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The Most Annoying Thing About Celiac Is...

GFreeMO

By GFreeMO
in Coping with Celiac Disease

Recommended Posts

mushroom Proficient
mushroom
Posted

Well, obviously if eating gluten free is not the entire solution and it does not appear to be other intolerances, then further investigation is required, which would probably include scoping. But the scoping can be done independent of celiac testing.

I agree with your order of investigation: blood test first - if negative, gluten free; if still problems, further investigation possibly including scope. And quit talking about "allergies" when you are referring to celiac :blink::P

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  • Replies 59
  • Created
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Rebecca92 Apprentice
Rebecca92
Posted

The delicious smell of all your old favorite gluteny foods and knowing you cant have them

Meatballman Rookie
Meatballman
Posted

Watching friends and family enjoy foods that I used to.Having friends and family appologize to me while enjoying the foods i used to.

Poppi Enthusiast
Poppi
Posted

Being scared to travel.

My husband and I have dreamed for many years of travelling extensively in Asia. Our oldest kids will be leaving home soon and we had hoped to start travelling with (or without) the two youngest in the next few years. I've realized that eating in Asia will be so difficult. No street food, huge language barrier, ingredients in CJK characters... and so on and so forth.

We hope to take cruises and travel in Europe instead so I can run a better chance of not getting sick but it's hard to let that lifelong dream go.

lovesaceliac Newbie
lovesaceliac
Posted

Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

Meatballman Rookie
Meatballman
Posted

Please give some advice Meatballman to me, the gluten-eating wife of a super-sensitive celiac...I find myself on occasion apologizing to him when I eat gluten in front of him. I can't help it! I know he wishes he could share...what's more annoying - me turning down his suggestion that I have that cinnamon roll (becuase he feels guilty if I don't eat what I can) or me eating it in front of him (then I feel guitly while I do.)

I guess for me.I wish it could just be like it used to be.I didnt know I had this until I was 41.I was a big guy with a huge appetite.Now I feel weak and like everyone is always trying to please me.Sounds silly but I wish everyone including my gluten eating wife and daughters would just eat stop saying they are sorry.I cant speak for your husband.If he is like me Im sure he knows you are sorry and support him.I think he would want you to enjoy that cinnamon roll.To answer your question the annoying part are the apologies.Just act like you always have and eat what you must.I think drawing attention to it all the time frustrates me.Possibly he may feel the same.Anyway Im rambling now.Hope I helped.

misslexi Apprentice
misslexi
Posted

That sometimes you have to lie and say you have a wheat allergy just to get people to take you seriously.

People calling gluten free diets/gluten free products in grocery stores just a "fad".

When the person closest to you in the whole entire world doesn't take you seriously and says you'll grow out of it. Despite already being an adult.

How so many products on the shelves out there are full of weird stuff. Sometimes you just want a brownie to taste like a brownie, not a fig newton.

When people buy you gluten free stuff without being asked. And then expect you to give them money for it.

Maybe this isn't an annoying thing exactly, but coming to the realization that the majority of the people in the food services industry know so little about the food they are serving you it should make everyone run screaming for the hills.

And I could go on lol. I can't pick a most annoying thing.

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Googles Community Regular
Googles
Posted

I hope it's okay that I add another one.

Other people's pity when they are eating and you can't, and the look they give you.

mushroom Proficient
mushroom
Posted

When someone thinks that just because it is gluten free you can eat it :ph34r:

Laurentru Newbie
Laurentru
Posted

Losing my chance to be a humanitarian aid worker in third world countries.

T.H. Community Regular
T.H.
Posted

I ate boring food while everyone around me was able to enjoy a better meal, and I STILL got sick.

My child has to fight tooth and nail to keep her food safe, because the in-laws can't seem to understand cc and simply brush the gluten crumbs away from her food, insisting it'll be 'fine.' (...and they wonder why I won't let them babysit anymore :rolleyes: )

My kids are in pain and it's because I made the wrong decision about the safety of the food I allowed them to eat. :(

Poppi Enthusiast
Poppi
Posted

I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

lynnelise Apprentice
lynnelise
Posted

Constant planning.

