Liquid lunch

Reishi and cordyceps are immune modulators, they stop you reacting so much/producing antibodies to lectins.
Uptake is better when taken as a tincture, you can buy it pre made as a tincture, usually vodka based, or make your own which is much cheaper.
You can find instructions online, basically powdered mushrooms soaked in strong alcohol for a month, shaking regularly. Then the strained mushrooms are heated gently in water for 8 hours, strained again and the water then combined with the first alcohol extract. Some of the properties are water soluble, others require alcohol for extraction.
It’s also prescribed for fatigue which is a side effect I’m happy to put up with.

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.
 

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.
 

@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!  

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?

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,
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/

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: 
 

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/

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.

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.

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%.

I had these for years, covered in scars from them. Not had any since I started taking reishi and cordyceps tincture, they’re immune modulators, I think that’s how they work.
Most of my other symptoms have also disappeared, I take a treble dose if I get glutened and it’s almost an instant fix, 3 days of mild symptoms instead of 3 weeks of horrible.
Might be worth a try, don’t be put off by the caterpillars, I think they’ve found a different way of growing them now. 

I don’t think it matters much if you trust the supplier, I get them from a Welsh company maesyffin mushrooms but I think the guy there has retired from growing now and just resells eu imports so it’s probably the same mushrooms he uses to make the tinctures as the company you posted.
It’d probably be cheaper to buy dried and make your own tincture. 

☺️ Thanks!!

@B1rdL0ver I do the same with things of interest, my brain isn’t great these days.
Hope you feel better soon, if you’re worried about essential oils being oily then don’t, they are technically oils but very thin and will help dry your skin.

Thank you so much @Liquid lunch!! Are you okay if I screenshot your reply so I don't loose it? Or in case I forget? 

🤣 That is cute.
Thanks for the directions, I'll look into it!

@B1rdL0ver easiest way would be to buy blanched almonds that will already have had the skins removed or you could blanch your own, just dip them in boiling water for about 10 seconds, then run under a old tap to cool and remove the skins.
When blanched and peeled just soak them in water overnight in the fridge and then put them in the blender, much cheaper than pre made almond milk which is mostly water and may be lower in lectins depending on how they process the pre made stuff.
If you ever feel brave enough to try kefir you could just order pre made stuff online or it’s really easy to make your own, lots of videos on you tube. Worth adding coconut milk just before drinking. It’s just like yoghurt but medicinal grade, it’ll heal your guts.
I’ve heard lots of good things about chicken broth too but I keep them as pets. They all have names, I just couldn’t. I was a chef for 25 years though so here’s how to make it..
mirepoix veg (roughly chopped carrots onions leeks celery and parsley stalks)
chicken carcass
Very gently simmer in a big pot and occasionally skim the top with a ladle/spoon for 6 hours and then cool and decant into ice cube trays. Freeze for later use.

@B1rdL0ver almonds are high in lectins but it’s in the skin so you could boil and peel some to make your own low lectin milk.
I thought I’d been glutening myself with all sorts of things, assumed it was cross contamination with wheat but it turned out to be lectins. There’s various ways to reduce them, peeling, deseeding, high temperatures (pressure cooking), soaking in distilled water. The most effective is fermentation.
The probiotics in kefir consume all the inflammatory bits in milk and help to maintain normal permeability of the gut wall. I’d be willing to bet money it’d help, looser donates £/$10 to the website?

Thanks for the advice @Liquid lunch!!!
I will look into the essential oils but right now I'm hopefully on the path to recovery with my acne. I was prescribed Doxycycline on March 12th, which I was gone all day because we live 1hr and 30 mins from my Dermatologist, he said Doxycycline had little to no side effects and was a step down from Minocycline and I've experienced no issues with it so far (I may need to wait longer since I've been on it for 2 days so far). I'm also on Clindamycin gel and Tretinoin gel to dry my face up from how oily it is.  
I will see about the b Multi Vitamins and magnesium. My mom has magnesium pills for her, but it's the wrong dosage and it's too strong for me, as I'm still quite young. 
About the milk, I only drink Almond milk, the 2% stuff makes my stomach upset and I get really gassy and bloated from it, at this point I'm scared to drink any other milks. 

Hi @B1rdL0ver, I’ve been on a steep learning curve with my issues and found a few things that might help with yours.
Skin problems -  I use neat cardamom essential oil, clove also works or a blend of the two which smells good. The relief is pretty much immediate, some people advise caution using neat essential oil on skin but I’ve never had a problem with it and find it’s more effective than when diluted with a carrier oil. You do have to be sure it’s proper essential oil from a reputable supplier though as synthetic ones are dangerous.
Nausea, feeling rubbish, and digestive problems- homemade kefir is amazing, like yogurt but LOADS more probiotics included. If you mix it with coconut milk just before drinking it keeps it alive in there longer and tastes good.
Brain fog- as kitty mentioned already b1 is amazing, I take it with a b multivitamin and magnesium which is apparently necessary. Ignore the dose on the bottle and ask knitty kitty for more details, she’s amazing.
Inflammatory foods not containing gluten are also off my shopping list, the corn you mentioned has a lot of lectins, as do most seeds, beans (coffee/soya ect.), cucumbers, brown rice, peanut butter,  tomatoes, potatoes, chillies, pulses, I’m experimenting with fermentation to reduce them.
A2 raw pasture fed milk is worth getting if you can.
It’s been a long slow and painful process figuring these out so hopefully it’ll save you the bother if any of them help.

Hi @B1rdL0ver, I’ve been on a steep learning curve with my issues and found a few things that might help with yours.
Skin problems -  I use neat cardamom essential oil, clove also works or a blend of the two which smells good. The relief is pretty much immediate, some people advise caution using neat essential oil on skin but I’ve never had a problem with it and find it’s more effective than when diluted with a carrier oil. You do have to be sure it’s proper essential oil from a reputable supplier though as synthetic ones are dangerous.
Nausea, feeling rubbish, and digestive problems- homemade kefir is amazing, like yogurt but LOADS more probiotics included. If you mix it with coconut milk just before drinking it keeps it alive in there longer and tastes good.
Brain fog- as kitty mentioned already b1 is amazing, I take it with a b multivitamin and magnesium which is apparently necessary. Ignore the dose on the bottle and ask knitty kitty for more details, she’s amazing.
Inflammatory foods not containing gluten are also off my shopping list, the corn you mentioned has a lot of lectins, as do most seeds, beans (coffee/soya ect.), cucumbers, brown rice, peanut butter,  tomatoes, potatoes, chillies, pulses, I’m experimenting with fermentation to reduce them.
A2 raw pasture fed milk is worth getting if you can.
It’s been a long slow and painful process figuring these out so hopefully it’ll save you the bother if any of them help.

@Liquid lunch,
Remember to stay away from cruciferous vegetables, for a while, too!!!  😺

@knitty kittyOoh that makes sense. I’m going to need to wait a while before any more experimenting though, collapsed in a heap with ballon belly.
Cucumbers are now getting peeled and de seeded so hopefully that’ll help and Tempeh is next on the list of things to test which might be a good alternative.
I’m a bit frightened to try pumpkin seeds again at the moment but hopefully I’ll get brave and try with distilled water when I’m feeling better.
Thanks for the link
eta.. oh no! ‘The raw soybean seed was found to contain the highest levels of lectins’