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

Trying To Dine Out Gluten Free


RebeccaMSL

Recommended Posts

RebeccaMSL Rookie

Hi, I am new to this forum. I have a question about the allergic response to gluten and wonder if anyone experienced this same thing? I was diagnosed with celiac in Nov of 05 and have been trying to be gluten-free since then. (Had Positive biopsy and positive blood tests). I was symptomatic and undiagnosed for decades, and had daily diarrhea and stomach pain, nausea and cramps, and never weighed more than 115 except when pregnant. I also have had type 1 juvenile diabetes (insulin dependent) for 25 yrs so my doctor kept thinking I had gastropresis or some problem due to diabetes complications. Once I went on the gluten-free diet, I started feeling much better and the d. etc stopped and I have been relatively intestinally happy. BUT, now when I accidentally ingest gluten I get REALLY violently ILL, and its awful!

This past weekend my husband and I went out to a v. nice expensive restaurant with friends, and I discussed my meal and the menu with the chef and showed him my celiac card with all the explanations of what is allowed and not allowed. I had a delicious meal of swordfish, yukon poptatoes, tuna sushi w. wasabi, and creme brulee for dessert. We got home around 11 pm and by 2am I was vomiting and had d. and was shaking, sweating, tachycardic. I continued to be ill until 5 am, and then once it stopped, I was fine again, although my muscles hurt from the shaking. Even when I was eating G every day, I was never vomiting and shaking and violently ill; my reaction was more mellow, and even though I had d. every day it was not this horrible. It seems that my allergic response has gotten more pronounced and I am wondering why. This was not food poisening-Others ate what I ate and no one was sick but me. I realized yesterday that the swordfish had a caramelized bourbon sauce, and this must be what did it.

I've had this reaction now twice, the other time from tabouli which I forgot had wheat. I was violently ill with vomiting and diarrhea, shaking and sweating, and it was just as awful. (Stupid mistake but I was probably less than 6 months gluten-free and was lulled into a trusting state of mind by a salad bar...)

Does anyone know of anything to lessen this horror show? I seriously do NOT want to go thru this ever again. Why would my reaction be so severe now that my whole system is a lot healthier? My biopsy showed "complete atrophy" of my duodenum and maybe now that it healed its better able to defend itself?

I'm sad because I love to go out to eat and there are a handful of gluten-free restaurant menu options in my area, but The Outback gets old and Legal Seafoods is an hour away... I also would like to have something to take if I do get glutened again, something to move everything out as fast as possible, without having to vomit, which I hate hate HATE.

Thanks for any thoughts you have. Sorry to be so candid about the gross stuff but I need to be able to ask this someplace!

Rebecca


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

Unfortunately we're putting our health into someone elses hands when we dine out. I wish there was a magic wand one could wave to make it different than it is. I don't have much to add but my sympathy and wishes for a speedy recovery.

Some people react worse to gluten when they're not constantly exposed to it.

TinkerbellSwt Collaborator

I am not sure why.. I know there are more knowledgable people here to answer the question about symptoms being worse after being gluten free for a bit. I know from my own experiences too, the longer I have been gluten free, the worse my symptoms are when I do get glutened.

I know a lot of people here have that same reaction. I am sure someone else on here can answer this for you.

I hope you feel better :)

Jestgar Rising Star

Since the response to gluten is an immune response, not an allergic response (well, you might have both), it might help to think of this as your body responding to something attacking it. Like when you get a stomach virus. Your body "knows" its a bad thing and does everything it possibly can to get rid of it. Maybe some people's bodies try harder to protect them ;)

hez Enthusiast

The reality is that eating out is risky for celiacs. It is one aspect of this disease that I hate. I went out and spoke to the manager, went over ingredients, very careful-I still got sick (I had a salad)!

I think of eating out like going to Vegas. It is a crap shoot, sometimes you win sometimes you lose. We really do not eat out that often (I am not a gambler).

I do hope you feel better soon.

Hez

Robert Brown Newbie

This is precisely the bewildering reaction I just complained about in my topic, "Vomiting Reaction??" Sorry to hear you're dealing with it too - my body is simply rejecting the food!

Rob

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,730
    • Most Online (within 30 mins)
      7,748

    Sumac
    Newest Member
    Sumac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.