Cross Reactivity Confusion

[Fbmb]

I'm so confused about all of these articles online (from blogs, mostly) that claim that there are 19 different foods that are "cross reactive" with gluten. I'm sure that most of you know what I'm talking about. I've also seen a lot of forums on here with experienced members expressing frustration at these articles, and explaining that this is a myth. 

My confusion is: does cross reactive mean that when a person ingests coffee, for example, their body creates antibodies against the coffee and that their immune system attacks their small intestines (causing atrophy, blunted villi, damage), just as if they'd eaten a donut? Or does cross reactive mean that some people are simply intolerant to some of these 19 different foods? It's my understanding that being "intolerant" to something isn't the same as being allergic to something. So, for someone who is lactose intolerant, drinking a big glass of whole milk might make them feel yucky and cause GI issues, but it isn't going to cause internal damage to their intestines like gluten will for someone who has celiac disease. I do know that many of us are intolerant to soy, corn, dairy, etc. But this theory about cross reactivity sounds different than an intolerance. It sounds like these people are saying that our bodies could mistake these 19 foods for gluten, and that they'll actually make us sick - not just uncomfortable.

I notice that sometimes coffee bothers my belly, but I know that coffee tends to bother everyone. It's a natural laxative. But after reading these articles I got to thinking, "Is my body creating antibodies to coffee and mistaking it for gluten?" My numbers dropped down to normal after my first year being gluten-free, and I had cut out coffee that whole year - because I knew I needed to let myself heal. But I introduced it again in February and I haven't had my numbers checked since. I'm due for my annual in November. I drink Peet's coffee. I called them and they said that all of their coffees are gluten free, and went so far as to telling me that all of their syrups are gluten free, so that if I ever visit a Peet's shop and want a caramel latte I'm safe. I do buy pre-ground, but I figure that if all of their coffee is gluten free then pre-ground shouldn't be an issue, right? My aunt has celiac disease and she thinks this whole theory about cross reactivity is a bunch of bunk. What do you guys think? 

Stuff like this is difficult for newbies (I still consider myself rather new), because it fuels that "everything is gluten everything is making me sick everything is bad" fire that so many of us feel. If my stomach is "off" I spend hours backtracking to see what it could have been. I usually realize "I didn't eat gluten. It must just be something else" but then I read articles about cross reactivity and find myself perplexed, wondering if I'm glutening myself with coffee, corn, chocolate, etc because my body is mistaking these things for gluten (not because they are contaminated with gluten - which is obviously going to cause problems).

I also question the validity of anything from Cyrex, mostly because they have come up with this theory, and they are also charging people an arm and a leg to test for this. My GI doc has never talked to me about any of this. I will say that. Thoughts? Is cross reactive just "intolerant" or does it mean that my numbers are increasing because I drink 2 cups of Peet's a day?

[DanielleLatrice]

Wow!! I’ve not read or heard of this but let me tell you!! I can not drink coffee. And I just recently, within the last 6 months, understood that coffee really makes me sick from GI to headaches. And to be honest, I am just now gaining weight and having happy belly the majority of the time. 

[Fbmb]

7 minutes ago, DanielleLatrice said:

Wow!! I’ve not read or heard of this but let me tell you!! I can not drink coffee. And I just recently, within the last 6 months, understood that coffee really makes me sick from GI to headaches. And to be honest, I am just now gaining weight and having happy belly the majority of the time. 

Funny thing for me is, coffee is one of the only things that will get rid of a headache for me, besides ibuprofen. Coffee is a headache trigger for some though. My friend gets migraines and her doctors told her not drink coffee. And it does cause GI issues because it’s acidic, so it can cause nausea and bother ulcers. It’s also got caffeine in it, which jump starts your digestion and can cause diarrhea. But I don’t know that any of that is related to gluten. I think some people just don’t tolerate coffee well, Celiac or not.

[kareng]

There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response.  The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten.  But people love  a good conspiracy theory and to pretend to be experts on the internet and spread nonsense on forums.  

