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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need Help Going Lectin-Free
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Hi,

I've been extremely careful avoiding gluten, and have not had any processed or pre-packaged foods (with the help of another family member, so everything has been double-checked!). However, 5-6 weeks later, my symptoms (upper abdominal and rib fullness/pressure, breathlessness, frequent low-grade headaches) are still present. I've only been eating pure (ie. no sauces or anything) fruit, pure meat, pure vegetables, certified gluten-free grains (including no oats), and supplements I take say gluten-free (and confirmed as such by the pharmacist). I still drink milk, but as a precaution switched to lactose-free. After doing some research, I've now decided to do that diet-avoidance test with lectins. I've read various articles, including the one by Krispin, however the more articles I read, the more confused I get, as it sounds like virtually everything has lectin in it! I tried 'googling' good vs. bad lectins, but got no help from this. Some articles confuse the picture even further by also talking about eating for your blood type . . .

So, my question: what lectin-containing foods should be avoided for those going lectin-free??

Thanks in advance!!

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Hi,

I've been extremely careful avoiding gluten, and have not had any processed or pre-packaged foods (with the help of another family member, so everything has been double-checked!). However, 5-6 weeks later, my symptoms (upper abdominal and rib fullness/pressure, breathlessness, frequent low-grade headaches) are still present. I've only been eating pure (ie. no sauces or anything) fruit, pure meat, pure vegetables, certified gluten-free grains (including no oats), and supplements I take say gluten-free (and confirmed as such by the pharmacist). I still drink milk, but as a precaution switched to lactose-free. After doing some research, I've now decided to do that diet-avoidance test with lectins. I've read various articles, including the one by Krispin, however the more articles I read, the more confused I get, as it sounds like virtually everything has lectin in it! I tried 'googling' good vs. bad lectins, but got no help from this. Some articles confuse the picture even further by also talking about eating for your blood type . . .

So, my question: what lectin-containing foods should be avoided for those going lectin-free??

Thanks in advance!!

Well, I think it depends which ones you are intolerant of :D:P It is impossible to be totally lectin free as there are lectins in most everything. You just have to avoid the ones you are intolerant of, starting with those with the highest concentrations.

No, but seriously, from what I have read, it is seldom that one is intolerant to all lectin groups. From what I have determined the major groups are the gluten grains (but corn is included in the grains also), groundnuts (peanuts, soy), dairy, legumes, and nightshades. Now that eliminates a helluva lot of food from your diet. But wait a bit, it's not that bad. I eliminated gluten first, then found out about soy. I had been mostly corn free and now won't touch it. I gave up nightshades because I thought it would be good for my RA, but when I try to reintroduce them they really bother me, so they are definitely out although I can eat some fresh tomato, just not cooked. I had half of my husband's baked potato one night and itched all over (soy used to do that to me too). I had been subconsciously avoiding dried beans and peas and lentils, but then found out that fresh green peas bothered me, so all legumes are out. But I can now eat all the dairy I want :) having overcome my lactose intolerance. Some people are also bothered by rice, but not me, though I have switched from brown to white (I know, you're supposed to go the other way around, but nearly all the lectins in rice are apparently in the bran) so I want to still be able tolerate that.

So that leaves for me all meat, fish and seafood, all fruit, all the other vegetables, the squashes and brassicas, sweet potatoes, carrots, turnips, rutabagas, parsnips, lettuces. avocado, swiss chard, mushrooms, the gluten free whole grains like sorghum, amaranth, quinoa; and buckwheat and millet (some can have a problem with these) in addition to the starchy gluten free grains. I try to use as many of the whole grains as possible. I use almond butter instead of peanut, eat lots of nuts, lots of eggs. I do cheese and yogurt and now ice cream :D But I cannot do beets for some reason.

