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Lectin May Be My Problem, Not Gluten

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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?

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Celiac.com Sponsor (A8):

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Have you considered other unrelated GI disorders?

Gallbladder/Gallstones?

Diverticulitis?

Pancreatitis?

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

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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.

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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.

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