Maintaining Some (Small) Tolerance

[Jeff In San Diego]

Hi Everyone,

I'm a new guy here, but in my short time watching I see an extraordinary number of posts about how gluten-free people get more sensitive to gluten over time after they have been gluten-free for years.

I'm wondering if the topic has been discussed before of finding some very small amount of daily gluten intake that somehow falls between zero and an amount that would indefinitely continue to cause symptoms.

Here's my thinking:

1) before diagnosis, each of us has some level of symptoms (from minor to full blown celiac disease and major LH, etc. etc.) while ingesting a "normal" amount of wheat

2) the normally prescribed approach is to get your intake of wheat all the way down to 0.0 and keep it there

3) people who do that (normal gluten-free diet) still take months or years to heal

4) people who do that tend to become extremely sensitive to gluten, where just a puff of it in the air will send them into a couple days of hell

5) we live in a world where wheat is everywhere -- nearly impossible to escape from unless you live in a plastic bubble

There is ample evidence that people who either don't want to be strict about it, or through lack of understanding don't follow the gluten-free lifestyle well enough do not get better and continue to have symptoms (and probably eventually just chuck it altogether and continue to have whatever symptoms they had in the first place). So I'm certainly not proposing a "lax" gluten-free diet. Not a "limit yourself to one slice of bread a day" sort of thing.

I find myself wondering if there might be some (extremely small) amount of gluten which will still give most adherents pretty much the full benefit of gluten-free, while shielding them from the fact that wheat is everywhere around us, and that even when being careful we can get cross contaminated in so many ways.

So I'm just wondering if some very small and measurable/repeatable "dose" of wheat taken each day might maintain the body's willingness to put up with wheat, while not producing significant symptoms. Not saying this is the right amount, but what if, as an example, one small crouton were administered each day. Almost like taking a vitamin pill each morning. The remainder of the diet would remain as close to perfect gluten-free as can be done.

I'm thinking an exposure on this order of magnitude would harden the person to where an occasional toaster crumb or a waft of wheat in the air as you walk past the pastry section of the supermarket would never become a debilitating occurrence?

I would be interested to hear all your thoughts on this. No doubt some will say it makes no sense. Others will claim (and could well be right), that no measurable amount of gluten would be close enough to gluten-free to make most people completely symptom free. I certainly don't have enough experience with this whole thing yet to have a valid opinion on that. I would welcome insight not just from the unfortunate folks who are at the extreme end of the spectrum on wheat sensitivity (either naturally, or as a result of having done a really good job of staying gluten-free for years), but also those members who are more towards the middle of the curve.

[kareng]

Since actual Celiac is an immune response, even the little crouton would cause the production of antibodies and thus damage. If its not Celiac but intolerance....who knows.

[sb2178]

I'd say most people get a small amount of exposure normally in the homeopathic sense of exposure, which is what your theory sounds like. I actually didn't get all the way better until I really really eliminated 99.9% of my exposure, and was more dramatically sick after being exposed during that learning curve that I am now.

Which means

1) I don't react as much to CC now

OR

2) I'm way better at avoiding it

Either are possible. I'm inclined to say that the IgG/IgA-based immune reactions are sufficiently different from classic allergies (IgE) and so the allergy shot approach won't work so well.

[ravenwoodglass]

Celiac/gluten intolerace is autoimmune. Our bodies produce antibodies when glutened. When we get glutened the antibodies 'flare' which is what causes the symptoms. It is our bodies way of trying to protect us from something it recognizes is toxic.

I really don't think that there is a way to maintain or build a tolerance. Some do become less symptomatic after they have well healed when exposed but that takes a long time when it does happen. There was a time when doctors thought that celiac was a childhood disease because after a few years gluten free it was thought that they could go back to eating gluten. We now know that celiac cannot be outgrown although in some cases it might be a long time before the person would become seriously ill again.

You may find that after you have been gluten free for a few years that slight CC or accidental exposure does not cause as severe of a reaction. However it would still not be a good idea to deliberatly expose yourself as damage can be insideous and you might not realize how much damage was being done until it is to late to reverse it.

