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

Has Your Reaction To Gluten Changed?


GFAnnie

Recommended Posts

GFAnnie Explorer

I ask this because I'm newly diagnosed and I have very mild symptoms, apparently.  Just wondering, from those of you who have been gluten-free for a while now, when you do get accidentaly "glutenized," has your reaction gotten worse, not as bad, or is it unchanged?  Is it always the same reaction?  I'm weirdly kind of hoping I get a little more of a reaction (but not too much!) simply so I can be aware when I've accidentally ingested gluten. It seems like there's a lot of "see what your body tolerates" when it comes to some of the grey area products. (soaps and shampoos, makeup, oats etc.)


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



Celiac.com Sponsor (A8-M):



MGR Apprentice

Don't worry you will know when you've been glutened! Ive been gluten-free since November now and although I am generally fine with the food I have cooked myself, I still keep glutening myself with things I think should be gluten free but turn out not to be. My last one was from a glass of fruit juice... First think I get is a burning sensation in my tummy which turns into constant tummy ache which could last for two days, at the same time I get blisters inside my mouth, shooting pain in my joints, spinning head, exhaustion, terrible mood.... And this lasts for days or weeks. Juice does not naturally have gluten, but often they add fiber to it to am e it more healthy.... and this tends to be wheat based. Disaster for any individual with gluten intolerance! Yes, my reactions have become worse since I have become gluten-free and also I seem to react to the tiniest amounts, even a breadcrum .... But individuals react differently- Becoming gluten-free is such a steep learning curb!! Good luck and remember we are here to encourage you along!

NoGlutenCooties Contributor

Before my diagnosis I was asymptomatic - no intestinal issues, no nothing.  I've been gluten-free since the beginning of Oct. and 3 months into it I accidentally glutened myself with a tiny, tiny taste of tabuli - that had bulgar wheat in it (we got it mixed up with the quinoa salad) - anyhow... I had a definite, recognizable reaction.  Bloating 3 hours after ingestion (as in I looked 5 months pregnant - and I'm normally very slim), then woke up with the clammy, sweaty chills like you'd get with food poisoning or the flu.  Was exhausted for a good 3 days and generally "off" for close to a week.  And very irritable.

 

So I went from no symptoms to food poisoning-like symptoms in the matter of 3 months.

1desperateladysaved Proficient

My symptoms before gluten free were non-distinct and constant.  I had especially bloating, mind fog, and fatigue.  Now when I get glutened I notice swelling, bloating, cramping, and have diarreah four days later.  I am really thankful that my symptoms now come in go with more gusto.  I am absolutely motivated to avoid gluten.

 

D

nvsmom Community Regular

Like desperateladysaved said, I think we just notice reactions a bit more because we are in a healthier place.

 

Think of health as a ladder. When we are in good health we are higher on the ladder. When in poor health we are lower on the ladder. When we get glutened it knocks us down to lower health. If we were already low on the ladder, the fall isn't noticeable but when we are higher up, we feel the fall more.

GFAnnie Explorer

Thanks everyone.  This makes perfect sense and in an odd way I'm glad to know I'll probably have distinct symptoms once I'm sucessfully gluten free.  I think it's pretty much necessary to keep motivated and to understand my body and how safe the foods are that I'm eating.

livinthelife Apprentice

I ask this because I'm newly diagnosed and I have very mild symptoms, apparently.  Just wondering, from those of you who have been gluten-free for a while now, when you do get accidentaly "glutenized," has your reaction gotten worse, not as bad, or is it unchanged?  Is it always the same reaction?  I'm weirdly kind of hoping I get a little more of a reaction (but not too much!) simply so I can be aware when I've accidentally ingested gluten. It seems like there's a lot of "see what your body tolerates" when it comes to some of the grey area products. (soaps and shampoos, makeup, oats etc.)

This is an interesting question.

 

I get so very sick and have to stay in bed the entire next day and then am tired and foggy headed for two more. Sometimes I think I am *too* careful but then I remember how horrible it is when I let my guard down. I can look back at my old food journal and am amazed at the symptoms I had that i had no idea were gluten related.

 

I always wonder how some folks who are celiac can tolerate so much more gluten than I can. Isn't it still hurting them? Can a body tolerate a certain amount before any damage takes place? 


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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.