How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

[Bebygirl01]

On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below?

NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn.

Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to:

Wheat -Alpha Gliadin Gluten- 69%

Rye - Secalinin gluten-30-50%

Oats-Avenin gluten -16%

Barley-Hordein Gluten -46-52%

Millet-Panicin Gluten-40%

Corn-Zien Gluten -55%

Rice-Orzenin Gluten-5%

Sorghum-Kafirin gluten-52% and

Teff-Penniseiten Gluten 11%.

[trents]

@Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names.

Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.

[Bebygirl01]

Ortiz-Sánchez JP, Cabrera-Chávez F, de la Barca AM. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients. Nutrients. 2013 Oct 21;5(10):4174-83. doi: 10.3390/nu5104174. PMID: 24152750; PMCID: PMC3820067.

AND SEE:

Oats Intolerance in Celiac Disease. PLoS Med. 2004 Oct;1(1):e23. doi: 10.1371/journal.pmed.0010023. Epub 2004 Oct 19. PMCID: PMC523841.

AND ALSO SEE:

Bascuñán KA, Orosteguí C, Rodríguez JM, Roncoroni L, Doneda L, Elli L, Araya M. Heavy Metal and Rice in Gluten-Free Diets: Are They a Risk? Nutrients. 2023 Jun 30;15(13):2975. doi: 10.3390/nu15132975. PMID: 37447301; PMCID: PMC10346754.

Celiac disease is one of the most common autoimmune gastrointestinal diseases; over the last decades, its prevalence indicates a mean annual increase in frequency currently calculated at 7.5% per year [23]. celiac disease is triggered by gluten present in the diet and the disease involves autoimmune and inflammatory damage to the small intestine in genetically susceptible individuals. To develop celiac disease a person must inherit the genetic predisposition; however, about one third of the population carries the risk genes and only ~1% of the population develops the disease, indicating that genetics is not sufficient to explain the condition. The environment participates by providing the triggering factor, i.e., gluten, and the disease is activated by environmental factors which, until now, have not been fully understood, among which changes in eating habits and the intestinal microbiota are considered to be significant factors [24,25]; yet, current knowledge is insufficient to explain the mechanisms involved. Currently, the only treatment for celiac disease is a GFD for life.

AND ALSO SEE:

Dr. Osborne: Although rice is considered gluten-free based on the definition set forth by the FDA, rice does contain a different form of gluten prolamin called orzenin. In my experience, those with known celiac disease or non celiac gluten sensitivity issues do better when avoiding rice.

[trents]

Key word, "gluten-like". 

By the way, have you looked up Dr. Osborne's credentials and his background? He is a licensed nutritionist but his scientific? medical? clinical background is that of a chiropractor. He is not taken seriously by many experts in the medical and scientific community.

If it is helpful to you to see these other cereal grain proteins as "gluten", I'm fine with that. The problem is, when you begin to promote that line of thinking to others, people get confused about what grains they actually need to avoid. About 10% of celiacs react to oat protein (avenin) like they do gluten (the protein in wheat/barley/rye). That is not news. But the vast majority of celiacs have no issue with these other cereal grains. If we start throwing around the term "gluten" to loosely embrace the proteins found in all cereal grains it's going to be very confusing to those just getting started who only need to avoid wheat/barley/rye. And it will also create a great deal of confusion in the restaurant industry trying to cater to that element of their customer base needing to eat gluten free.

[Bebygirl01]

Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing.

I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.

[trents]

The NIH article you link actually supports what I have been trying to explain to you:

"Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet."

Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community. 

Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction.

You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion. 

You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease.

If you are intent on teaching the truth, please get it straight first.

Edited February 21 by trents

[knitty kitty]

Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.  

Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. 

In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.  

In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.  

Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.  

Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.  

Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery.

I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.  

But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.  

Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.  

https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/

[trents]

Thanks for the information, knitty kitty. It helps bring some clarity and reduces the confusion that misinformation such as is contained in this thread title introduces into the community. People new to the celiac experience are already struggling to wrap their minds around not being able to eat just wheat, barley and rye any longer. We don't need to unnecessarily add to the list on "no no" foods. And I saw where you added this same post to the thread on oats as well.

[Itsabit]

  On 2/21/2025 at 6:51 AM, trents said:

@Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names.

Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.

Expand Quote  

Thank you for clarifying! Something to possibly consider as I continue on my “non-gluten” quest and if I do not improve, but being new to this whole realm and already overwhelmed and stressed, this would have pushed me over the edge right now. 🥹

[Liquid lunch]

  On 2/21/2025 at 10:51 PM, trents said:

Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion. 

Expand Quote  

Hi Trents, there’s a test centre here that tests for igg and ige antibodies, would neither of these pick up celiac disease?

I haven’t had the test because I didn’t know about it until I’d already been along the elimination diet route and it’s pretty obvious if I eat the wrong thing because I swell up like a balloon and my guts bleed.

Possibly another author you might not agree with but dr gundry suggests that lectins trigger autoimmune disease and recommends the igg and ige antibody test to see which you are reacting to, my arthritis went away when I stopped eating them, my sisters fibromyalgia also miraculously disappeared.

Celiac disease being an autoimmune problem I’m surprised that testing for reactions to all lectins isn’t common practice, it’s not just grains, there’s lectins in soya, chilli, cucumber, tomatoes, aubergine, melon, potato, banana, beans and almost all seeds.. I could go on and on, it’s easier to list low lectin food than high.

If the idea of giving up lectins is freaking people out it really shouldn’t, dr gundry has a useful list of low lectin ingredients, it’s really easy, you just only eat things from that list.

It’s been life changing for me figuring this out, with lectin avoidance, reishi and cordyceps I’m able to function pretty well.

[trents]

Yes, lectins can be problematic for some people. 

IGG testing can be used to detect celiac disease but not IGE. IGE antibodies have to do with allergic reactions and ceilaic disease is not an allergy, it is an autoimmune reaction. The IGG tests are not as reliable for detecting celiac disease as are the IGA tests but they can be be very helpful, particularly in the case where someone has IGA deficiency or has been practicing a reduced gluten diet. Elevated IGG tests are more likely to have other causes besides celiac disease than are the IGA tests.

You might find this helpful: 

 

[Liquid lunch]

Thanks, sorry for all the questions but in the above link..

’Remember, nearly all tests and screening for celiac disease require the patient to be eating a gluten-containing diet before testing’

I guess this also applies to other lectins so you would need to be eating them in order to find out via igg/ige testing which ones you’re reacting to? It says ‘nearly all tests’, is there one that will identify problematic lectins if you’re not eating them?

[knitty kitty]

@Liquid lunch,

I prefer the AutoImmune Protocol Diet, developed by a Celiac, Dr. Sarah Ballantyne.  

I would be interested on your point of view about the AIP diet compared to the Lectin Free diet.  

Here's some research on both....

Dietary Lectin exclusion: The next big food trend?

https://pmc.ncbi.nlm.nih.gov/articles/PMC6603809/

 

Autoimmune protocol diet: A personalized elimination diet for patients with autoimmune diseases

https://pmc.ncbi.nlm.nih.gov/articles/PMC11755016/

An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease

https://pmc.ncbi.nlm.nih.gov/articles/PMC6892563/#:~:text=The AIP dietary intervention consisted,week maintenance phase%2C during which

Effects of Autoimmune Protocol (AIP) diet on changes in thyroid parameters in Hashimoto's disease

https://pubmed.ncbi.nlm.nih.gov/37772528/

[Liquid lunch]

@knitty kitty maybe I’m a little out of touch with fashion having been pretty much bed ridden for so long but this seems ridiculous to me..

‘As a result of their potential for toxicity and their “anti-nutritional effects” it is almost inevitable that lectin exclusion could well become a big food fad‘

I just can’t imagine anyone avoiding lectins if they didn’t have to.

When I first looked at the gundry avoid list I couldn’t understand why so many things were on it that are not high lectin (fruit ect.) and assumed high sugar items must’ve been added because people use the diet for weight loss so I tried eating them and got sick. He’s recently added honey and maple syrup to the approved list by popular demand but I can’t eat them.

For me it seems to be almost all lectins, sugar, and possibly tannins because I can’t have tea and not sure what else could be causing the nausea.

I’ve had some luck with pressure cooked mashed potato but pressure cooking white rice as gundry recommends didn’t help.

