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
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • 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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.