 

https://www.cureceliacdisease.org/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity/

 

[kareng]

And because no one will actually follow the legitimate link I gave and read it - here is what it says-

“There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.”

[Ennis-TX]

I doubt cross reactivity, intolerance and food sensitivities I will credit. I also doubt they cause villi blunting. Here is a perspective for you. You drink a TON of a liquor or a food and get sick, then when ever you smell it, taste it again, you instantly feel sick. Its like that it seems with many food issues. You ate something with gluten that does not contain gluten and your body just makes you feel ill from it (Psychological) . OR on this same line you get a sensitivity to said item. You body is having a response it and trying to fight it (again no villi damage). Another theory with may foods is a enzyme issue that can be compounded by damaged intestines and lack of said enzymes. If you body can not break down some compounds correctly it can get overloaded, and make you feel sick, trigger a immune response if it gets where it should not be.

https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

 

[Fbmb]

I appreciate everyone’s feedback.  

[Fbmb]

1 hour ago, kareng said:

There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response.  The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten.  But people love  a good conspiracy theory and to pretend to be experts on the internet and spread nonsense on forums.  

 

https://www.cureceliacdisease.org/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity/

 

The fact that they would use something that contains gluten to test their theory seems to tell me that they are morons. Why wouldn’t they use pure coffee and ensure it’s gluten free before doing this?

[kareng]

58 minutes ago, Fbmb said:

The fact that they would use something that contains gluten to test their theory seems to tell me that they are morons. Why wouldn’t they use pure coffee and ensure it’s gluten free before doing this?

Even better - the last time I talked with their rep at a Celiac conference she admitted about the gluten in the coffee , showed me the reports of the study that showed the gluten contamination , and still tried to say the cross reactive thing with coffee is legit!  Ugh!

  

[Fbmb]

42 minutes ago, kareng said:

Even better - the last time I talked with their rep at a Celiac conference she admitted about the gluten in the coffee , showed me the reports of the study that showed the gluten contamination , and still tried to say the cross reactive thing with coffee is legit!  Ugh!

  

If nobody has, someone on this site should do a write up about this, because there are TONS of blogs and sites that are feeding the public this stuff. 

[jeanniemiller]

3 hours ago, kareng said:

There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response.  The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten.  But people love  a good conspiracy theory and to pretend to be experts on the internet and spread nonsense on forums.  

 

https://www.cureceliacdisease.org/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity/

 

i'm new since april  celiac  by blood work and I got away from the forums they confused me and made me crazy it is so sad they are there to help instead some people drive newbies away

[kareng]

13 minutes ago, Fbmb said:

If nobody has, someone on this site should do a write up about this, because there are TONS of blogs and sites that are feeding the public this stuff. 

There are legitimate places that dispute this.  Unfortunately, people like to believe what they read by people who claim to know what they are talking about and won’t even read what we have written here.  All they will see is the claim of cross reactivity - they won’t bother to read beyond that part.

[kareng]

2 minutes ago, jeanniemiller said:

i'm new since april  celiac  by blood work and I got away from the forums they confused me and made me crazy it is so sad they are there to help instead some people drive newbies away

So, providing the correct info from actual Celiac researchers drives you away?  I hope I have read that wrong!  I would love it if people on blogs only posted correct info, but they often don’t.  So I think going to a legitimate source is best. They have lots of good info on the celiac center of Chicago site. 

[Fbmb]

33 minutes ago, kareng said:

So, providing the correct info from actual Celiac researchers drives you away?  I hope I have read that wrong!  I would love it if people on blogs only posted correct info, but they often don’t.  So I think going to a legitimate source is best. They have lots of good info on the celiac center of Chicago site. 

This is why I come here. I get good info from you guys and I trust what most people say  on here.

