)cross contamination

6) how sick I get from #5 and wishing I could at least eat an oreo or something if I have to get sick

7) reading ingredients ALL THE TIME

little d Enthusiast

1. still not having a diagnoses (I no, I no that doesn't matter here)

2. LOUD GAS noises from my intestines and releasing out in public

3. The Big D all day and the next two nothing at all except passing gas

4. having people look at you strange when you tell them about celiac disease

5. My have passed it to my daughter who is sick right now

6. still not understanding all the do not eat ingrediants

7. still eating gluten on the weekends with my husband and regreting it later

Kaycee Collaborator
1. still not having a diagnoses (I no, I no that doesn't matter here)

But it does matter to you, and most of understand how frustrating it is.

Cathy

Guest lizajane

1. traveling 3 hours EACH way to a grocery store that has gluten-free food. But not being able to get there in the winter.

2. being afraid I will not have any gluten free food in the house--thank god for Amazon and the gluten-free mall!!

3.Diarrhea!!!!

4 Loosing sodium and potassium with my diarrhea so that I fall asleep and can't wake up until I get a gallon of gatorade in me!

5. Having to have someone get me the gatorade and help me drink the first few glasses before I can handle sitting up and drinking by myself. This hasn't happened in a long time-since I have been so totally gluten,lactose,soy,corn and everything else- free!

6. Going to the grocery store for my family. I don't know what anything tastes like any more-so what would they like? Also seeing all the wonderful food that I love (d) so MUCH !!

7. Being invited to dinners and having to ask what they are serving and then still having to take my own food.

8. Explaining to kids at the dinners why I am eating something else, and of course there is not enough to go around to every kid there, so I look so selfish!

9. Eating out and only being able to have salad or a plain steak with a plain baked potato.

10. Now NOT being invited to dinners because I am to hard to cook for with all the fancy foods everyone else wants to eat.

11.Wondering if I have done permanent damage to my body because my villa may not have grown totally grown back and I am not absorbing all vitamins and minerals.

12. Thinking I have done a wonderful job of watching my diet, only to end up bloating or with diarrhea and a major migraine at work .

13. Was on disability for 15 years because of this disease and the effects of it! I did work part-time all 15 years, but sometimes it was a struggle!

One positive note--ALL OUR FOOD IS TAX DEDUCTABLE AS MEDICAL EXPENSE! Advise to others, see if your insurance will pay for it or a Flexible Spending Account--get a Doctors order to eat the food!!

sparkles Contributor

I hate having not been diagnosed sooner (symptoms for 30 years). I really wonder what my life would have been like.... I am 60 now.... if I had known sooner. PERHAPS NO migraines, depression, colon cancer, fertility problems, numerous stomach and digestive problems, neuropathy, joint pain, etc, etc, etc.....

(Today is a poor me day!)

confusedks Enthusiast

1. not being able to go out with friends and eat anything i want

2. the big D word

3. stomach bloating

4. constant weight fluctuation

5. going to the grocery store and taking 43894839543 min. to read the ingredient list

6. exhaustion

7. chronic (!!!!!!!!) anemia that wont go away

im pissed off at gluten today

Kassandra

annie76 Apprentice

Ha ha ha!!!

1. Reading Labels every day of my friggin life!!!

2. WTH is the natural flavoring?

3. Calling 800 numbers in the grocery store

4. Explaining it to people, and they still don't get it (deer in the headlights)

5. Walking by Cinnabon, or that pretzel place in the mall :(

6. Eating something I don't even want just because its a busy day and I'm in a rush.

And so many more....Having Celiac on the negative side I have to say that it is just completely inconvenient in every way, shape and form. Also it just really sucks that we can't eat whatever we want when we feel like it, just like everyone else. (well most people ;) )

little-c Contributor

7 things I hate about celiac:

1) Not being able to comfortably eat dinner out. Having to call ahead and then interrogate the server when I get there. Then feeling afraid that I'm eating hidden gluten. Kind of takes the fun out of the whole experience.

2) The cost of gluten-free food.

3) Being afraid that I'll get cancer, seizures, osteoporosis, nerve damage or all of the above.

4) The fact that I carry the gene and will possibly pass it on to my offspring.

5) The amount of time I have to spend shopping for and preparing food.

6) The loss of spontaneity.

7) BRAIN FOG!!!! Does it ever go away??

little-c Contributor

edited by author

little d Enthusiast

Someone needs to call cinnobon corp. and demand them to make Gluten Free and the pretzal place Antie Anns.

Donna

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,193
    • Most Online (within 30 mins)
      7,748

    ChrissiG
    Newest Member
    ChrissiG
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
×
×
  • Create New...