Cross-reactivity?

[slpinsd]

I had an appt w/my Naturopath and I told her how I believe I was glutened from Bob's Red Mill Chocolate Chip Cookie mix. I have had instant reflux and breathing difficulty after eating the cookies. There is another post on the gluten-free Product Thread. Anyhow, she said that I may be experiencing CROSS-REACTIVITY- where there is something in the ingredients that is molecularly close to gluten, so the body recognizes it as gluten- and thus produces a true gluten reaction. Has anyone had any experience with this? What ingredients are "molecularly close" to gluten????

[Mango04]

I believe that oat protein and casein are both "molecularly close" to gluten but I don't know much about this. Do you mind if I ask who your natruropath is? She sounds like she might know what she's doing

[slpinsd]

I believe that oat protein and casein are both "molecularly close" to gluten but I don't know much about this. Do you mind if I ask who your natruropath is? She sounds like she might know what she's doing

Hey meredith-

i just sent you a pm

[Guest BERNESES]

This is a GREAT question. I think you're right about the oats and casein being close molecularly (if that's even a word )

[slpinsd]

This is a GREAT question. I think you're right about the oats and casein being close molecularly (if that's even a word )

hmm.......none of that in there. ingredients: brown sugar, evaporated cane juice, garbanzo bean flour, potato startch, semi-sweet choc chips (sular, unsweetened chocolate, cocoa butter, soy lechithin, vanilla), tapioca starch, WHOLE GRAIN WHITE SORGHUM flour, fructose, fava bean flour, xanthan gum, baking soda, sea salt, natural vanilla powder. that whole grain word freaks me out- maybe it's that. Or just too much sugar for me. Or the fructose. Who knows.

[Guest BERNESES]

Oh- I forgot to add that I know there are some people on the board who have reacted to Bob's red Mill products because of cross-contamination. Do a search for Bob's Red Mill in the Gluten-free products forum and I KNOW some posts will come up. The mix could have been cross-contaminated.

[aaascr]

Wow - someone who understands that concept!

Being highly allergic and having celiac disease, most proteins don't

always agree with me even if I'm not allergic to them.

I have to take my protein in very small amounts along

with L-glutamine, enzymes and a lot of hope that

I will digest some of it.

[Guest BERNESES]

Actually if you go to the thread "How Strict to We need to be?' radman is a doctor and he was just discussing cross-reactivity. Interesting!

[Rachel--24]

My doctor (whos also a naturopath) talks about cross-reactivity frequently. He says its very common for the immune system to react to other proteins similar in structure to gluten.

This is info from some of the stuff he gave me re: gluten intolerance.

Foods which mimic gluten in the body:

There are foods which do not strictly contain gluten (gliadin is the actual name of the offending protein) but still trigger the same unhealthy response as gluten. How? These foods contain proteins which are so similar to gliadin that people whose bodies are sensitive can’t tell the difference.

For example, soy is considered an OK food for those who are gluten intolerant. But when soy protein is concentrated in the form of tofu, tempeh or soy protein isolate (founds in soy-based protein powders and protein bars) that concentrated protein appears so similar to gluten that your body reacts to it the same as if you were consuming gluten.

Oats is another example. There are gluten free societies which will get quite impassioned when defending oats. Others don’t recommend oats due to a problem of unacceptable levels of contamination. We all agree that oats has a different protein from wheat, rye and barley. But the problem is that when a gluten intolerant person consumes oats they react to it the same as if they were consuming wheat! So please be cautious when reading other materials or consulting other web sites which say that oats, amaranth, quinoa and tef are fine. From a chemical standpoint they do have a different protein but from a practical, clinical standpoint they still create reactions which is ultimately what we are trying to avoid.

The science behind the above statements has been proven by measuring an inflammatory enzyme which gets elevated in gluten intolerant people who consume gluten. The experiment took gluten intolerant patients who had been off gluten and measured the enzyme to get a baseline. The baseline was normal. The patient then consumed one of the supposedly “OK” grains listed above. When the enzyme was retested it was found to be high, confirming a reaction to the grain.

So while we all like the sound of being able to eat oatmeal please remember that it is not okay and the above proves why.

[Guest BERNESES]

rachel- Tthank you- that post was REALLY helpful and maybe this explains some of what's been going on with me.

[jerseyangel]

Yep--I react to soy and oatmeal, and that explain why--thanks! BTW Rachel--hope everything is ok, haven't seen you in a while.

[Rachel--24]

Yep--I react to soy and oatmeal, and that explain why--thanks! BTW Rachel--hope everything is ok, haven't seen you in a while.

I'm OK!

For some reason the board wasnt letting me post at all yesterday...I kept getting an error message.

I've been concentrating really hard on my diet....trying to figure out what the heck I'm doing wrong. I think I may have figured it out....and I'm feeling really dumb about it. Casein intolerance....its giving me the same problems as gluten.

When I got my Enterolab results mine was neg. for casein (barely). It was a 9...10 being positive. I wasnt eating dairy at all for 4 months before testing but I definately wasnt casein free cuz I was taking probiotics and all kinds of supplements. Anyways I'm *highly* addicted to dairy...always have been. When I was healthy I used to always tell people if there was one thing I couldnt live w/out it would be milk. I was always obsessed with milk.

