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10 Things I Hate About Celiac

Mtndog

By Mtndog
in Coping with Celiac Disease

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Mtndog Collaborator
Mtndog
Posted
  • Author
I'm sure someone must make belt clips. So right next to your phone and pager you can clip on your toilet roll holder.

:lol: :lol: :lol: :lol: :lol:

I HATE non-tropical sprue but I LOVE you guys!

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  • Replies 107
  • Created
  • Last Reply
Ruth Enthusiast
Ruth
Posted

Having people compare their (short,unsuccessful) time on the Atkins Diet with being on a Gluten Free diet! "Oh, I know just how you feel! It's so hard!" GRRRRR.....

SillyBoo Newbie
SillyBoo
Posted

Here's my biggest: Having to quit my amazing job because my employer didn't understand the nature of this illness (particularly the effects pre-diagnosis), and was unwilling to accomodate my needs.BTW, I worked in public health, yet still no understanding...

Mountain Mama Rookie
Mountain Mama
Posted

Not being able to eat a big mac!!!!!! If I think about it I can taste it....

Having to deal with people who say, "Are you sure your dr isn't overreacting??" and, "but you don't EAT the lotion!"

Not being able to order pizza, having to cook it from scratch every stinkin time!

Having to read the ingrediants of EVERYTHING, even if you bought the same thing last week.

Having people say, "Oh, my dad had to eat gluten-free, he always was just eating the cheese off of his pizza when we go out" and having to explain, um, no, that won't work for me.

Not being able to grab a burger while shopping for the day.

Dealing with people passing bread over your plate while eating away from home....

Looking at people with that deer in the headlights look when they say, "So, does that mean you can't have bread?"

And did I mention the big mac?

NoGluGirl Contributor
NoGluGirl
Posted

Things I hate about being gluten free:

1. Sucky relatives that refuse to believe you have it, and that they could too.

2. Stupid doctors (that is pretty much all of them) that do not know anything about Celiac.

3. My mother's dog getting better medical care than me and the rest of us.

4. Inconsiderate people (family again) glutening you with their carelessness (like buttering and eating their toast over your coffee or pouring cereal by it and then not telling you). Then they act like it is nothing when you get sick!

5. Cross-contamination in any form!

6. Having to explain to everyone over and over what this disease is.

7. Becoming unbearable nauseated, breaking out in a sweat, shaking, having my hands go numb, and getting the dry heaves that feel like my insides are emploding if I do not get a promethazine down quick enough once I have been glutened.

8. People flaunting all they get to eat in front of you.

9. Having to be paranoid about everything.

10. Not being able to eat a Big Mac and Fries anymore.

Dear Mtndog,

Guess what? The Chocolate Emporium has some soy-free, gluten-free, casein-free chocolate chips. Maybe there are some other soy free items too! I thought I saw some! Just go to www.choclat.com and check them out! Their cake mixes are delicious too!

Sincerely,

NoGluGirl

johnsoniu Apprentice
johnsoniu
Posted
I'm sure someone must make belt clips. So right next to your phone and pager you can clip on your toilet roll holder.

Oh, the looks that ought to get me at the mall! I think I'll try it B)

Mtndog Collaborator
Mtndog
Posted
  • Author
Oh, the looks that ought to get me at the mall! I think I'll try it B)

Well- you did say you were comfortable in your masculinity. This will be the true test!

I have a few more to add:

"But I run all my pans through the dishwasher. That sanitizes them" Yeah- from bubonic plague but not gluten!

What? You're allergic to glue? Weed? What?"

"Oh right- pasta is made from wheat?"

"I assume you can't eat this huge frosted chocolate chip cookie that I brought for every one else."

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dragonmom Apprentice
dragonmom
Posted

Going out to a party and not seeing anyting to eat. Going to a dinner party ,where they know you are gluten-free , and having nothing to eat. Seeing all kinds of good things to eat that are not gluten-free. Buying the gluten-free stuff that tastes like crap. Not having regular pizza. Not having to read everylast thing I put in my mouth. OOOO like the biggest pity party in the world. :P

NoGluGirl Contributor
NoGluGirl
Posted

Dear Mtndog,

Another one to add to the list is people who don't know anything about your disease, but claim you do not really have it! :angry: That would be my genius parents. My father tries to give weightloss advice, despite the fact he is not thin either. My mother has serious bowel problems, stomach cramps daily (she eats crackers every day!) takes 3 different prescription meds and one OTC liquid remedy (liquid cork) and has high BP, high triglycerides, and high cholesterol. She claims I am just obsessed with health issues. She said that about my gallbladder disease too. :rolleyes: Thank God I ignored her and the doctor, or I would have ended up with the thing rupturing inside of me! Talk about too close for comfort!

Sincerely,

NoGluGirl

ptkds Community Regular
ptkds
Posted

1. I hate shopping at the grocery store. It reminds me of what I can't have. And someone please tell me why they have to put the cookies and crackers on the same aisle as the baby stuff!!! I need blinders at the store!

2. I hate that I no longer feel comfortable leaving my toddler with a babysitter unless they are at my house. I usually take my kids to a friends house, but I cant do that anymore :( .