[shadowicewolf]

Nope, not worth the pain and suffering there after.

[zero]

What you are suggesting sounds a lot like Open Original Shared Link. At least for someone with celiac, this sounds like an exceptionally bad idea since gauging the damage is difficult. I am not gluten free because of the symptoms but rather because of the other consequences which come from the disease. At diagnosis, I suggested to the doctor that because I was mostly symptom free that perhaps I did not need to follow the diet. He suggested I read up on the subject and as a result I am gluten free. Ironically, I am now sensitive at about the crouton level.

[GFinDC]

I think about it a little different than you do. I don't think it's that we become more sensitive, but that we notice the symptoms more.

Imagine you have a forest fire. The forest fire represents your gut on gluten. Now imagine there is a parade of helicopters coming in single file and dumping loads of gasoline on the forest fire. One after another. That's the gluten you are eating pre-diagnosis, every day. Each helicopter load of gasoline causes a flare-up of fire but all in all it is just more burning in an already flaming landscape. The fire is big and bright and glowing. Every load of gasoline makes it brighter but in the overall scheme of things it looks basically the same every day. A big roaring fire.

Now suppose the helicopters stop one day. No more gasoline dumped on the forest. Smokey the bear is pleased. After a few days the flames start to die down. The smoke starts to clear. The fire isn't so bright and roaring anymore. Just some embers and a slow burn going on. Things are settling down, looking more peaceful. Overall there is still a lot of heat and smoke but it's not a crazy out of control firey landscape anymore.

Then one day a while later some no-account creep with a bucket of gasoline in his hand runs up and throws it on the smoking embers. All of sudden you have a roaring fire. Things are blazing again. It looks like the forest fire is ready to take off and roar again.

Try to imagine the affect that one bucket of gasoline would have had while the helicopters were regularly flying over dumping loads of gasoline. It would be pretty insignificant by comparison to the whole burning forest. You might not even notice anything had changed, and the creep might have got away scott-free. But later when the forest is quiet, that one bucket of gasoline sets off a noticeable blaze. You wouldn't have noticed it before because it was part of a much larger conflagration. But when it is set off/isolated by itself, the one bucket of gasoline is more noticeable. The creep is noticed and arrested by Smokey the bear and friends.

Your gut on gluten (pre-diagnosis) is being damaged every day in a wholesale onslaught of immune attacks. Whatever symptoms you have, they are being produced daily on a 24 hours basis. Once you go off gluten, things change. The immune attack slows down, and your gut may start healing very quickly. You may have more energy, because your bodie's immune system is not using as many resources to produce soldiers (antibodies) to attack the gluten invaders. You may start absorbing nutrients better as you heal your intestinal villi. But then the inevitable slip up happens, and the gut is glutened and the attack starts again. You peaceful gut forest is now a war-zone with fires springing up and antibodies attacking them. You have switched from a peaceful, healing happy place to a raging fire zone again. Since this raging fire zone is in your gut, not out in some woodsy forest, you tend to notice the change without watching the news reports. You have changed modes from healing to flaming/burning. It's not that is is more than before, but that is it more noticeable.

Your small intestine is 22 feet long. Think about a scrape on your knee or elbow. Generally if you got a small scrape as a child it was somewhat painful but not a terrible problem. But think about 22 feet of your innards being scraped and burned. That's a lot more territory that is hurting than just an elbow or knee. I think I read that the surface area of the small intestine would cover 2 tennis courts. That's 2 tennis courts of potential damage and pain. Plenty enough for someone to notice if that big an area is hurting. Makes a scraped elbow seem like a joke really. Of course being hidden inside us it is not easy to put a bandaid on it.

Throwing gasoline on the fire every day just isn't a good idea. Especially when the fire is inside your body.

Just another way to look at it. I hope it helps. Good question too, Thanks for bringing it up!

[psawyer]

Just another way to look at it. I hope it helps. Good question too, Thanks for bringing it up!

GFinDC, thank you for that. It is a great analogy.

[T.H.]

I totally agree with Psawyer - great analogy with the forest fire.