[Fbmb]

40 minutes ago, jeanniemiller said:

i'm new since april  celiac  by blood work and I got away from the forums they confused me and made me crazy it is so sad they are there to help instead some people drive newbies away

There’s a lot of confusing info, that’s for sure. I will say though, I couldn’t have done it without these guys on here. I can come here to ask all kinds of crazy questions, ask about products, vent. If you poke around a bit you’ll get to know some of the really experienced folks on this site. I’ve even pm’d some of them during my darkest moments as a newbie. I would recommend you coming here! But as for blogs, there’s a lot of bad information out there.

[kareng]

3 minutes ago, Fbmb said:

This is why I come here. I get good info from you guys and I trust what most people say  on here.

Thanks.  ?

[GFinDC]

4 hours ago, jeanniemiller said:

i'm new since april  celiac  by blood work and I got away from the forums they confused me and made me crazy it is so sad they are there to help instead some people drive newbies away

Hi jeannie,

You are right, there is a lot of confusing information about gluten on the internet.  Plenty of web sites are just trying to make money off people being sick and want to sell them some kind of gluten cure book or something.  That's actually a pretty good way of telling if the web site's info is reliable.  If they spend most of the web site verbiage on pushing things for people to buy then it is obvious that's their main goal.

[Martin-0123]

Hi everyone. I'm pretty new to all of this but I'm most likely a non-celiac, who happens to be intolerant to wheat/soy/yeast/casein/veal and beef. I'm also intolerant to peanuts and sunflower seeds but I've never had a reaction to them.

My symptoms didn't start until after I was diagnosed with mitral valve prolapse in 2016 (one auto-immune disease leads to another) so thanks to that, I was introduced to the auto-immune diseases world and was able to detect my gluten intolerance within a year, whereas most people would take years. I had the anti-bodies test and it proved negative (of course) so I didn't go for the biopsy because either way I'd have to remain gluten free, whether with a diagnosis or not. 

My question was: What has melon got to do with all of this? I eat melon and suddenly my skin itches like it used to when I'd ingest white bread without knowing I'm reacting to the gluten, and my arms and legs would itch.. Except now it starts immediately upon eating melon so I know it's that who the culprit is. Does it have to do something with FODMAPS?

I'm not intolerant to any fruit, given the food sensitivity test I took, but I react horribly to melon and it's not fair cause I've always loved eating melons and now I can't have any desert which is not a banana because of this. I can't even eat honey because when I do, I get pain in the lower stomach area that feels like death. I haven't felt such pain not even when eating spaghetti, which feels like cramps. 

If it's not celiac, does this mean I have a leaky gut or maybe Crohn's? Because my Crohn's anti-bodies were elevated 7.6 < 20 (within the limit, though) but the IgG, IgA etc. were 2.0 < 20, which is below average - Unless I don't know how to read them properly.. Any ideas, please?
 

[Ennis-TX]

23 minutes ago, Martin Shipinkoski said:

Hi everyone. I'm pretty new to all of this but I'm most likely a non-celiac, who happens to be intolerant to wheat/soy/yeast/casein/veal and beef. I'm also intolerant to peanuts and sunflower seeds but I've never had a reaction to them.

My symptoms didn't start until after I was diagnosed with mitral valve prolapse in 2016 (one auto-immune disease leads to another) so thanks to that, I was introduced to the auto-immune diseases world and was able to detect my gluten intolerance within a year, whereas most people would take years. I had the anti-bodies test and it proved negative (of course) so I didn't go for the biopsy because either way I'd have to remain gluten free, whether with a diagnosis or not. 

My question was: What has melon got to do with all of this? I eat melon and suddenly my skin itches like it used to when I'd ingest white bread without knowing I'm reacting to the gluten, and my arms and legs would itch.. Except now it starts immediately upon eating melon so I know it's that who the culprit is. Does it have to do something with FODMAPS?

I'm not intolerant to any fruit, given the food sensitivity test I took, but I react horribly to melon and it's not fair cause I've always loved eating melons and now I can't have any desert which is not a banana because of this. I can't even eat honey because when I do, I get pain in the lower stomach area that feels like death. I haven't felt such pain not even when eating spaghetti, which feels like cramps. 

