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

Lectin May Be My Problem, Not Gluten


hopeful

Recommended Posts

hopeful Newbie

Hi everyone,

I'm new and frustrated by my stomach problems, which I've had since I was a child (I'm now 40). Yet even as my diarhea and pain have gotten progressively worse, I remain hopeful. After all, if you give up hope, the battle is lost. I will always do everything I can to fight this disease, even if I end up losing.

While I haven't been diagnosed with celiac disease, I have all of the symptoms. I started the specific carbohydrate diet 10 months ago and have been very strict with it. This diet is stricter than gluten-free. But I've been able to follow it very closely because I'm afraid that if I cheat, I'll have lots of pain, even if I eat gluten-free.

After about 9 months of relief, last week, I had diarhea. Ever since, I've had intense bloating and gas. It's interupted my sleep considerably. For the life of me, I can't figure it out.

Then I read about Lectin. It's a new theory. The way I understand it, Lectin is a broader classification for glutens that is found in many foods including wheat. The major food groups containing Lectin are grains, rice, buckwheat, oats, rye, barley, millet, corn, dried beans, soy, peanuts, dairy and eggs.

See the following link for more info.: www.krispin.com/lectin

Interestingly, this link made me realize that people who have a lectin intolerance are not allergic to lectin. Rather, the intolerance creates toxicity which attacks the immune system, first in the gut, then elsewhere in the body, developing all types of allergies and other problems (food allergies, respiratory allergies, headaches, joint pain, etc.). The sinister thing about this is that what's causing the food allergies is not the food you're allergic to. It's the Lectin, which includes wheat gluten.

The way I understand it, an official diagnosis of celiac disease is made by examining the small intestine before and after you eat wheat gluten. So, if Lectin is your problem, technically, you may be a celiac, but a gluten-free diet may not work. It apparently works for some people. But certainly not me. I've been very good for 9 months now and now I'm having major problems again.

I'm beginning to wonder if the specific carbohydrate diet's recommendations of dry curd cottage cheese and eggs are problematic. Since breakfast two days ago, I have had nothing but water, dry curd cottage cheese, and plain chicken broiled in olive oil. My breakfast two days ago was three eggs scrambled in olive oil and three pieces of bacon. And I'm still painfully full of gas this morning. Any thoughts?


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



Celiac.com Sponsor (A8-M):



lbsteenwyk Explorer

Have you considered other unrelated GI disorders?

Gallbladder/Gallstones?

Diverticulitis?

Pancreatitis?

You may want to see your doc for some blood work.

hopeful Newbie

I'm seeing my gastro doctor next Wednesday. He did bloodwork and a colonoscopy last June and everything looked fine. He said I probably had celiac disease. Because my diet was already gluten-free, he didn't see the need to do the celiac disease testing, which was fine with me. Based on my examination, bloodwork and colonoscopy, I assume that he ruled out these other things. But I'll ask him next week. Thanks for the input.

MySuicidalTurtle Enthusiast

I hope you find out what is wrong. Good luck!

celiac3270 Collaborator

Yes, good luck, but if you've been tested positive for celiac, don't give up on the gluten-free just cause you might have other problems. I've been strictly gluten-free for 10 months also and I'm still sick.

red345 Apprentice

Good work, hopeful, very good. You're definitely moving in the right direction.

mela14 Enthusiast

I seem to be intolerant to all those things that you mentioned too!!!...with the excerption of corn.

keep us posted as to what the dr says.

mel


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



Celiac.com Sponsor (A8-M):



jknnej Collaborator

Could you try going off the Lectin products and see what happens? I hope you find an answer and remember-we're all right there with you!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748

    lamps
    Newest Member
    lamps
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.