Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Determine How "sensitive" I Am


BeFree

Recommended Posts

BeFree Contributor

The last time I ate out, I went to Boston Market and I did not know yet about the "don't even let the food touch your bread" thing.

The cornbread was on my plate touching my food, and I just put it to the side and ate the rest of my food (oh so carefully researched chicken, steamed veggies and mashed potatoes without gravy.) I got the popping and gurgling in my stomach afterwards, but really no pain, it was a noticeable reaction, uncomfortable but mild. It was not like the last time that I ate a whole piece of bread and was in extreme pain. Does this mean I am more mildly sensitive to gluten because I could tolerate the bread touching my food, or severely sensitive because I reacted to the smallest bread crumb?

I'm eating there again tonight and will tell them not to put the bread on my plate this time, but I'm really wondering about the sensitivity issue and how careful I need to be.

I used to love eating out and I hate it that eating out is scary now. Any advice about your symptoms and experiences would be most appreciated. Thanks!


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

I just tried Boston Market for the first time on Friday. I looked the menu up online first, so I'd know what was safe. I have the extra whammy of no soy too, which restaurants sure do like to use.

I told the boy when I went to place my order that I have a severe wheat allergy(so he'd take it seriously)and had gone online to see what was safe. He grabbled a sheet of paper that had the same info as on the internet. I told I knew the cornbread wasn't safe, so he didn't put it on my plate. The server was very careful.

I had the turkey, steamed veggies and creamed spinach. I didn't have any reaction at all.

You don't really want to have any contamination, and it's hard to know in a restaurant setting at just how much there is. Look at the location of the sides you want to see if it's likely that crumbs have fallen into them as the cornbread or stuffing was dished up for other people.

Good luck!

espresso261 Rookie

This is an interesting topic--- i've only been diagnosed a few months. i've never been noticably ill from a crouton or a crumb... in fact, it was usually large helpings of pasta or bread that would trigger a reaction. Will this change now that i'm gluten free? Will I become overly sensitive? The GI effects were never my main concern; does anyone think it could develop into that over time?

What has happened to other people? Is there anyone out there whose sensitivity has stayed the same over the years? Or does it always get worse?

just curious how its affected others over time? (mostly curious if there are people who have NOT become more sensitive over time?)

BeFree Contributor

Well espresso, I thought it would be an interesting topic too....I thought everyone would want to tell their story and talk about their symptoms! Guess it's just us here though LOL! I'd be interested though to know how different people seem to rank the severity of their symptoms, and how it compares to what I'm experiencing.

BethM55 Enthusiast

This is an interesting topic--- i've only been diagnosed a few months. i've never been noticably ill from a crouton or a crumb... in fact, it was usually large helpings of pasta or bread that would trigger a reaction. Will this change now that i'm gluten free? Will I become overly sensitive? The GI effects were never my main concern; does anyone think it could develop into that over time?

What has happened to other people? Is there anyone out there whose sensitivity has stayed the same over the years? Or does it always get worse?

just curious how its affected others over time? (mostly curious if there are people who have NOT become more sensitive over time?)

This is a very interesting topic!

I am self diagnosed gluten intolerant. I have gotten more sensitive since I've been gluten free (3 years, I think). However, my reactions usually don't show up for 12 to 24 hours, which makes it very hard to figure out what I am reacting to. I count my blessings that I am not super sensitive, as the stories from some members here are downright scary for me to read!

That said, I don't think I'm any more sensitive now than I was a year ago, so perhaps the increased sensitivity peaks and stabilizes after awhile.

Occasionally I'm tempted, just a little, to try a gluten trial, but I've gotten myself so psyched about avoiding it that it would have to be a blind test, with me not knowing I'd eaten it, or I'd probably make myself sick just worrying about it. :lol:

I hope others reply to this thread. I'm interested in what they have to say.

