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

By hopeful
in Coping with Celiac Disease

Recommended Posts

hopeful Newbie
hopeful
Posted

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
lbsteenwyk
Posted

Have you considered other unrelated GI disorders?

Gallbladder/Gallstones?

Diverticulitis?

Pancreatitis?

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

hopeful Newbie
hopeful
Posted
  • Author

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
MySuicidalTurtle
Posted

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

celiac3270 Collaborator
celiac3270
Posted

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
red345
Posted

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

mela14 Enthusiast
mela14
Posted

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
jknnej
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.