Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

The Most Annoying Thing About Celiac Is...

GFreeMO

By GFreeMO
in Coping with Celiac Disease

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 59
  • Created
  • Last Reply
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 :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    2. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    3. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    4. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
    5. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,314
    • Most Online (within 30 mins)
      7,748
    Lisa Gassick
    Newest Member
    Lisa Gassick
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.