If it's not celiac, does this mean I have a leaky gut or maybe Crohn's? Because my Crohn's anti-bodies were elevated 7.6 < 20 (within the limit, though) but the IgG, IgA etc. were 2.0 < 20, which is below average - Unless I don't know how to read them properly.. Any ideas, please?
 

First off the food sensitivity test...is a waste of money and completely hit miss. A allergy test is what you need, and even then it can be a bit iffy. Your melon reaction sounds like a allergic reaction, you can get allergies, food intolerance, and sensitivities at any time. There have been many people here that react to honey.....local honeys here used to give me allergic reaction due to the plants they harvested from here I assume, but birchwood honey never gave that...but did cause me some bloating, and bleeding but that was diagnosed UC back then and not gluten related.

Keep a food diary, see what foods you react to, limiting your diet to a safe baseline diet then trying suspects and record the reactions.

[kareng]

44 minutes ago, Martin Shipinkoski said:

Hi everyone. I'm pretty new to all of this but I'm most likely a non-celiac, who happens to be intolerant to wheat/soy/yeast/casein/veal and beef. I'm also intolerant to peanuts and sunflower seeds but I've never had a reaction to them.

My symptoms didn't start until after I was diagnosed with mitral valve prolapse in 2016 (one auto-immune disease leads to another) so thanks to that, I was introduced to the auto-immune diseases world and was able to detect my gluten intolerance within a year, whereas most people would take years. I had the anti-bodies test and it proved negative (of course) so I didn't go for the biopsy because either way I'd have to remain gluten free, whether with a diagnosis or not. 

My question was: What has melon got to do with all of this? I eat melon and suddenly my skin itches like it used to when I'd ingest white bread without knowing I'm reacting to the gluten, and my arms and legs would itch.. Except now it starts immediately upon eating melon so I know it's that who the culprit is. Does it have to do something with FODMAPS?

I'm not intolerant to any fruit, given the food sensitivity test I took, but I react horribly to melon and it's not fair cause I've always loved eating melons and now I can't have any desert which is not a banana because of this. I can't even eat honey because when I do, I get pain in the lower stomach area that feels like death. I haven't felt such pain not even when eating spaghetti, which feels like cramps. 

If it's not celiac, does this mean I have a leaky gut or maybe Crohn's? Because my Crohn's anti-bodies were elevated 7.6 < 20 (within the limit, though) but the IgG, IgA etc. were 2.0 < 20, which is below average - Unless I don't know how to read them properly.. Any ideas, please?
 

Maybe you are allergic to melon?  Food allergy testing is not currently, very accurate.  

[Martin-0123]

58 minutes ago, Ennis_TX said:

First off the food sensitivity test...is a waste of money and completely hit miss. A allergy test is what you need, and even then it can be a bit iffy. Your melon reaction sounds like a allergic reaction, you can get allergies, food intolerance, and sensitivities at any time. There have been many people here that react to honey.....local honeys here used to give me allergic reaction due to the plants they harvested from here I assume, but birchwood honey never gave that...but did cause me some bloating, and bleeding but that was diagnosed UC back then and not gluten related.

Keep a food diary, see what foods you react to, limiting your diet to a safe baseline diet then trying suspects and record the reactions.

Well, maybe.. For me it was the proof that my body was falling apart that I could show to doctors so they stop saying how my symptoms were 'in my head' and prescribing me anti anxiety pills when in reality I was living with the fear I might have lymphoma while experiencing all the horrible symptoms. I had the night sweats, itchy skin for months, extreme bouts of fatigue, bone pain, scalp sores and many others. I wasn't really far from the truth because gluten exposure CAN actually cause you that so you can imagine the distress I found myself into when I discovered that gluten exposure for years or during the first five years upon diagnosis leads to malignancy. 

If it hadn't been for the test, I would have kept ingesting soy through chocolate or corn flour because the one we have here contains soy, despite being gluten free. The only complain I have about it is that eating corn makes me bloated immediately, but I've learnt that most celiacs should also omit it if it causes them trouble, regardless of the fact that corn is apparently safe. 

