Hello.

Long time lurker, pre and current. Thought you all would find this interesting. For those without the 2 main genes, negative testing or low-end Enterolab numbers (i.e., Fecal Antitissue Transglutaminase IgA 11 Units [Normal Range <10 Units]), perhaps the problem isn't gluten, afterall. Are the un-DQ2/DQ8ers actually allergic to various lectins? Maybe the reactions to these sneaky little proteins tends more towards neurological and/or psychological symptomology?


Philipena

THE LECTIN REPORT

http://www.krispin.com/lectin.html

Historically diagnosis and treatment of Celiac-Sprue related to 'gliadin' (also known as gluten) sensitivity. Gliadin is found in wheat, rye, barley, oats, and foods containing these grains (including beer, grain based alcohols, mayonnaise, grain vinegar, etc). Some Celiacs did not respond to elimination of gluten/gliadin. In 1951 Drs. Sidney V. and Merrill P. Haas published Management of Celiac Disease documenting treatment and cure of celiac and cystic fibrosis of the pancreas with a carbohydrate limiting diet introduced as the 'Specific Carbohydrate Diet'. More information about this diet can be gotten from Breaking the Vicious Cycle E Gottschall, BA, MSc. Kirkton Press Ltd. Baltimore, Ontario, Canada 1998.

In many cases cited in the book, elimination of certain carbohydrates 'cured' diagnosed Celiacs after one year and they were able to return to eating gluten containing foods. In hindsight many of the foods eliminated in this plan are high lectin foods known to be associated with gut and systemic inflammatory reactions. Celiac-Sprue is a genetic disorder treated by elimination of offending foods. The response of some to the specific carbohydrate elimination diet would mean that the patients who responded did not have classical gluten intolerance, Celiac-Sprue, which requires life long elimination of gluten/gliadin. It suggests that other lectins may cause similar symptoms and overlapping diagnostic and treatment difficulties.

If all cases of lectin intolerance were genetically based reversal of intolerance would not be possible. There must therefore be a subgroup of IBS, Crohn's, Celiac, colitis that is related to sensitization to food lectins that can be reversed by avoidance of these lectins and a restoration of gut function including SIgA and other immune protectors. Bacteria, virus, or other conditions, drugs or injurious substances acting directly on the gut wall may cause sensitization.

Tests are available to determine SIgA levels, and gut immune reactions to soy, dairy, wheat and egg. These tests do not cover the entire family of lectins, nor would blood or skin tests necessarily show sub-clinical sensitivity reactions. Most of the conditions associated with sub-clinical lectin intolerance appear to be degenerative, often taking extended periods of time to appear and longer to reach life threatening or painful (such as arthritis) stages. Many lectin related conditions may be considered to be 'autoimmune'.

Hi Call.

That was an interesting read. I'm glad you posted it. If you were following our journey at BT1, you probably already know that several of us did some research on lectins but never reallly came up with all that much.

Dieticians and nutritionists are not much help. The last one I went to see, I gave her a quick course on bean lectins and food poisoning... and she was just out of school where I thought they'd've taught her better... sigh

I'm especially interesting in the lectin differences of different foods because I have long since wondered if that isn't part of my son's problem.

The thing is, we did SCD and still maintain it, to a degree but it definitely did not cure him or my husband who seems to be the one the symptoms are inherited from.

Now my 2nd son also, very obviously has many food intolerances and I have cut back my diet even further with him (nursing). Getting rid of all dairy got rid of all diaper rash but did not get rid of the little pimples on his face and arms. I've just taken eggs out of my diet (really hoping that eggs are not the cause of it) because someone recently told me that they got rid of their little bumps when they stopped eating eggs.

Any other info. on lectins would be really fabulous.

When BT1 comes back on line, I will try to remember to post links to the information that we collected there.

I've often thought I have difficulty with lectins. But I'm mostly paleo now and lectins aren't allowed. They're in wheat too, so I couldn't eat wheat anyway.

This is a pretty extensive listing, though a bit too scientific for me...

http://www.dadamo.com/wiki/wiki.pl/Lectins

FABULOUS!!

That is the most awesome compilation of lectin information I've ever seen! (And I've seen quite a lot.) - and I've only read the 3 sections based around food and allergy/infection.

Very, very interesting It will be very good to keep my eye out for other things that either agree or disagree with that article.

Thank you, thank you... This will probably keep my tea times interesting for the next week!

Here's a definition that helps in reading the 'Microbes' section:

http://www.answers.com/topic/agglutination
ag·glu·ti·na·tion (ə-glūt'n-ā'shən) pronunciation
n.

1. The act or process of agglutinating; adhesion of distinct parts.
2. A clumped mass of material formed by agglutination. Also called agglutinate.
3. Physiology. The clumping together of red blood cells or bacteria, usually in response to a particular antibody.
4. Adhesion of wound surfaces in healing.