So what you have to do as I see it is to try to determine which lectin group(s) you are intolerant of (if that is your problem). I believe it may be mine but the jury is still out, as I still have some occasional surprise reactions when I should not. And I know when I have a lectin reaction because I bloat like crazy most often, my heart races and does many ectopic (early or late) beats, or pauses for two or three seconds. Sometimes these reactions are brief, but sometimes they continue for 2-3 hours and are most disconcerting.

I would be interested as to how you came to your conclusion that lectins were a problem for you, and which food group(s) you have reacted to. I would think you are very early in the gluten free diet to be make a true assessment of how it is going to work for you, but that is not to denigrate the possibility that lectins could be affecting you.

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Thanks for your reply, and for telling me how to find my posts if they've been moved :unsure: You are possibly correct that I haven't given the gluten-free diet long enough, but because I'm so sure of being gluten-free for the past 5 weeks and still get episodes of worsening symptoms when I haven't had gluten (and sick of feeling, well, sick), I wondered if I am perhaps (temporarily?) sensitive to some other food(s). With this lectin stuff, what I am thinking of trying is first eliminating night-shades, which will be fairly easy for me to do, since of that group I only eat potatoes, tomatoes, and a few of the related spices from this group (like pepper, chili powder and cayenne pepper). Then, if symptoms do not improve, then I will add another food from this group to eliminate. What do you think of this approach? With each food/food type I eliminate, how much time should I allow for the test period (that is, if I'm not improving, how long should I wait before I conclude that I'm not improving yet and need to add another food to my eliminated group?) Thanks again!!

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Just quickly to start with, black pepper is not a nightshade, comes from a different family and is quite safe.

I am wondering if you have tried taking any digestive enzymes to help your GI system out. Many of us have pancreatic insufficiency where the pancreas does not produce enough of the digestive enzymes to help us properly process our food, and taking enzyme supplements made such a difference for me. They are certainly worth a try. You might try some probiotics too, to help the good bacteria in your gut.

Going gluten free is not a magic switch which turns off all the symptoms. It is the beginning of the healing process which, depending on the amount of damage that has been done, can take from several months to a year. And of course, if there are other intolerances you do have to find them all, and they will become more apparent as you get rid of the gluten because you will probably react to them more strongly. It seems that the body is so busy dealing with the gluten that it doesn't have time to tell us about all the other things. Once the gluten is gone it sends us "Oh, by the way" messages about the other stuff.

If you do suspect you are intolerant to a food or food group it does pay to eliminate only one thing at a time. But the better way is to start off with a very basic diet of say meat, fish, rice, (non-nightshade) veggies, and fruit (no tough outer skins like apples). Once you have stabilized on that you ADD one food or food group at a time, waiting at least 4-7 days before adding another. That way the reactions become obvious. If you could do this I think you would be much further ahead in a short amount of time.

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Hi,

I've been extremely careful avoiding gluten, and have not had any processed or pre-packaged foods (with the help of another family member, so everything has been double-checked!). However, 5-6 weeks later, my symptoms (upper abdominal and rib fullness/pressure, breathlessness, frequent low-grade headaches) are still present. I've only been eating pure (ie. no sauces or anything) fruit, pure meat, pure vegetables, certified gluten-free grains (including no oats), and supplements I take say gluten-free (and confirmed as such by the pharmacist). I still drink milk, but as a precaution switched to lactose-free. After doing some research, I've now decided to do that diet-avoidance test with lectins. I've read various articles, including the one by Krispin, however the more articles I read, the more confused I get, as it sounds like virtually everything has lectin in it! I tried 'googling' good vs. bad lectins, but got no help from this. Some articles confuse the picture even further by also talking about eating for your blood type . . .

So, my question: what lectin-containing foods should be avoided for those going lectin-free??

Thanks in advance!!

Hi, I recently found out I have Celiacs and I also suffer from RA and Thyroid disease. I am very allergic to dairy so have already been avoiding that as well as beef, lamb, cranberry, sesame seed, and peanut runner. So now that I found out about my gluten intolerance I have switched to gluten free. Unfortunately the traditional gluten free standards only avoid wheat, barley and rye and sometimes oat when actually gluten is found in ALL grains especially corn! I am now going to switch to a grain free diet and hopefully my system will finally improve so I can get off of all my meds.

