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

Reactions


Tim-n-VA

Recommended Posts

Tim-n-VA Contributor

Prior to diagnosis I would have said I had no GI symptoms. Liver tests lead to blood tests which lead to biopsy. In retrospect those things I thought were a "24 hour flu" or "something spoiled" were likely gluten in hindsight (especially the ones after drinking wheat beer). :P

Having been gluten free for about a year, I have symptoms with small amounts of cross-contamination from wheat. Today, I wasn't paying close attention and took a bite of candy containing barley malt. I've had no symptoms yet (still plenty of time).

I will not routinely eat barley because I could easily be having internal reactions without external symptoms. It did make me wonder if people find they react worse to one form of gluten versus others?


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



Celiac.com Sponsor (A8-M):



holiday16 Enthusiast

This is basically what I was asking the other day, but didn't get any replies so I did a bit of searching and basically what I found is that barley has a much lower gluten content than wheat. I was asking because I had accidentally had something that had been produced on the same lines as wheat products and was sick for 3 weeks. Then I accidentally had something with barley in (it was under natural flavors and I missed it) and the reaction was only for a couple days and not nearly so severe.

I will say that finding this out makes me feel much better about being able to avoid gluten. I'm still just as careful, but I don't feel as paranoid that if I accidentally misread a label and have something with barley in I'm going to be sick for weeks. My daughter had the same thing I did with the barley in and she never reacted which surprised me, but she's not as sensitive as I am either.

aikiducky Apprentice

I guess it's must be an individual thing - I seem too have maybe even more symptoms from barley then wheat, though it's hard to say because i haven't had any glutenings for a while that i know of.

Pauliina

Yellow Rose Explorer

I was just recovering from being glutened on Sunday. Wheat is definitely the worse for me. My reactions are getting longer and more painful with each glutening. Don't have the gut reaction I have joint and muscle pain that feels like I am being pulled apart with burning and spasms.

Yellow Rose

gfpaperdoll Rookie

I am 60, when I was 25 I tested allergic to barley & oats. For me barley is a killer & I still remember the last bagel I had about 15 years ago (they all have barley in them) I was sick for three weeks & the barley taste was in my mouth for at least at week. This was still when I was eating wheat on occasion right before I figured out that I had an "allergy" to wheat.

CMCM Rising Star

This can all be so tricky. I had lifelong digestive symptoms which I mistakenly thought was entirely due to dairy. I now know it was wheat. Wheat didn't always make me sick, which added to the confusion. Later I read that your body continually tries to adapt to the invader gluten, sometimes with more success than others.

Then if you go gluten free, you can actually become more sensitive and reactionary than you were when eating it regularly. Perhaps because you have had time to "adapt" with just sporadic exposure.

I've also noticed a change in reactions. Still moderate digestive upsets, but my latest reaction moved into the area of joint aches and pains. Very painful, and this scared me more than the digestive stuff did (perhaps because I'd lived with it for so long!).

And some things always bothered me more than others. Regular soy sauce, for example. I'm not sensitive to soy, but the wheat used in fermenting the soy sauce absolutely killed me. Possibly it was the combination of things. I know with other foods, certain combinations can be very deadly, digestively speaking.

Prior to diagnosis I would have said I had no GI symptoms. Liver tests lead to blood tests which lead to biopsy. In retrospect those things I thought were a "24 hour flu" or "something spoiled" were likely gluten in hindsight (especially the ones after drinking wheat beer). :P

Having been gluten free for about a year, I have symptoms with small amounts of cross-contamination from wheat. Today, I wasn't paying close attention and took a bite of candy containing barley malt. I've had no symptoms yet (still plenty of time).

I will not routinely eat barley because I could easily be having internal reactions without external symptoms. It did make me wonder if people find they react worse to one form of gluten versus others?

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.