T.H. Community Regular

I'd say you sound like you're about in the middle, sensitivity-wise. At least, that's what it seems to me. :-)

And comparisons, huh? Okay, I'm gonna do 4 experiences at once - there's a lot of us in my family! :-D

My father: developed an ulcer and that's how he got diagnosed, but never had gut pain that he associated with a food, you know? After a few months of going gluten-free, he was still cheating periodically, and if he cheated, he would get the big D and some stomach pain for a couple days. He ate gluten-free foods and would eat out a lot. After a few years, his reaction is more gut issues, lots of gut pain, run down feeling, so he no longer cheated. He still ate gluten-free products and ate out a lot. A few years after that, he feels even worse if he gets gluten, and now he has reacted periodically to restaurant gluten-free food, when it gets a bit contaminated, so he doesn't eat out as much any more. Still feels good with gluten-free food, though.

My brother: he was starting to have nausea after eating gluten when he was diagnosed (1 1/2 years ago). His symptoms have gotten a little worse over the last year or so, but he can eat out well at restaurants with gluten-free menus, and has gotten sick a few times at restaurants that have gluten-free items but aren't as careful with Gluten cc. He can eat gluten-free products just fine, usually, although a few times he's gotten ill from them.

My daughter: She had no gut pain when diagnosed (she was tested because family members were coming back positive with it). We had to track down some food allergies along with the gluten to have her feeling better (less exhausted and such). She started having gut pain around 6 months gluten-free, and it was happening all the time. We discovered that she seems to react to less than the gluten usually allowed in gluten-free products. For a while, it looked like most products that tested at <10 ppm she could eat a normal helping of with no issues. Then she started getting sick with those, too, and now she seems okay only with small servings of products that test at <5ppm. She could eat out successfully at restaurants with gluten-free menus at first, but after a few months, they started causing problems. She hasn't eaten successfully at a restaurant in months, now. She gets sick every time. She was getting sick every time she ate at a friend's house (bringing her own food, even) because she would sometimes touch something in the house with gluten cc on it (like a remote control) and then touch her food, forgetting to wash her hands in between. Once she started washing her hands and being very rigorous about keeping them clean, she's been able to visit friends without getting sick.

Myself: I have both food allergies and celiac disease. I had no gut pain whatsoever when I was diagnosed, and I still don't get any when I eat gluten. I have other symptoms. I have not successfully eaten gluten free products, ever. At first, it was due to allergic reactions to ingredients, but when we figured those out and I tracked down some gluten-free foods free from my allergens, I was still having problems. Finally figured out that I have similar sensitivity issues as my daughter, but I'm a bit more sensitive. With one exception, I can no longer buy produce at grocery stores. I get sick every time. I have to go to farmer's markets, interview the farmers to ensure that their mulch, fertilizer, sprays, and soaps used on the produce are free from gluten and gluten derivatives. If they are, I can eat them without getting sick. Otherwise, I start getting very ill, losing weight very quickly, and life kind of goes into the toilet. I bring my own dishes and my own food everywhere I go. I can't eat out without getting sick, even at a couple completely gluten-free restaurants in my home town.

I'd say that in my family, we kind of run the gamut of sensitivity levels, LOL. All of us react more to gluten the longer we've been on the diet, and we all seemed to get either a little or a lot more sensitive as we went on. My and my daughter's sensitivity level seems pretty rare, however. Most seem to be more like my brother or father, where you may have to be a bit more careful about gluten cc, but not crazy-careful, you know?

Lisa Mentor

Anytime you eat out you accept the risk for cross contact. Sometime you will never know what made you ill. Often times responses might vary which makes it had to pin point. I react in about 22 to 24 hours later.

Some members here have said that their symptoms appear worse since gluten free. I'm not sure why, but maybe it awareness, but maybe not - just a thought. Maybe people just feel better in general and a glutening is really apparent. Maybe they just do. B)

Also, if you have not healed, most foods you eat will create a reaction. It took me about six months of healing on the diet to know a gluten reaction.

Everyone is different.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: 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...