(Company Name Removed - They Spammed This Forum and are Banned) is probably the most accurate and up to date website on TRUE gluten free diet. They highly advise agains all grains because all grains contain gluten including corn and rice. So if you start off by at least eliminating corn you might notice improvements.

Now as for lectins I have recently been researching and I strongly advise to remove all highly toxin containing lectin foods from your diet and them slowly add 1 food group in at a time to see which one you are sensitive too if not all. I already must avoid nightshade veg. since they are advised against RA. Corn is high in lectin so remove that from your gluten free diet as well. Remove beans/legumes (including soy and peanuts)and also remove all dairy. Lactose free milk still contains dairy so I would switch to almond because it is the safest and it's super delicious. Especailly the Diamond Valley brand in the refridgerator section.

After you eliminate all these for 10 day you can introduce the least toxic ones back into your diet and see if it affects you. Such as NS veg. If you react to it don't eat it. Next introduce dairy, then beans/legumes and last grains. But since you already know you are sensitive to grains that step is not necessary.

So hopefully this elimination diet will help you. I still am not certain on nuts/seeds and eggs as I have heard they are also high in lectin. Good luck to you!

Michelle

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I cant really give anymore advice, you have been given such great advice already and I agree.

I just wanted to say I am really interested in the lectin story too as I also feel Lectins are my problems.

I am taking a protein digestive aid which is an enzyme to help break down food.

Also a pre-biotic mix with l-glutamine which helps repair the gut lining and help your immune system.

A pro biotic

and I also take a supplement called lectin control, which helps with lectins.

I avoid dairy where I can, soy, nightshades and of course gluten, I also have to avoid some fruits, such as kiwi, grapes, apples, pears, beans (lentils I am ok with but not every day. I occasionally slip up and get bloated or sometimes I get away with it, but where I can I try avoid all of the above.

Its really elimination and then try reintroducing them, if you react then wait at least 6-12 months before trying to reintroduce again. I

Also I am huge believer in positive thinking, if you start to get down and stressed about what you cant eat, you end up becoming more intolerant to other things, whereas if you focus on the foods you can eat and keep positive, hopefully you will be able to tolerate them again.

I must admit i find breaky really hard.

Would love to know more about lectins, so I will be keeping an eye on this thread :)

Lisa :)

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I am getting concerned about dairy lectins when I go to the U.S. next month (for 3 months), getting away from the grass-fed (mostly) cows and eating product from cows where you don't know what they have been eating. I am thinking of taking some EasiYo packages over with me and making my own yogurt from them, as I do here, since that is my main dairy consumption; eating coconut milk ice cream, almond milk or rice milk rather than cow's milk, then it would just be sour cream and cheese and such. I can eat sheep's and goat cheeses. I would really hate, hate, hate it if I had to give up dairy too :( I already can only eat grass-fed beef in the U.S. and I am sure it is because the corn and whatever else lectins have got through the gut barrier of the cattle (cattle leaky gut syndrome :lol:).

I have given up high-lectin-containing foods in the following order: gluten grains, soy, nightshades, citrus (I think I can get this one back soon), all legumes (including fresh green peas and green beans). peanut butter and peanuts. Some of these I had been eating only in limited amounts before kicking them out entirely. I used to be lactose intolerant but could eat other dairy; now I can eat all dairy and I don't want to lose that :unsure:

I don't think enough research is being done on lectins.

By the way, the gluten in corn is different from the other gluten grains; but it is still very high in lectins. It is my belief (which I can't support with any research) that the problem a lot of people have with wheat, rye and barley is due to the lectins, not to the gluten per se. These are the people who also have problems with soy, corn, dairy, etc., etc. although if you read about lectins it is rare to be intolerant to all the high-lectin foods.

