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

Do You React Differently To Different Forms Of Gluten?


Brrrandy

Recommended Posts

Brrrandy Rookie

It seems that I have a pretty consistant reaction to gluten overall, but it's always amazed me how much the severity can vary. Have you ever noticed that the form that gluten changes the way you react? Even if they are both essentially flour?

 

For example, there have been times when I've ingested what I know was a very tiny amount of gluten yet reacted very severely-- like when a friend served soup several years ago and included a teaspoon of flour, or when I had sushi with a tiny amount of sauce that contained a tiny amount of soy sauce.

 

Yet there are other times when I've had what would seem to be larger amounts of gluten, and haven't reacted to them almost at all-- like last year, when in a moment of weakness I ordered a breakfast sandwich, took two bites and immediately came to my senses and threw it away.  

 

It kind of seems like when it's in liquid it is way worse. But maybe I am just looking for patterns here. 

 

Curious to know if anyone else has noticed different types of reactions?


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



Celiac.com Sponsor (A8-M):



gatita Enthusiast

I can't say why. but I've noticed the same thing. I've gotten severely sick from what must have been an eighth of a teaspoon of pure wheat gluten (from a can of so-called tomato paste) in a friend's soup... but on my attempted gluten challenge, a few Triscuits didn't do as much damage.

 

Maybe it depends on how concentrated it is? After all, bread isn't pure gluten, it has other stuff in it like fiber etc.

nvsmom Community Regular

I've noticed this from the few times I've glutened myself over the last 8 months. I had a pretty serious reaction to a supposedly gluten-free beer (it was gluten-free to 3 parts per million). It hit really fast... I didn't even finish half of the bottle before i realized what I'd done.  was it the barley? was it because it was liquid? Who knows.....

 

Over the last 2 months I have been repeatedly, accidentally, glutening myself every other week with some store bought fries (wheat starch) that i thought I'd checked the label on. I wasn't having immediate reactions, in fact it was worse the next day, but i've been steadily getting sicker and sicker. It was very slow in growing which is why it took 2 months to figure out.

 

I have no idea why the reactions were so different... hopefully I won't have the opportunity to cmpare to more glutenings in the future.  LOL

flowerqueen Community Regular

I must be very sensitive as I notice even a small amount if gluten almost straight away, and the effects last for ages before I feel better.

cavernio Enthusiast

The reaction in regular soy sauce would probably have been from barley hordein, whereas triscuits would  be regular gluten.

 

But there's a lot of stories on here about people who accidentally or purposefully eat whole servings of gluten and seem to feel fine, while tiny amounts on some unknown thing make them feel sick for days. One theory of mine is that an immediate sick feeling from  eating gluten might not be the gluten itself, but rather your leaky gut flaring up, allowing something else into your bloodstream that makes you feel so sick.

This wouldn't hold true for non-celiac gluten intolerant people though, since they don't experience leaky guts like celiacs. (Maybe in other ways they have leaky guts, like in CFS, but not the 'I eat gluten and therefore my intestinal cells will spread out and leave giant gaps'). There's a lot we don't know about celiac disease and gluten intolerance. There's a medical reason these discrepancies, I'm sure.

 

I don't have any of my own stories about this though. I've finally figured out that I get nerve pain from gluten, but it might not be immediate. I suppose I got a rash once from what I think much have been gluten on nuts. I've never knowingly eaten anything that should contain gluten though, not since eating it daily for the intestinal test where, again, immediate symptoms weren't apparent at all.

pretty in paleo Apprentice

Yes I seem to get different symptoms every time and sometimes nothing at all. I found out early on that rye doesn't affect me (on the surface) but avoid it anyway since I'm 99% sure I have celiac. Barley makes me feel pretty gross though.

It seems that I have a pretty consistant reaction to gluten overall, but it's always amazed me how much the severity can vary. Have you ever noticed that the form that gluten changes the way you react? Even if they are both essentially flour?

 

For example, there have been times when I've ingested what I know was a very tiny amount of gluten yet reacted very severely-- like when a friend served soup several years ago and included a teaspoon of flour, or when I had sushi with a tiny amount of sauce that contained a tiny amount of soy sauce.

 

Yet there are other times when I've had what would seem to be larger amounts of gluten, and haven't reacted to them almost at all-- like last year, when in a moment of weakness I ordered a breakfast sandwich, took two bites and immediately came to my senses and threw it away.  

 

It kind of seems like when it's in liquid it is way worse. But maybe I am just looking for patterns here. 

 

Curious to know if anyone else has noticed different types of reactions?

Psyche Newbie

I do notice different types of reactions. The more sugar (glucose, fructose, sucrose, etcetera) with it the quicker I react. Also in liquid form I have a faster absorbtion time. I get rashes if it is in anything I put on my skin - the itchies hit really fast with that.
 

In the past, I have kept journals with what I consumed/used and my reactions. That helped to isolate reactions and track patterns.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748

    Stephanie94
    Newest Member
    Stephanie94
    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

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.