[Jeff In San Diego]

What you are suggesting sounds a lot like Open Original Shared Link.

Thanks zero. An interesting read in wikipedia, but not exactly what I'm thinking. Hormesis appears to carry with it the notion of a positive overall effect on health despite the small toxic effect of a small amount of a toxin. I'm not thinking beneficial effect, just thinking vanishingly small negative effect (thimble full of gasoline ) weighed against not allowing the system to get to a point where a few dust particles of wheat puts me in a tailspin.

I just hate the idea of becoming paranoid about gluten and would like to avoid becoming as sensitive to it as many on this forum apparently have become.

I plan on keeping a strict gluten-free diet in the sense of never eating bread and pasta etc. again. Even not eating breaded chicken. Even not eating processed foods that have well labeled small amounts of wheat in them (like something with a dash of soy sauce in it for instance).

Being the contrarian that I am though, I'm thinking maybe I would not go the lengths of skipping something that is labeled as clearly not having any wheat ingredients, but "was processed in a plant that also processes wheat". I don't want to have to think about it when I go to a restaurant beyond ordering the right things. Don't want to have to worry about whether the chef standing next to the grill where my steak is being cooked is mixing up a batch of muffins or something.

Just trying to keep it "reasonable" enough that it works for me (specifically me).

I do know that people do this sort of thing with some other food allergies (actual allergies that involve the immune system). Those are all IgE type reactions though, so maybe there is some fundamental difference such that it doesn't make sense with an IgG allergen like Gluten. I dunno. I'm no immunologist.

Mostly I posted this to find out if this was already a well discussed topic, or just my own lame idea.

[mushroom]

There are a few of us who eat products produced in facilities that also process wheat products or are even processed on shared lines that are cleaned between runs. There are a few of us who are not obsessive about restaurants (we don't go and inspect the kitchen and watch while our food is prepared ) although we do use proper precautions with our servers. I have eaten successfully in places that do not have gluten free menus by explaining my needs. But I would certainly never pop a crouton (although my hub has been known to eat a product even though I point out to him that it has wheat - he just doesn't buy it again - so I guess he is one of those who feels he can get away with it). I cannot change what he does. And I never knowingly ingest any of the other foods in my intolerance list except for some highly refined cornstarch (because I believe the part of the corn plant - lectins - that I do not tolerate is in the skin and the cornstarch does not bother me), and (now that I have been off soy for a long time) I can tolerate some soy lecithin. But I would not pop a crouton

[TheSword]

I'm a great believer in listening to your body, if your body gets sick or pain, you are putting too much stuff in it that it doesn't like, for some the tiniest amount is too much, for me I don't suffer with small amounts of dairy or gluten.

What I will say is that having been quite unwell for over 10 years, lethargy, indigestion, etc. etc. I now feel great all the time, I feel more energetic at 40 than at 25, so if I feel fine without being strict then that's what I do.

[Jestgar]

I just hate the idea of becoming paranoid about gluten and would like to avoid becoming as sensitive to it as many on this forum apparently have become.

Keep in mind that the people that remain on a forum are the ones most likely to have had major issues. It seems likely that most people don't have these sensitivity problems after going gluten-free.

After 5 or so years, I can tell immediately when I've eaten a tiny bit of gluten (more sensitive), but the effect lasts from a few minutes to a few hours, depending on how much I've eaten. So it's possible that being strictly gluten-free will lessen the effect of accidental cc, not increase it.

[ravenwoodglass]

After 5 or so years, I can tell immediately when I've eaten a tiny bit of gluten (more sensitive), but the effect lasts from a few minutes to a few hours, depending on how much I've eaten. So it's possible that being strictly gluten-free will lessen the effect of accidental cc, not increase it.

I agree but this can take some time so be very strict at first and after you are well healed, and this may take a year or two depending on how ill you were to begin with, you may find you are reacting less violently to cross contamination.

[Jeff In San Diego]

It seems I have found some answers to my question right here on celiac.com

This article about how little it takes to cause damage was quite an eye opener.

I guess I'll skip the whole crouton a day idea and hope for the best on low sensitivity after healing.

thanks celiac.com!