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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    2. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      9

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
    • trents
      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
×
×
  • 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.