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

Have You Ever Not Gotten Sick When You Know For Sure You've Been Glutened?

emcmaster

Recommended Posts

emcmaster Collaborator
emcmaster
Posted

Is it possible?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Yup, I think that can happen. The longer you go gluten free, the more extensive the healing. In SOME people I think that the gluten needs to build up for a major reaction. In OTHERS, one crumb will do it.

Every one is different.

Ann1231 Enthusiast
Ann1231
Posted
Is it possible?

absolutely. I have to be extremely careful because I can eat gluten and not feel sick or anything. Other times I eat it and I have a really hard set-back. I know I was glutened last week when I ate out at one meal. I felt fine. Then this week I had gluten and have been suffering since. I sometimes have a hard time staying on my diet because I often don't get symptoms.

emcmaster Collaborator
emcmaster
Posted
  • Author

What if you usually react to hidden gluten, like cc? It seems odd that I could react to a crumb or particle and not react when it was a major ingredient...

blueeyedmanda Community Regular
blueeyedmanda
Posted

Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

Kassie Apprentice
Kassie
Posted
Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

same here

rez Apprentice
rez
Posted

Everyone is so different, I couldn't agree more. I've heard of a lot of people thinking they outgrew Celiac because they had no symptoms. My 8 year old was soooooooo sick and then we put him back on gluten for a challenge (after his tTG came back slightly positive after being gluten free for three months), and nothing happened. It took about a month to the day to start getting the reactions. Now he gets the tummy aches again and he has a mouth FULL of canker sores. It's still nothing like they used to be, although we found out he's lactose intolerant from a breath test. We're keeping him away from dairy or using Lactaid. It seems one of his most outward symptoms was a lactose intolerance. We are having him biopsied next week. This is one important reason I want to find out for sure, because sometimes there are no evident reactions. They say most of the people right now are asymptomatic.

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

Actually, I get MUCH sicker from CC than I do if I accidentally eat a gluten ingredient. For example, I get sick from just a crumb if I'm eating out, but if I sat down and ate a piece of pizza I probably wouldn't get sick at all. When I did my gluten challenge a year and a half ago I made it just over a month eating gluten every single day at every meal and snack before i started to get sick. When I started to get sick I only ever got really fatigued and slept a lot. I never did get the major gastro symptoms. I just couldn't deal with being so foggy and tired. If I get CC'd I generally end up with stomach cramps and diarrhea. Luckily, I don't stay sick for very long, generally not more than 24 hours. I get mouth sores too when I get glutened, but I didn't get any when I did my gluten challenge.

I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

emcmaster Collaborator
emcmaster
Posted
  • Author
I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

This makes A LOT of sense to me. Thanks for taking the time to explain it!

CMCM Rising Star
CMCM
Posted

In one of my celiac books I remember reading about a similar subject....it said the body actually has an adaptation ability....that when you eat gluten the body can over adapt to the "poison" gluten, hence you may not react, but over time you get overloaded and the adaptation ability breaks down. Something like that, it made some sense to me when I read it. I had always been puzzled by never quite knowing when I'd be affected. Sometimes seemingly not at all, other times quite severely.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    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

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.