I have been having dairy off and on since I went gluten-free and I always get problems from it so I stop for awhile. I've never even *considered* being casein intolerant. Looking back at my food journals its pretty obvious. Yogurt gives me "D" or loose stools every time I ate it. Cheese got me really constipated (couldnt go for 2 weeks). All dairy gives me a migraine and eye pain and excema.

Ummm...how dumb am I? Anyways, for 2 months now I've had bad excema and feel pretty crappy everyday. Some days I felt like I could barely walk I was so weak...like before I went gluten-free. I figured it wasnt dairy cuz I wasn't eating any. I then decided to have cheese (since its ok on SCD)...I ate one huge block in less than a day...I couldnt stop. I then ate cottage cheese. I got a bad reaction, the next day I woke up with major fluid retention and like I said...I got constipated for 2 weeks. Excema got worse and everything else got worse. My headache never goes away.

I've been taking Transfer Factor (from my doctor) for 2 months now. Its for the immune system and its got colostrum. I also take 2 probiotics (one has lactose). I take the TF 3 times a day and I break open the pills and put the powder either directly into my mouth or in a little bit of water. It tatses REALLY good to me...like milk.

A couple days ago I realized I was tempted to keep taking more pills...it was like I couldnt wait till it was time to take more. I realized there was something "not right" about that and looked up TF and Colostrum online. Its from cows...its got casein in it.

I stopped taking the TF and probiotics 2 days ago and I'm feeling better. Its a very noticeable difference at work...I'm much more productive the past 2 days. The past 2 months I've been literally dragging through the day. My headache seems to be getting better too.

Maybe this is why I still have unexplainable malabsorption. Well...I wonder how long w/out casein till I can really know for sure if that was holding me back from healing?

I'm mourning the loss of dairy and I dont know if I can stop obsessing about it. I was never like this over gluten. Guess what I do for work? I work for Safeway and I run the DAIRY dept! All this time I've been thinking about when I can start eating all the yogurt and cheese again.

Oh well...if I get better casein free I'll be too happy to look back and cry over spilt milk.

I totally believe in the cross-reactivity theory. Why do so many of us have to be casein free too? We know its because the 2 proteins are so similar in structure and we know this to be true for oats as well...so why not soy and some of the other grains? It makes sense.

[Rachel--24]

Also I read this informative post on the BrainTalk site.

I thought about some of us who are highly sensitive when I read it. Its the 5th post down (post #15).

Open Original Shared Link

[mookie03]

Hey Rachel, thanks for that info, very interesting!! and im sorry to hear you are still having to work soooo hard to just feel ok Quick question, on the cross-reactivity, other than protein bars/supplements, what else should we watch out for w/ the soy protein? I mean, would soymilk cause this kind of reaction? I am guessing soy ice cream would, as i am pretty sure soy protein isolate is one of the first ingredients...i have recently eliminated dairy too and thus have increased my soy intake, so im just curious!

[Rachel--24]

Quick question, on the cross-reactivity, other than protein bars/supplements, what else should we watch out for w/ the soy protein? I mean, would soymilk cause this kind of reaction? I am guessing soy ice cream would, as i am pretty sure soy protein isolate is one of the first ingredients...i have recently eliminated dairy too and thus have increased my soy intake, so im just curious!

I'm not really sure...it probably depends on the individual. Some people may not have a problem with soy at all....some may have problems with all forms of soy. Personally I'm avoiding all soy for now. I've had bad reactions to plain unsweetened soy milk. The only ingredients were organic soybeans and water. Anyways my body has been highly reactive this whole time so anything could cause a reaction so I dont know for sure about soy. I will have to test these things whenever I get out of this reactive state I'm in (if that ever happens). Also I have thyroid disease so soy is probably not a good thing for me to be consuming anyway. Soy is bad for thyroid.

I have to say my worst reactions besides gluten have been from dairy and soy.

[Guest cassidy]

Rachel, I pulled these from your post (but I couldn't quote the quote) soy oats, amaranth, quinoa and tef - based on what people know, are these the only ones that seem like gluten to our bodies, or could other proteins be seen in the same way? I wonder if when people think they have gotten sick due to cc that it is really something like this happening.

I know that everyone's body reacts differently, but are they saying that in general, most people who cna't have gluten would react to these as well? Is it something that could happen one time and not the next, or is it like gluten and always bad?

After changing my diet so much to get the gluten out, excluding a few more things wouldn't be a big deal.

