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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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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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