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 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.

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.