Jump to content
  • 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):

Hard day


Sophierb

Recommended Posts

Sophierb Newbie

I’m embarrassed to make this post. But today, I had my first panic attack about celiac disease. 

My husband wanted to try Whalburger. But since being diagnosed I haven’t eaten anywhere except the 2 exclusively gluten free places in my city. He talked to a manager before getting us a table and he was feeling great about their awareness for allergy prep. I was not. We had our 3 small children with and I’m not sure if it was the combination of the commotion with them or all the thoughts buzzing in my head about how I could get glutened. But I thought I was going to throw up on the table. I’m also 11 weeks pregnant so being careful now is important because of that as well. I ended up telling my husband I had to get out of there as my breathing sped up and the dizzy-panic feeling really sunk in. 

I barely made it out before the tears hit. I’m so incredibly embarrassed. Will this get better? I was diagnosed 9 months ago and have mostly coped fine. But sometimes it’s really hard. I cried the drive home feeling sorry for myself about all the foods I won’t have again and how “unfair” this is. Pathetic.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
(edited)

Do not be embarrassed!  You should follow your intuition (your gut feelings).  Men do not have that same instinct.  You have to not only protect yourself, but your unborn child and manage your three kids.  You have a lot to handle on top of avoiding gluten!  

Anxiety is so common with celiac disease too.  It will improve with time. 

I just went out to dinner with family and friends last night.    I just ordered a drink and ate at home.  The restaurant has done a good job in the past (they have a gluten free menu), but my glutenings have triggered not only celiac disease, but ramped up (actually developed an extra one) my other autoimmune diseases.  Six months of daily hives was NOT fun last year.

So, stand your ground.  Be prepared to bring some food with you or eat before.  Stay safe.  Take chances when you are well and you know you can handle the outcome if things go bad.  

My big freezer has been invaluable.  I have meals, gluten-free goodies and items always on hand.  So handy if you can afford one.  I save a bundle on meats (purchased on sale) too.  It pays for itself, especially with a large family.  Consider getting one!  

And...yes, things will get better, I promise! 

 

Edited by cyclinglady
Ennis-TX Grand Master

I get panic attacks entering other restaurants or kitchens myself, I also have a corn allergy so yeah that is another of my concerns.

Your right, to have done what you did, I would never trust a whataburger...I miss them but can make my own at home....though I will admit their thin and HUGE wide patties are something to be missed...hard to make those. I would not rust any non 100% gluten free place anymore...I get about 4-6 weeks of diarrhea now days after a exposure and random flares with my other auto immune disease UC.

Perhaps if it makes you feel better do it at home. burger night, burger salad night (I did chopped patties over iceberg with the fixings salad bar style and told them build it like your burger) makes a new fun spin on it.

Heck working on my own gluten free catering business and hopefully a food truck in the next year with bunless burgers as a  featured item on the menu. Fun to to fix also with 2 methods, if you have deli wrappers you can use iceberg chunks for the buns, and load it your burger up and use the wrap/sleeve to keep it together and you hands clean. I find better burger large leaf lettuce works as a big lettuce wrap for a burger to hold all the fixing with less mess otherwise.
Of course canyon house makes some good buns but I avoid those processed things myself.

Bree J Apprentice

Yep, I got a nice solid panic attack when my brother invited me to have dinner with him on his birthday at a Japanese hibachi restaurant. They have gluten free soy sauce, but it's a shared Grill. That ended up being okay, and he actually sanitized my corner of the grill, and I watched him do it, so that was nice. But I had no idea they would do that for me, so I panicked for a full two hours before going, but I wasn't going to say no to my brother's birthday. I ate before I went, just in case. You are not alone in this. I'm so sorry you have to deal with it, I know how much it sucks. You are so strong!

Ennis-TX Grand Master
3 minutes ago, Bree J said:

Yep, I got a nice solid panic attack when my brother invited me to have dinner with him on his birthday at a Japanese hibachi restaurant. They have gluten free soy sauce, but it's a shared Grill. That ended up being okay, and he actually sanitized my corner of the grill, and I watched him do it, so that was nice. But I had no idea they would do that for me, so I panicked for a full two hours before going, but I wasn't going to say no to my brother's birthday. I ate before I went, just in case. You are not alone in this. I'm so sorry you have to deal with it, I know how much it sucks. You are so strong!

Great thing about those industrial stainless griddles, 500F+ destroys the gluten protein, and those suckers on max can get 550-600F But still need to be careful in other departments.....been there on that note with the Decon phase....recall accidentally glutening a non stick pan early on after dia and panic attacks about throwing stuff away....Peace of mind is priceless, when it doubt throw it out.

VLG Newbie

You shouldn’t be embarrassed. Honestly, whenever you eat out, there’s a chance of being glutened. I usually do not eat at restaurants. I will just order a drink and eat when I get home. You’re family and friends should understand and just enjoy your company.  

icelandgirl Proficient

You poor thing! I have had that happen too! It's ok.  I now only eat at dedicated gluten free places as I have been glutened while eating out.  Both of the places where I was glutened are supposed to be very knowledgeable about gluten free.  When I am glutened it is terrible.  With 3 kids to take care of I can't afford to be sick like that.

So now I eat before I go.  I get something to drink and keep a snack in my purse in case.

You definitely did the right thing for you!


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442

    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...