[mookie03]

Cassidy- this is essentially the same thing i was asking, but I guess i am about to try to answer my own question Thanks, Rachel, you are always so helpful! ok im not a doctor nor an expert on this kind of stuff, so im just going to give you my intuitive answer for whats its worth...I think this is a very subjective area in that everyone's body is different and each person's body may react differently on any given day. Thus, i would say that these foods are probably not an exclusive list and that on any given day another protein COULD masquerade as gluten to our bodies and you COULD get a rxn. BUT these are the proteins most similar to that in gluten, so if you are going to have a gluten-like rxn from something, its likely to be one of the foods rachel listed. Given that line of reasoning, i would say you are not likely to get sick every time you ingest those proteins, b/c it is dependent on whether the protein binds as gluten would. Just my conjecture, i think i have to research this a little to convince myself whether or not im right

[Guest BERNESES]

rachel - You are NOT dumb!!!!! I have always said that dairy would be much harder to give up than gluten. hang in there, Beverly

[mookie03]

I forgot to mention i also think this would get better with time if you adhere to the diet, such that ur body stops "looking" for the gluten. Which is why, as i understand it, a lot of people have problems w/ intolerances for the few few months/year of being gluten-free.

[Rachel--24]

I forgot to mention i also think this would get better with time if you adhere to the diet, such that ur body stops "looking" for the gluten. Which is why, as i understand it, a lot of people have problems w/ intolerances for the few few months/year of being gluten-free.

Yeah....this is exactly what I believe. When our bodies are still very "reactive" any one of these proteins could possibly cause a "gluten" reaction. When we are fully healed we will not "feel" reactions because we wont have leaky gut and our immune systems will have calmed down. Even if we eat trace amounts of gluten we may not experience it the way we do now but the damage is still occurring. This is basically what the person in the thread I posted (a few posts back) was saying.

I have to say my worst reactions besides gluten have been from dairy and soy.

Oh yeah...how could I forget my little experiment with oats. Not a good thing...wont be trying it again.

I know that everyone's body reacts differently, but are they saying that in general, most people who cna't have gluten would react to these as well? Is it something that could happen one time and not the next, or is it like gluten and always bad?

I wouldnt go so far as to say that *everyone* with gluten intolerance should avoid these other grains. I think it depends on alot of things. Are you still feeling "glutened" all the time? Are you still having lots of food intolerances? Are you not steadily recovering from going gluten-free? Do you feel like you are constanly getting c.c. from gluten-free foods? Stuff like that.

I dont think these grains are bad for everyone but people who are not recovering (like me, almost 1 year gluten-free but still having lots of reactions) should avoid some of the foods that are likely to cause gluten-like reactions. Especially casein and soy....and oats should never be eaten anyway. IMO.

[jerseyangel]

Rachel--Glad to hear you're ok and everything. Great to hear you figured out about the casein. This whole discussion has been interesting to me. I have been dairy free (for the most part) longer than gluten-free. After I was gluten-free for a few months, and began to have returning symptoms, I became very strict about the dairy, too. I also found that other grains caused problems for me, so I cut those out, too. Recently, I tried Culturelle--a probiotic. I felt ok at first, but after about 5 or 6 days on it, I started to have constant low ab cramping and mild D. I found out that the Culturelle has lactose. Doing some research on it, I found out that people who are sensitive to dairy may have a problem with it. So, I stopped taking it, and within about 3-4 days, the problem stopped. I am hoping that after the healing is finally complete (how LONG is it going to take?), I may be able to add in a few grains here and there. For now, though, they are hard for me to digest, and a few of them actually cause Celiac-like symptoms.

I can't believe you run the Dairy Dept!! Talk about having the forbidden fruit around you all the time

[plantime]

I am praying that I never have to try living without dairy. The withdrawals alone would most likely do me in!

[Nancym]

Going without dairy is tough. I gave it up on Jan 1, 2006. After a farewell ice cream orgy.

I had the feeling of loss too, even worse than with gluten. However, I'm adjusting! I'm finding great new recipes for meat and veggies and stuff that don't include starches or gluten or dairy. I found a great cookbook and I'm looking forward to using it, "The Garden of Eating".

[Guest BERNESES]

Mookie- I think you made an interesting point. I eat quinoa pasta (I love it!) and one time, after being glutened about 4 days prior, I got really sick after eating it. But I tried it again this week and it seems to be fine. Same thing with lactose- I avoid it like the plague when I've had a reaction. But sometimes I'm OK with it.

I also wonder about something kind of weird. Before I got diagnosed and after I went gluten-free, for about the first 4 months, i ate a ton of peanut butter. I had lost like 20 pounds, was super thin and it was one of the only foods I craved. But after awhile, I started to feel sick when I ate it. i stopped for a bit and am now trying to introduce it back in small amounts (I'm actually trying to rotate all foods as much as possible- especially rice, corn, poptatoes, etc). Sometimes I wonder if, because I was eating so much peanut butter while my immune system was attacking the gluten that my immune system associates it with gluten and attacks it anyway. pure conjecture on my part but it just seems so weird.

[GlutenFreeAl]

I actually noticed the same thing with the peanut butter! I don't eat it every day anymore, but maybe every third day. And no more nausea with it!

I also had a drink (rum) about a day after an accidental glutening (stupid Amy's soups!) and I was literally doubled over in pain all night. I don't even think it was a full shot's worth that I drank. And I was thinking (hoping) that I reacted so badly because my intestines were inflamed and not because I can never drink again.

I'm going to experiment with the alcohol thing again, but I've been scared off for awhile...