3. Ordering a pizza when I am too busy or too tired to cook

4. I miss cheap bread and real noodles.

5. I HATE telling my toddler that she can't have some foods that other kids around her are eating. Toddlers just don't understand that!

6. I miss my old lifestyle and conviences!

7. Well-meaning friends asking my if I can have the oreos she brought to share w/ everyone.

8. Paying for "organic" at the health food store when all I care about is gluten-free!

9. Being able to find food in my small town.

10. I hate begging the local grocery store manager to find out if they can order certain things. Then hearing him tell me no, even though the same store 45 miles away carries it on a regular basis.

So, in general, I HATE this gluten free diet! Somedays I consider giving it up and just being sick all the time. I may have already done that if it weren't for my kids!

ptkds

Nantzie Collaborator
Nantzie
Posted

1. Having to cook EV-ER-Y-THING if I want it to taste good. Gives me new respect for the women of our grandmothers' generations.

2. A loaf of gluten-free bread only lasts two days in our house, and that's if I ration it.

3. Having to explain second-hand gluten (new phrase for cross contamination) to people.

4. Not being able to just pick up and go somewhere. Have to plan food ahead.

5. Going out to eat and having to eat something boring just because it's safe.

6. Worrying that something someone specially and carefully made for me was somehow glutened anyway.

7. Being able to look back in my family history and see a lot of potential celiacs.

8. Not being able to just take the bun off a burger or pick the croutons out of a salad.

9. Realizing that celiac probably at least contributed to the death of my father, if not outright killed him.

10. That whatever "cure" they may come up with may end up getting pulled by the FDA after a couple years anyway.

:(

Nancy

Generic Apprentice
Generic
Posted

I hate that it probably killed at least 3 of my relatives. My dad and sister lives in denial even thou his grandmother was diagnosed at age 82. His mom had stomach cancer. I have it, my mom has it. WAKE UP AND SMELL THE GLUTEN for gawd's sake!

Mtndog Collaborator
Mtndog
Posted
  • Author
I hate that it probably killed at least 3 of my relatives. My dad and sister lives in denial even thou his grandmother was diagnosed at age 82. His mom had stomach cancer. I have it, my mom has it. WAKE UP AND SMELL THE GLUTEN for gawd's sake!

Now THAT is something to hate. I'm so sorry.....I often wonder about my mom (celiac runs on her side of the family but I was adopted- ironic, eh?). She died of a very rare stomach cancer but NEVER had a single symptom. I wonder if she was a silent celiac.

NoGluGirl Contributor
NoGluGirl
Posted
I hate that it probably killed at least 3 of my relatives. My dad and sister lives in denial even thou his grandmother was diagnosed at age 82. His mom had stomach cancer. I have it, my mom has it. WAKE UP AND SMELL THE GLUTEN for gawd's sake!

Dear Generic,

It really is frustrating having idiot relatives! :angry: They make up all of these rediculous reasons why the could not possibly be Celiac. Or how about when people gluten you and then lie about it when you know they did it! That is enough to make anyone irate! One thing is for sure, one day, people will have to deal with the consequences themselves. You cannot save people from themselves. Unfortunately, many people need to learn that stupidity is not a virtue! Until they do, however, they do not have the right to complain about being sick. If they are not willing to try to fix it, then they should shut up! :lol:

Sincerely,

NoGluGirl

miamia Rookie
miamia
Posted
Well- you did say you were comfortable in your masculinity. This will be the true test!

I have a few more to add:

"But I run all my pans through the dishwasher. That sanitizes them" Yeah- from bubonic plague but not gluten!

What? You're allergic to glue? Weed? What?"

"Oh right- pasta is made from wheat?"

"I assume you can't eat this huge frosted chocolate chip cookie that I brought for every one else."

I had to add this one :

"but you can have white bread"

gfp Enthusiast
gfp
Posted
*Explaining what happens when you get glutened.

agggghhhhhhhhhh

gfp Enthusiast
gfp
Posted
Dear Generic,

It really is frustrating having idiot relatives! :angry: They make up all of these rediculous reasons why the could not possibly be Celiac. Or how about when people gluten you and then lie about it when you know they did it! That is enough to make anyone irate! One thing is for sure, one day, people will have to deal with the consequences themselves. You cannot save people from themselves. Unfortunately, many people need to learn that stupidity is not a virtue! Until they do, however, they do not have the right to complain about being sick. If they are not willing to try to fix it, then they should shut up! :lol:

Sincerely,

NoGluGirl

Well I was laughing until I read that!

AGGH... Its SO TRUE.... its like people spend so long just coming up with excuses NOT to be tested....

Pretty close to this is people who are "scared of needles" ... I mean honestly... and what makes me even angrier are mom's who refuse to have their kids tested because they don't want them to get a tiny needle..?

But what really grinds my gears..... is people who come here looking for evidence to proove that their child/relative whomever is just making it all up!

There was someone posted a while ago and I didn't answer the thread which was basically that the doctor diagnosed celiac and a gluten-free diet but mom didn't do it because it was "inconvenient" ....