Not wanting to cook but being bored to death of the 3 places I can safely eat.

How my in-laws put ritz crackers in EVERYTHING and then act like they "forgot" I couldn't eat this or that.

AVR1962 Collaborator
AVR1962
Posted

Having to always ask questions, read labels and being so careful. I miss being able to eat anything I wanted without thinking about it!!

Celtic Queen Explorer
Celtic Queen
Posted

Paying twice as much for a box of gluten free bisquick that's 2/3 the size of a regular box.

Worrying about what I'm going to eat at social event or if I can eat anything at all.

Having to become a high-maintenance person when I go out to eat. I'm not that way at all. It's hard having to be particular about things.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

I hate going to the store and finding delicious-looking gluten-free things that either contain soya, contain dairy, or are CC'd with soya/dairy. :(

Poppi Enthusiast
Poppi
Posted

I hate going to the store and finding delicious-looking gluten-free things that either contain soya, contain dairy, or are CC'd with soya/dairy. :(

Fair enough. When I'm looking at the everything-free cookies that cost $7 for a box of 6 I try to remind myself that there are people who are extremely thankful that these cookies exist for their kids (or themselves).

It's a petty pet peeve especially since I am able to make pretty much everything from scratch anyway. I should just be thankful I can have soy and dairy.

Di2011 Enthusiast
Di2011
Posted

itching

Di2011 Enthusiast
Di2011
Posted

eating rice, again :lol:

ladymiss Rookie
ladymiss
Posted

thinking and over thinking.

thinking.....

-can i eat it?

-what can i eat? here? now? at that store? at that restaurant? at his/her house? at the party? at the event? on vacation? on the road? in the car? as a snack?

-planning ahead....hmmmm what/how/when will i be able to eat?

-if i eat it, will i... be sick? from what? and for how long? will i have an allergic reaction? is my allergic reaction 'real' or psychosomatic? is the anxiety a reaction to the food i've just consumed or to the state of mind i've put myself thinking about eating the food i've just consumed....

-what will they think? im a hypochondriac? a health nut? a nut job? telling the truth?

-how do i tell them i can't/won't/don't want to eat the food they've prepared?

-how will i find a compromise in this scenario...(fill in the blank)....and not draw too much attention to myself, feel comfortable, help others to feel comfortable, not be rude AND find something to eat!!! :rolleyes:

too much thinking.....

GottaSki Mentor
GottaSki
Posted

Hands down...watching my teen-aged sons struggle with the "oh goodness that pizza looks and smells great" while hanging with friends. I got so sick that I'm grateful for health and being in control of my food....yet for my kids the symptoms are bad but not incapacitating...very tough to stick to it in social situations.

Katrala Contributor
Katrala
Posted

I do have another pet peeve actually.

I would like to go to the store and buy some gluten free cookies/bread/cereal/cake mix/snacks/frozen meals. Not gluten free, corn free, dairy free, egg free, organic, vegan, fat free, peanut free, seed free and fair trade.

It's not that any of those other things are bad but I get annoyed when all the "special diet/allergy" groups are lumped together into one really expensive and substandard product.

I like eggs and dairy and nuts and meat and fat in my food.

Same goes for cookbooks.

I'm with you.

I know there are people who appreciate these things, but it annoys me to have dietary needs lumped in with dietary choices.

I don't have a problem with anyone who wants to eat Vegan, Organic, etc. - that is their personal choice - but I don't want to be grouped in the same category.

GlutenDude Newbie
GlutenDude
Posted

The death of spontaneity when it comes to eating.

luvs2eat Collaborator
luvs2eat
Posted

That you cannot eat gluten...c'mon...this was obvious. :)

I'm w/ you Chad. It's a no brainer.

How simple my life was before celiac and there are some foods and activities I miss so terribly...

My mom's thanksgiving stuffing

My love of baking

Eating out w/o difficulty

etc, etc, etc.

mushroom Proficient
mushroom
Posted

Always having to be the food preparer, even when you are "going out" to eat.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Finding gluten free ingredients

      By trents · Posted

      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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