The aip diet doesn’t match the foods I can tolerate as well as the gundry list and it seems to be mostly the high sugar things, also some of the aip avoid foods I’m fine with, hazelnut, pistachio.

Yogurt and butter is on the aip avoid and again my guts agree with gundry on this, cheese yogurt and butter fine, milk not so much.

Now it’s possible to get an igg test it seems an unnecessarily painful and slow process to attempt aip or total lectin avoidance and reintroduction, I wish I’d known about these tests before, it’d have saved me a lot of bother.

 

[knitty kitty]

Since lectins occur in almost everything, it's pretty unrealistic to avoid them all.  I didn't understand the rationale behind Dr. Gundry's lists either.

Many fruits either contain high histamine amounts or are histamine releasers.  Histamine is made by our body, but we can also consume it in foods, because plants and animals make histamine, too.  Histamine is a neurotransmitter, that results in alertness.  That cup of coffee in the morning?  Releases histamine, so we wake up more.  But histamine is released as part of the immune response in Celiac and other illnesses, causing inflammation.  

Our body can clear histamine, but if the body can't keep up with the histamine we are making ourselves as well as the histamine we're eating, we can have serious problems, digestive problems, insomnia, depression. 

Some fruits can have high levels of fructose, one kind of sugar in fruits.  Some intestinal bacteria can ferment fructose, resulting in gas, bloating, diarrhea.  So, yes, Fructose Malabsorption can occur in Celiac.  

Your dont list...Honey, maple syrup, lectins (and their attached carbohydrates), sugar... ....bedridden...These are all carbohydrates, sugars. 

We need Thiamine to turn carbohydrates into energy.  Without sufficient thiamine, we can develop Gastrointestinal BeriBeri which has the classic digestive symptoms, nausea, diarrhea, abdominal pain.

Tannins in tea and coffee cleave thiamine in two, making it nonfunctional.  

Your do list...hazelnuts, pistachios, pressure cooked potatoes, and yogurt, butter, cheese....

These are foods that contain thiamine.  Pressure cooked mashed potatoes have more thiamine than boiled potatoes.  Those nuts are high in thiamine.  Dairy products are a good source of thiamine.  

I can't diagnose, I'm not a doctor.  You read these articles and let me know if anything rings a bell with you.  Yes, I see thiamine deficiency everywhere because it is unrecognized by doctors.  I recognize it because I had it.

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Refeeding Syndrome

https://www.ncbi.nlm.nih.gov/books/NBK564513/

Refeeding Syndrome (a different article...)

https://pubmed.ncbi.nlm.nih.gov/33232094/

[Liquid lunch]

Thanks kitty, I needed reminding about thiamine. I ran out of magnesium so stopped taking it and that was ages ago, it definitely helps with my energy levels and general function. I just took some now and I’ll get some more magnesium.

Although I don’t really understand the gundry list it does seem to correlate with foods I can/cannot eat, lectins are not all made equal and it seems to be personal which we react to but some are generally more problematic than others, I think he’s based the list on avoiding lectins that people are often reacting to on an igg test.

I think it’s fructose I’m reacting to in fruit rather than histamine because I’m fine with coffee, not sure of the quantity of tannins but for me green tea is worse than black and coffee is fine.

Interesting about wet beriberi as I nearly died from pneumonia when young so I wonder if it was related.

I react differently to the different foods, lectins cause bloating bleeding and severe pain, sugar I feel wiped out but don’t get the bleeding, tea it’s just nausea.

I’ve wondered about lectins being sugar binding proteins and my intolerance of sugars but the bleeding does seem to be a specific response to lectin consumption which I think is an autoimmune response because it improves when I take immune modulating mushrooms (reishi and cordyceps).

I really do appreciate you being here to help whenever  I log in, than you 🙏

[knitty kitty]

@Liquid lunch, so glad you're going to continue with the thiamine! 

Good to keep in mind that tannins in tea and coffee can break thiamine in two, rendering it useless.  Caffeine can destroy thiamine, too.  Take your thiamine separately from these drinks, by an hour or so.  Green tea (not macha, though) only has about thirty percent of caffeine as black tea, but Oolong tea can act as a laxative, so be aware. 

