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

My Big Mistake

positivenrgfairy

Recommended Posts

positivenrgfairy Apprentice
positivenrgfairy
Posted

I have been so guilty lately, of not asking what I'm eating because I am too embarrassed. Even in Austin, a pretty cool city, when I do ask about it people stare at me like I'm an alien.

im def. having a reaction right now bc I was too ashamed to ask.

I don't really need advice, just wanted to talk it out. I know it's my own fault.

I have been telling restaurants that I'm allergic to wheat, which doesn't help anything bc there's gluten in stuff that is wheat free.

but you all know that.

This is not my forte in life, and I don't like being thrust into a situation when I have to stand out and demand special treatment. It's not my style, man. It makes me so uncomfortable asking people to make special preparations. and my husband and I go out a lot, or we used to. I guess we should just stay in. feels like im having a neverending reaction.

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

I was there once. I am not there anymore.

When you are at a restaurant, it is their job to prepare food according to your needs. That is what you are paying them for. They can only do this if you clearly tell them what those needs are.

I have found that it makes a difference how you communicate. Most people have no idea what "gluten" is--they confuse it with glucose or glutamate (both of which are gluten-free). I explain that I have a sensitivity (I sometime use the word "allergy" even though it is not correct) to wheat, rye and barley, and so must avoid all flours and breads. It amazes me how many people don't realize that flour is wheat, or who think that white bread is not made from wheat. :huh:

Having said all that, there is definitely a better chance of having your needs understood at an independent restaurant with a chef, or a celiac-aware chain like Outback, than at a low-end high-volume chain establishment.

You shouldn't need to be embarrassed, but you will need to be expressive about your needs.

Raven's Mum Newbie
Raven's Mum
Posted

Ugghh.... I hear ya. I'm the same way. I don't like buggin' people to go out of the way for our sake and even when we do, I still worry about the cross contamination. <_< We've just decided that on the rare occasion that we do go out, that we'll bring something for my daughter. I'm waiting for some restraunt to have an issue with us bring ''outside food''! lol

haleym Contributor
haleym
Posted
I have been so guilty lately, of not asking what I'm eating because I am too embarrassed. Even in Austin, a pretty cool city, when I do ask about it people stare at me like I'm an alien.

im def. having a reaction right now bc I was too ashamed to ask.

I don't really need advice, just wanted to talk it out. I know it's my own fault.

I have been telling restaurants that I'm allergic to wheat, which doesn't help anything bc there's gluten in stuff that is wheat free.

but you all know that.

This is not my forte in life, and I don't like being thrust into a situation when I have to stand out and demand special treatment. It's not my style, man. It makes me so uncomfortable asking people to make special preparations. and my husband and I go out a lot, or we used to. I guess we should just stay in. feels like im having a neverending reaction.

Im in the same boat as you now... I am SOOOOOO incredibly self conscious about my gluten intolerance! Do some role playing and eventually you will get the hang of it! I am finally getting up the nerve to tell my fellow employees at work the reason I dont eat the potluck food and the pizzas that they order! The more often you talk about it, the easier it gets.

Good luck!

Haley

mushroom Proficient
mushroom
Posted
I am finally getting up the nerve to tell my fellow employees at work the reason I dont eat the potluck food and the pizzas that they order! The more often you talk about it, the easier it gets.

My goodness, yes, you must talk about it. It is not something to be ashamed of and keep to yourself. Yes, you are drawing attention to yourself, but you do have to get over it, and yourself, and just accept that that is the way it is. And with practice it does get easier.

nu-to-no-glu Apprentice
nu-to-no-glu
Posted

I know, I know...my husband and I went on a date last night and I had the manager and chef at the table, and I just kept saying, "I'm sorry". I hate all the attention and drama (and sending the waitress back and forth). I've been really researching the internet and finding all the local and chain restaraunts that offer specific menus. I've also called ahead when my team at work went out to eat to avoid making a scene, and the darn chef kept coming out to check on me and talk to me. I felt so embarassed, but he was really excited to accomodate me :) I think the more places we go, the easier it'll be. Finding those menus online has really helped a lot. It is really annoying, but I'd rather not be sick. And, I'm finding that a lot of the wait-staff at places we go are already knowledgeable... so, you aren't the first to ask...my biggest beef is that at a lot of places, they always recommend fish! Me no likey! (But, I almost didn't ask last night and ordered chicken I thought would be ok, until the chef told me the marinade had gluten in it. I'm glad I asked!)

momxyz Contributor
momxyz
Posted

A month ago I went out with friends and I definitely did not want to draw atention or make a big deal! I didn't want to be different - I just wanted to have fun. I ended up studying their menu on line and contacting them a few days ahead of time. Basically I picked possible selections and reviewed these with the staff, to ensure all ingredients were gluten free. They were knowledgeable and helpful and by preparing ahead, I was able to relax and enjoy.

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

Celiac.com Sponsor (A8-M):


laughingduck Rookie
laughingduck
Posted

I have a shellfish allergy and am also shy to bring this up and stand out at restaurants. What I often do is look over the menu and see what I want quickly, then get up to use the washroom and on the way stop the waitress to make her aware of my allergy and ask that she lets the chef know. This way I don't feel like I am making a big fuss in front of everybody, but I am still being safe. Don't worry you'll get used to it!

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. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.