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I cannot tolerate dairy and neither can my daughter, although its hard to stop her, I try to limit how much she has, otherwise she gets awful wind.

I do have issues with Soy, and Beans, although I am ok with peas and green beans, I am also ok with lentils.

It would be really good to hear of more research been done with lectins. I have found after 12 months of no potatoes, I can tolerate in very small moderation, I pinched a couple of my daughters hot chips the other day and didn't end up bloated and in pain.

It is hard to limit all of them although I do believe once we have improved our digestive system and immune system and the cells in the intestinal wall have improved it is possible to tolerate some of these foods again.

Good luck with your travels, I hope you are able to keep eating they way you have been.

:)

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Thanks Lisa.

I just added a new lectin to my list this week. Had eaten a couple of crackers that I hadn't previously eaten and suffered a horrible night thrashing around in agony; finally staggered downstairs at 5:30 a.m. and typed into my computer quinoa (the crackers contained this) and lectins, and bingo, up popped the high-lectin response. This is getting very old...... I'm sick of it (literally :lol: )

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You should look at the book Eat Right 4 Your Type by Dr. Peter J. D'Adamo. He gives you a list of foods that you should eat for your blood type all based on lectins. Beneficial foods are like medicine in your body, neutral foods are ok and avoid foods are ones you don't want because your body reacts to the lectins. My husband has several food intolerances including gluten, soy, dairy, nightshades, legumes and certain nuts. This book has helped him and we try to get in as many beneficial foods as possible.

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You should look at the book Eat Right 4 Your Type by Dr. Peter J. D'Adamo. He gives you a list of foods that you should eat for your blood type all based on lectins. Beneficial foods are like medicine in your body, neutral foods are ok and avoid foods are ones you don't want because your body reacts to the lectins. My husband has several food intolerances including gluten, soy, dairy, nightshades, legumes and certain nuts. This book has helped him and we try to get in as many beneficial foods as possible.

I'm a Type A, and he sure didn't get it right for me :(

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You should look at the book Eat Right 4 Your Type by Dr. Peter J. D'Adamo. He gives you a list of foods that you should eat for your blood type all based on lectins. Beneficial foods are like medicine in your body, neutral foods are ok and avoid foods are ones you don't want because your body reacts to the lectins. My husband has several food intolerances including gluten, soy, dairy, nightshades, legumes and certain nuts. This book has helped him and we try to get in as many beneficial foods as possible.

Thanks, I have read a book Eat right for your type, my naturopath recommended it, not sure if was same author or not, might have a look and see, the problem for me was some of the foods which suited my A+ blood type were some of the foods, like certain beans and fruits which I react negative too... But I do think its right I need to avoid meats, especially red meats, and wheat and diary, all of wish I cant tolerate, so there is some relevance behind the blood type diet and my particular diet.

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I found Dr. D'Adamo's book to not be particularly relevant for me because I can't eat a lot of the foods he said I should be eating. And I can eat red meat just fine (so long as it is not regular American beef - it must be grass-fed organic). Yes, I am a Type A+.

Edit: sorry, I just noticed I posted much the same previously :(

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Lisa79, I would suggest checking out the Dr. Loren Cordain stuff online. He writes "The Paleo Diet" series. He does such an awesome job at explaining what lectins are in which foods, and how they affect the body. He also explains why the eat right for your type diet is off base, and why it would not work for anyone with celiac if they were to eat gluten, etc...

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i think if you want to be lectin free then you have to go on a strict paleo diet. no modern foods whatsoever. no grains, no dairy, no legumes, no processed foods, and eliminate as much as possible modern hybridized vegetables like white potato and perhaps certain modern fruits.

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I'm having similar frustrations with additional foods I'm sure are causing me problems, but I haven't pinpointed them yet. I'm debating whether to try a lectin-free diet, or elimination diet (which I don't really wanna do lol) or paleo-diet. It all feels so confusing :P

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