The noun agglutinating activity has one meaning:

Meaning #1: the coalescing of small particles that are suspended in solution; these larger masses are then (usually) precipitated
Synonym: agglutination

From the article:

A first read of this doesn't make sense to me. The Specific Carbohydrate Diet is mentioned, but the carbohydrates that are restricted in this diet are for a different reason other than lectins. SCD allows fermented dairy and nuts, but those both have lectins. I tried SCD this summer, and while I think it can work for some people, I don't think it worked for me because I found out I have a sensitivity to almonds, one of the main foods on SCD. I also can't have dairy. So that left a VERY limited diet for me, and I was hungry all the time and losing weight. It did not get rid of my digestive problems. Cutting out the foods I was reacting to did. I'd like to see more research as it could be a possible theory for food intolerances. The research papers quoted on the website didn't offer any insights for me.

Can someone please explain to me what SIgA levels tell you? My doctor ordered SIgA for a stool sample that I recently submitted for pathogens, and I'm not sure what it's going to tell him.

Claire

I don't know about SIgA levels and lectins... but I can tell you that the lectins found in different foods are different lectins. Almost all food has lectins. The trick is, trying to establish the difference between the lectins.

I thought the same as you at first, Claire... it's not a lectin reduced diet... Haas promoted the use of bananas and banana flour and carrots, etc.. However, I think they didn't specify the TYPE of lectin that is reduced in that diet. That diet is reduced in 'seed' lectins.

This is what I've come up with so far... It is reduced in anything that is a seed: grain, potato, beans (the original diet, I believe, did not allow beans back in at all... contrary to beans starting to be allowed now - according to pecanbread.com). My son's reactions backed up all this stuff. We'd try to add one of these foods back in and he'd react to all this 'high seed lectin' foods.

We couldn't feed him things from the lily family or the nightshade family. If you think about it... it's all seeds. Garlic, onion, eggplant, tomato.... Finally when I started seeding and skinning (again as per SCD intro. diet) them (after a long period of gut healing) he could handle them again. It's taken 4 years for him to be able to tolerate the lily family again... and then only in bit proportions.

I think that perhaps the 'complex sugar' explanation of SCD is simplified for the general public. I'm quite sure it's much more complex than that. The more I read about lectins and the more I see my son's reactions, the more I understand that diet.

I do, however, question the claim that Haas or Gottschall ever said that celiac could be cured... but I have read that it is the original celiac diet... that grains were not supposed to ever be introduced back into the diet. I don't remember reading that celiacs could go back to eating a 'normal' diet.

As you can tell, I'm very excited! I've been sitting on these thoughts for a year with nothing to feed and develop them... or new ideas to build on and roll around.

Lovely!

I'm not quite getting how potatoes, onions and garlic are seeds? They're roots aren't they?

I have been reading a book about the science of food and how plants fight back against being eaten. This is much of the reason we have to cook certain foods. Plants have evolved some pretty elaborate defense systems to keep from being eaten. Then again, other plants seem to count on being eaten to spread (well... their fruit, like berries).

There's a warning in there about mushrooms. Some component of them that seems to be a problem and one should limit their intake of mushrooms. I'll have to reread that part of the book.

Lectins are what gives a plant the energy to begin development.

You're right that they're not technically thought of as seeds... but... tubers like that develop and multiply at their source (so to speak) What gives them the energy to split like that??? Maybe lectins, which may very well mean that they have the type of lectins that my son reacts to, right in the meat of their body.

It may also explain why he seems less sensitive to them... because the lectins are more 'spread out' in the bigger body... whereas grain lectins are really packed in and concentrated in those little seeds.

I have lots of reading to do to see if this is a possibility but I'm excited because I've never put that bit together before.

I'm very interested in foods and how to prep them to prevent illness... Back at BT1 I had lots of thread about plants, including some that defend themselves with toxins... like celery, etc. I would be very interested to hear anything that really strikes you as being 'cool' or generally unknown.

I think this would pertain to the early 1950s - it wasn't until 1951 that the Drs. Haas published their diet as a treatment and cure for celiac and cystic fibrosis of the pancreas. My interpretation of what is said here is that people who had been diagnosed with celilac were considered healed as a result of the inherent lectin restrictions of the then new SCDiet, which brings into question whether their original diagnoses were correct. Did they have celiac, or gluten intolerance, or were they in fact suffering from lectin intolerance? Again, this is what started me thinking that perhaps a certain percentage of diagnosed gluten intolerators (that is, not possesing either DQ2 or DQ8) are really lectin intolerators. If this is the case, the very stringently defined diagnosis of villous atrophy and the possession of celiac genes is actually accurate.

Of course, this now brings into question our concept of what we experience as exclusively being a gluten intolerance. Do all of the genes identified as linked to gluten intolerance (not DQ2 & 8) really mean these are actually markers for lectin intolerance? I've done a lot of searching and have yet to find that connection, possibly because it hasn't been made. Does anyone know if Fine has ever written about lectins? Could it be we're all missing a very important part of the puzzle?