Yes, physical illnesses like pneumonia can precipitate a thiamine deficiency.  We need more thiamine when we're physically ill, mentally stressed or physically active especially in hot weather.  Studies showed that patients with Covid who had higher thiamine and Vitamin D levels had better outcomes.  Vitamin C is important, too.  

Thiamine is needed to keep mast cells from releasing histamine.  Without sufficient thiamine, mast cells get really touchy trigger fingers and degranulate at the slightest provocation.  I'm hoping your reactions to lectins will become lessened as your mast cells get control of their degranulation.  

Tryptophan, a form of niacin, is very helpful in healing the intestines and making the feel good neurotransmitter Serotonin.  Yes, neurotransmitter formation starts in the digestive system!   My tummy feels so much better after upsets if I take tryptophan for a while.  

So happy to help you on your journey!  

[Bebygirl01]

  On 3/14/2025 at 8:59 PM, Itsabit said:

Thank you for clarifying! Something to possibly consider as I continue on my “non-gluten” quest and if I do not improve, but being new to this whole realm and already overwhelmed and stressed, this would have pushed me over the edge right now. 🥹

Expand Quote  

 

[Bebygirl01]

I have this issue with all glutens, including the gluten found in corn and have gotten immensely better thanks for not just Dr. Osbourne, but also Dr. Hyman, and Dr. Susan Payrovi- an MD with Stanford.

Gluten is the protein found in all grains. 

[knitty kitty]

At minute 28 and again at minute 45, the man explains that the carbohydrate storage protein In CORN is ZEIN.  

Zein has segments of the 33-mer polypeptide, alpha gliadin, found in wheat, barley, and rye, which if presented to DQ HLA genes triggers an autoimmune reaction in those with Celiac Disease.  Casein in dairy for the same reason can similarly can trigger an autoimmune reaction in those with Celiac Disease, but casein in dairy is not gluten.

Some people who have difficulty with corn do not have Celiac Disease and are not mounting an autoimmune response to Zein presented to DQ HLA genes activated by Celiac. 

To label corn as having gluten is simply going to confuse people with and without Celiac Disease.  

Edited March 18 by knitty kitty
Typo correction

[trents]

From: https://en.wikipedia.org/wiki/Gluten

"Gluten is a structural protein naturally found in certain cereal grains. The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily, that forms readily with the addition of water and often kneading in the case of bread dough. The types of grains that contain gluten include all species of wheat (common wheat, durum, spelt, khorasan, emmer and einkorn), and barley, rye, and some cultivars of oat; moreover, cross hybrids of any of these cereal grains also contain gluten, e.g. triticale. Gluten makes up 75–85% of the total protein in bread wheat.

Wheat gluten is composed of mainly two types of proteins: the glutenins and the gliadins, which in turn can be divided into high molecular and low molecular glutenins and α/β, γ and Ω gliadins. Its homologous seed storage proteins, in barley, are referred to as hordeins, in rye, secalins, and in oats, avenins. These protein classes are collectively referred to as "gluten". The storage proteins in other grains, such as maize (zeins) and rice (rice protein), are sometimes called gluten, but they do not cause harmful effects in people with celiac disease." (Ephasis mine)

The storage protein in corn is a gluten-like protein but is not gluten. Informally, it is sometimes referred to as corn gluten.

From time to time we get celiac contributors to this forum who discover some food that, in addition to gluten, triggers their celiac disease or dermatitis herpetiformis. When they eliminate that food they experience profound improvement in their health and are convinced it must be the magic bullet for all celiacs. And this gets reinforced when they read or listen to material that correlates with their experience but has dubious scientific credibility. 

[Liquid lunch]

  On 3/18/2025 at 6:12 PM, trents said:

we get celiac contributors to this forum who discover some food that, in addition to gluten, triggers their celiac disease or dermatitis herpetiformis. When they eliminate that food they experience profound improvement in their health

Expand Quote  

I wonder if refractory celiac is just people reacting to other lectins they’ve not yet identified.

If I was rich I’d spend all the money on igg tests and give them out freely to people when they sign up to this site, I’d never heard anything about other lectins until kitty pointed them out, probably lots of people in the same boat as me.

My theory is that it was 1940s colchicine induced mutations in wheat oats peas and soya that increased the lectin content and caused the increase we see with intolerance, once you react to one lectin your immune system gets a bit suspicious of all the others.