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

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
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