I couldn't possibly even begin to respond to the post...my first thoughts were that she should be locked away in prison and not ever let near a child EVER...

johnsoniu Apprentice
johnsoniu
Posted

"Now how long does it take before this goes away?"---ggrrrrrrr :angry:

jerseyangel Proficient
jerseyangel
Posted

And this gem from a relative who has an in-law with Celiac--"After you've been on the diet for a while, you can get away with having gluten once in a while".

:blink:

luvs2eat Collaborator
luvs2eat
Posted

1. Not being able to eat the rustic country loaf of bread I make, now, for others.

2. Not being able to eat the beautiful challah bread that I make, now, for others.

3. Not being able to eat at any fast food place... I don't WANT salad when I go there.

4. Not being able to eat the best bread on earth... REAL french bread in France.

5. Not being able to eat a blue box of Kraft Mac and Cheese.

6. Not being able to eat the rustic country loaf of bread I make, now, for others.

7. Not being able to eat the beautiful challah bread that I make, now, for others.

8. Not being able to eat at any fast food place... I don't WANT salad when I go there.

9. Not being able to eat the best bread on earth... REAL french bread in France.

10. Not being able to eat a blue box of Kraft Mac and Cheese or perogies or matzoh balls or rolls at the restaurant dinner table or chinese food or about a million other foods... not to MENTION all the new foods that have been invented SINCE I went gluten-free.

JennyC Enthusiast
JennyC
Posted

I hate that my 3 yr old son can't have what other kids can. Especially when we're at a B'day party and the cake theme is that of his favorite movie :( . I hate that stores have enormous bright gluten filled displays of his favorite prediagnosis foods at the ends of every aisle. It's not enough to simply avoid the cookie/cracker aisle. I know this will be a source of conflict between my boyfriend and I. At the party mentioned above, my bf had just finished eating gluten pizza and took a sip off of my son's drink. I responded "you just glutened him." I got mad at me. When he was talking about barbecuing this summer I told him that some charcoal has gluten in it. His response was that it can't be that bad. <_< Such is life. I will continue to be the best advocate I can be for my son. What do you guys do about barbecues?

Oh yes. Cooking EVERY night is the worst. Round Table used to know me by name.

NoGluGirl Contributor
NoGluGirl
Posted
Well I was laughing until I read that!

AGGH... Its SO TRUE.... its like people spend so long just coming up with excuses NOT to be tested....

Pretty close to this is people who are "scared of needles" ... I mean honestly... and what makes me even angrier are mom's who refuse to have their kids tested because they don't want them to get a tiny needle..?

But what really grinds my gears..... is people who come here looking for evidence to proove that their child/relative whomever is just making it all up!

There was someone posted a while ago and I didn't answer the thread which was basically that the doctor diagnosed celiac and a gluten-free diet but mom didn't do it because it was "inconvenient" ....

I couldn't possibly even begin to respond to the post...my first thoughts were that she should be locked away in prison and not ever let near a child EVER...

Dear gfp,

:lol: I feel the same way. It is funny, because whenever I go for blood work, they are like "Do needles bother you?" and I say "Honey, I have had a camera down my throat, up my butt, and all kinds of other stuff, so this does not bother me too much." They are like "Wow, you have been through a lot!" I learned how to not worry about unimportant stuff very quickly after all of the things I have had done to me.

People that are living in La-La Land are not allowed to complain. That is it! :angry: They are the resident experts about a disease they believe does not exist! I have better things to do than talk to these morons. People that refuse to get tested or have their children tested are just being stubborn.

I agree the worst is people coming on here trying to find proof their relative is just insane. Such people infuriate me! I would love to let them have it! I cannot believe that mother who would not put her ill child on this diet just because it was inconvenient! That reminds me of my parents! Those people should never have kids, and in my opinion, this should be considered neglect. Our diet is our medicine!

Sincerely,

NoGluGirl

Guest PhilosophyGirl
Guest PhilosophyGirl
Posted

I hate not being able to eat Subway sandwiches, and since going gluten free, the Food Network just isn't fun to watch anymore.

mamabear Explorer
mamabear
Posted
I'm sure someone must make belt clips. So right next to your phone and pager you can clip on your toilet roll holder.

Sorry to hijack, but Jestgar......your reply finally did it! Tears are rolling down my face and it feels so great to laugh!!!

mamabear Explorer
mamabear
Posted

OK, serious time.

#1 I am so sick of grilled chicken salads

#2 I am tired of being "special" during lunch time at work

#3 I am tired of one of my partners "kindly"offering to eat my portion of cake or cookies brought for everyone else

#4 I am tired of getting irritable and angry when I've been glutened

#5 I am tired of always having to read the labels, and now my arms are needing to be longer :angry:

#6 I am tired of having to explain,explain,explain.....not just to friends, family,patients, but to other doctors who should know better

#7 I am worried also about the generations to come, and what I may have passed along

#8 I am tired of my joints aching and needing injections in my hand because I have severe arthritis in my dominant hand and can't take NSAID's because of having one remaining kidney

#9 I am tired of being the only known family member.....I don't want company for my misery..I want them identified for their own good

and the last one

#10 I am tired of being tired

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

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

      By catnapt · Posted

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

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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