That's what I've been doing and found out that white rice causes me symptoms so I've swapped it with brown rice. Also apples cause me itching but I think that's due to the natural yeast that's on them. If I eat them peeled, then I don't have a reaction. Thanks, though.. I simply asked cause I found it unusual that melon, out of all the fruits, would cause me this. I have eaten plums, peaches, apricots, strawberries, bananas and many others, but no reaction. Melon is like bathing in wheat for me and causes immediate itching. 

I'm still learning so I will definitely do that. Thanks for the time:)

52 minutes ago, kareng said:

Maybe you are allergic to melon?  Food allergy testing is not currently, very accurate.  

I must be. I was just wondering if there's a reason behind it. Cause sometimes I google about it and write the word 'celiac' next to my question in the search engine and find out that it's related, but I couldn't trace it with melon so that's why I decided to ask. It's like being born again and finding what you can and cannot eat hah

[GFinDC]

Hi Martin,

People with celiac disease seem to develop reactions to foods fairly often.  Probably because our guts are often in an irritated condition.  Sometimes for years before diagnosis or going gluten-free.

Food reactions are not always permanent though.  If you stop eating the offending food for 6 months and then try a little of it maybe it will be ok,  But maybe not too.  Allergies are a different reaction than celiac disease.  Allergies involve IgE immune cells while celiac is an IgA or IgG immune reaction.

An elimination diet is helpful to sort out food reactions.  You do need to be somewhat careful of allergies as their symptoms can get more severe suddenly.  A skin prick test is probably the most reliable allergy test you can get right now IMHO.  And feeling like a pin cushion is worth it!

[Fbmb]

There's an old thread about coffee that someone just posted in today, that comes up in this same section. I just looked through it. Someone posted today about cross reactivity, insinuating that it's science based and factual. I really think that if this isn't true, and if it's bunk science, the people in charge of this site need to put the kobash on people posting about it, because it's dangerous. People could end up spending thousands of dollars in medical bills trying to figure out if they're reacting to coffee, milk, chocolate, etc. The one thing my doctor told me when I was diagnosed was to cut out gluten - and nothing else, unless it made me feel bad, because he said that people restrict themselves too much and that can cause a host of other issues. He has never told me that milk, coffee, rice, or ANYTHING are going to make me sick like gluten does. He told me to take Lactaid if milk bothers me. I don't think he would have told me to take Lactaid if he thought that my body was mistaking dairy proteins for gluten and attacking my intestine.

It's my understanding that cross reactivity and intolerances are totally different things. We all have intolerances, as do most people. That doesn't mean that your body sees coffee proteins and starts attacking your body like it would if you ate gluten. Just because you can't digest something or it gives you a belly ache doesn't mean that it's having the same impact on you as gluten does. Intolerances do not equal allergies or AI diseases. It seems to me that after reading all of the posts on this thread, the theories about cross reactivity are untrue, and I'm tired of people spewing a bunch of nonsense about things that aren't true. A newly diagnosed celiac or a person who is prone to paranoia could read things like that and end up eating a diet of boiled chicken and water. Come on.

[Ennis-TX]

55 minutes ago, Fbmb said:

There's an old thread about coffee that someone just posted in today, that comes up in this same section. I just looked through it. Someone posted today about cross reactivity, insinuating that it's science based and factual. I really think that if this isn't true, and if it's bunk science, the people in charge of this site need to put the kobash on people posting about it, because it's dangerous. People could end up spending thousands of dollars in medical bills trying to figure out if they're reacting to coffee, milk, chocolate, etc. The one thing my doctor told me when I was diagnosed was to cut out gluten - and nothing else, unless it made me feel bad, because he said that people restrict themselves too much and that can cause a host of other issues. He has never told me that milk, coffee, rice, or ANYTHING are going to make me sick like gluten does. He told me to take Lactaid if milk bothers me. I don't think he would have told me to take Lactaid if he thought that my body was mistaking dairy proteins for gluten and attacking my intestine.

