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The Most Annoying Thing About Celiac Is...

GFreeMO

By GFreeMO
in Coping with Celiac Disease

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love2travel Mentor
love2travel
Posted

Although I love murder mysteries, I dislike being a detective when it comes to eating out. I have yet to attend a social function such as a church potluck or wedding since my diagnosis this year. My husband and I get invited out less often; in fact, rarely.

I do not like drawing attention to myself in restaurants when questioning the server and/or chef (though I always call ahead). But I still do it because I must. As I have severe chronic pain, I always carry around my lumbar support so I feel like a sickly chick with my celiac, lumbar support and having to get up and walk around several times during the course of dinner. :( I do not want it to be my identity from others' perspectives. There is far more to me than celiac disease!

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  • Replies 59
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beebs Enthusiast
beebs
Posted

Oh god - I am with you love2travel. I hate hate drawing attention to myself when eating out. I hate being "the gluten free one" hate, hate, hate!

Ellie84 Apprentice
Ellie84
Posted

Agree with Glutendude: it takes all the spontaniety out :( Also, I'm in constant fear of being glutened because my symptoms are so severe.

Glutin-Free Man Rookie
Glutin-Free Man
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 get that. I used to feel the same way.

Now I'm gluten-free, AND dairy-free, AND nightshade-free, (and probably xanthum gum-free). I know people who are gluten-free, dairy-free, and corn-free.

Note that none of this is by choice.

It's actually nice to be able to eat some things they sell at the supermarket.

(although nightshade-free means I can't eat most of the gluten-free products that are on the shelves, as most of them contain potato starch.)

MenHen Rookie
MenHen
Posted

Traveling and spontaneity for sure. I have not done much long distance travel yet, but I am nervous about that. I hate all the planning and packing I have to do to go on short trips to like my dad's house.

I also do not like being the center of attention at all. All the questions and being singled out is not fun at all to me.

love2travel Mentor
love2travel
Posted

Oh god - I am with you love2travel. I hate hate drawing attention to myself when eating out. I hate being "the gluten free one" hate, hate, hate!

I know - it can be annoying and frustrating at times. And some servers are excellent at making me feel "normal" by discreetly offering house-made gluten-free breads for bread service, for example, without drawing unnecessary attention. Others make such a big deal out of it which attracts attention I do NOT want.

tennisman Contributor
tennisman
Posted

All the extra health problems :(

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gfpirate Rookie
gfpirate
Posted

Hey there, I'm new to this site, but have been gluten-free for 8 months now:)

I'd have to say the most annoying thing about Celiac is everyone else's cluelessness! For some reason, it always bothers me when I go to a restaurant and the waitstaff has no idea what I'm talking about when I ask about gluten free options. But I know that this is a double standard, because before I was diagnosed, I wouldn't have known what gluten is either. :P However, I do believe it is important for waitstaff to know about common food allergies. I am servsfe certified myself, and throughout the course we learned about all the major allergies and how to avoid CC. I know it is more or less of a lie, but I usually just say I have wheat allergy, because it is easier than to describe Celiac disease. I've noticed that people tend to take allergies more seriously than a disease they've never heard of, even though it's probably the opposite!

curlyfries Contributor
curlyfries
Posted

Knowing that my Mom was never Diagnosed with Celiac...

Me too....sadly.

curlyfries Contributor
curlyfries
Posted

All the extra health problems :(

.....and the other food intolerances that appear.

....and having to prepare every meal. Before gluten free, I had reached a point in my life where I had decided that I was tired of cooking. Kids are grown....I'm just going to slack off. Oh well....I probably would've been eating a lot of processed food. I am eating much healthier this way.

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • 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.
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