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

Different Reactions To Different Glutens?


SharonF

Recommended Posts

SharonF Contributor

I admit, I have not been 100% compliant. I am finding it very hard to adjust my mental attitude, since I used to be able to eat everything.

I have found that if I ingest some barley (I assume it was barley in the Steak n Shake milkshake, anyway), I have a terrible reaction--immediate cramping, diarrhea, etc. If I have wheat, however, it doesn't affect me right away, or even at all, as far as I can tell.

Do other people experience different levels of reaction to different glutens?

I suppose it's too much to hope for that I actually only have a barley intolerance, isn't it.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Depends on your tests? I suppose you could only be allergic to barley, if your intolerance test results weren't positive. But otherwise, I'm surprised, but still believe you. :-) (The reason I'm surprised is that the peptide chain that celiacs respond to is the same between the barley and wheat. Who knows... maybe it's more accessible in horedin than gliandin depending on your digestive system?)

seeking-wholeness Explorer

WOW, what a timely thread! I am in the middle of dealing with a major "accident" this morning, and I am about 90% sure that barley was the culprit that cross-contaminated my freshly-purchased bag of soy flour.

When I realized that I have celiac disease, I was virtually wheat-free already for the sake of my breastfeeding baby, so all of my reactions were from barley--or the barley scum left on my grain-cooking pot, as I reacted even to rice until I bought a new pot. Now, all gluten-free grains are fine for me. My reactions consisted of rotten-egg burps, waves of nausea, and dark brown liquid diarrhea (with severe cramping if I had actually eaten barley itself). Since I replaced my grain-cooking pot, I can remember only one such reaction, to a Walnut Acres brand juice (I suspect there was some barley malt in there somewhere; it makes more sense than wheat, I think)--until this morning.

My reaction to wheat is not so predominantly intestinal, although my stools do get quite loose and orange and burn as I pass them. Instead, I get a migraine (immediately, even before I finish eating the cross-contaminated meal), a massive outbreak of cystic and regular acne, and severe mood swings that set in three or so days later. (I have been keeping a mood/food chart, or I would never have recognized the connection between gluten and my mood swings.)

I am actually taking a double hit today, as I had a minor wheat-type accident on Oct. 7 (and so am in the mood-swing phase right now) AND I had a major barley accident yesterday that showed up first thing this morning. It's not looking like it's going to be a very good day!

--Sarah

P.S. In case anyone is wondering whether these are separate allergies, I strongly doubt it: the incident that got me looking at celiac disease in the first place was my baby's reaction to a 100% rye cracker!

pturse Apprentice

There are 2 gluten-free Luna Bars that the company told me about. They are Peppermint Stick and Chocolate Covered Cherry. They do have some oats so if oats bother you then I would be careful.

The Luna Glow bars however are gluten-free according the company. They just don't taste as good in my opinion.

My GI told me that it is not possible to ingest gluten and have a reaction w/in a matter of minutes or even hours because it takes a few days for food to get to the lower intestines. I argued with him briefly because I swear I had a reaction one night after immediately eating gluten. But what he says made sense. I could have had a mental stress reaction which induced my own fears about ingesting the gluten and thus created my own pain.

tarnalberry Community Regular

it certainly doesn't take a few _days_ for food to get through a normally functioning intesting. average clearing time for the human is 18-36 hours. Definitely less than two days. And _plenty_ of us respond to gluten very quickly.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,032
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.