It's my understanding that cross reactivity and intolerances are totally different things. We all have intolerances, as do most people. That doesn't mean that your body sees coffee proteins and starts attacking your body like it would if you ate gluten. Just because you can't digest something or it gives you a belly ache doesn't mean that it's having the same impact on you as gluten does. Intolerances do not equal allergies or AI diseases. It seems to me that after reading all of the posts on this thread, the theories about cross reactivity are untrue, and I'm tired of people spewing a bunch of nonsense about things that aren't true. A newly diagnosed celiac or a person who is prone to paranoia could read things like that and end up eating a diet of boiled chicken and water. Come on.

I think sensitivities is the class issue he is talking about...I know the body can get confused by thing that are similar to gluten, and eaten with gluten and develop a sensitivities or even allergy. But for another non gluten food to trigger the immune system to destroy your villi, nervous system(gluten ataxia) or skin (DH).....I do not think (would hope not) is possible. Now there are some other AI disease with similar issues but no known triggers.

"1. Food allergies: These are correlated with the immune system and elicit the most serious and immediate reaction, including rashes, itching, hives, anaphylaxis (difficulty breathing), and swelling. This type of food allergy is irreversible.

2. Food intolerances: These intolerances are usually the result of enzyme deficiencies. Intolerances don’t directly involve the immune system and normal happen when your digestive system is simply irritated by certain foods or cannot digest them.

3. Food sensitivities: The reason behind sensitivities can be more difficult to pinpoint. Some people can even eat tiny amounts of these foods and not always have symptoms. When symptoms do occur, they are a lot less severe than allergies but can be just as debilitating and include migraines, brain fog, inflammation, digestive problems, and bloating.

"All disease begins in the gut." I cannot mention this famous quote from Hippocrates enough. When your microbiome is weakened, it can lead to increased inflammation and a cascade of other health problems including food intolerances and sensitivities. For example, when your gut is compromised, like in leaky gut syndrome, foods end up passing through the gut lining into the bloodstream. This can cause the immune system to react and trigger inflammation throughout the body. When this happens, the immune system can end up reacting to any food that passes through—even healthy ones"

 

[Fbmb]

1 hour ago, Ennis_TX said:

I think sensitivities is the class issue he is talking about...I know the body can get confused by thing that are similar to gluten, and eaten with gluten and develop a sensitivities or even allergy. But for another non gluten food to trigger the immune system to destroy your villi, nervous system(gluten ataxia) or skin (DH).....I do not think (would hope not) is possible. Now there are some other AI disease with similar issues but no known triggers.

"1. Food allergies: These are correlated with the immune system and elicit the most serious and immediate reaction, including rashes, itching, hives, anaphylaxis (difficulty breathing), and swelling. This type of food allergy is irreversible.

2. Food intolerances: These intolerances are usually the result of enzyme deficiencies. Intolerances don’t directly involve the immune system and normal happen when your digestive system is simply irritated by certain foods or cannot digest them.

3. Food sensitivities: The reason behind sensitivities can be more difficult to pinpoint. Some people can even eat tiny amounts of these foods and not always have symptoms. When symptoms do occur, they are a lot less severe than allergies but can be just as debilitating and include migraines, brain fog, inflammation, digestive problems, and bloating.

"All disease begins in the gut." I cannot mention this famous quote from Hippocrates enough. When your microbiome is weakened, it can lead to increased inflammation and a cascade of other health problems including food intolerances and sensitivities. For example, when your gut is compromised, like in leaky gut syndrome, foods end up passing through the gut lining into the bloodstream. This can cause the immune system to react and trigger inflammation throughout the body. When this happens, the immune system can end up reacting to any food that passes through—even healthy ones"

 

I can definitely deal with intolerances and allergies. They need to be dealt with. And I definitely think that people should stay away from foods that their bodies don't like, because why keep eating things that make you feel like crap? But the idea that drinking coffee could be causing my immune system to freak out and attack my intestine and do damage to me like gluten does was just mind blowing to me - and honestly, really upsetting. It makes me feel relieved to know that it doesn't work that way.