How Much Gluten Is Too Much?

[violentlyserene]

How do you all conclude what is an acceptable level of gluten for someone with celiac? I know the celiac foundation says the only treatment is a lifetime of gluten free but that's quite vague (especially for someone who needs very specific precise details to function). I've seen various sources saying that eating gluten with celiac causes all sorts of long term risks but I don't know how much gluten would be required to cause that.

I

[GlutenDude]

Stop eating all gluten immediately. Even if you have no reaction, you are doing damage to your intestines, which can lead to some really nasty stuff down the road. Even if you have what your doc calls "mild celiac", celiac is celiac and there is no cure.

And your doctor said you can have gluten sometimes?? Ugh. Please find another doctor. Your life may depend on it.

[violentlyserene]

Stop eating all gluten immediately. Even if you have no reaction, you are doing damage to your intestines, which can lead to some really nasty stuff down the road. Even if you have what your doc calls "mild celiac", celiac is celiac and there is no cure.

And your doctor said you can have gluten sometimes?? Ugh. Please find another doctor. Your life may depend on it.

This is precisely why I'm trying to sort out what an acceptable level of contamination is. The cookies were very purposeful to see what my reaction was and see if I was actually going to have a reaction. That was a one time thing only. I don't purposefully eat gluten, ever. I'd go with the proposed US guidelines of 20ppm if I had a clue what that meant in terms of my kitchen. I don't know how much gluten might be on a spoon washed with my husband's gluten dishes. It's not much certainly but if I get that trace amount 20 times a day, will that add up to going over the safe threshold, whatever that threshhold is?

The gi dr was nice and helpful in that he got me the biospy and diagnosis with no problem at all but I'm quite suspicious of his opinion. He's not my regular dr though.

[GlutenDude]

Again, physical reaction does not equal bodily damage. There is no acceptable amount of gluten if you have celiac. I know it's hard to hear this. It took me a long time to accept it. But please do not fall to temptation. It's not worth it.

[violentlyserene]

Again, physical reaction does not equal bodily damage. There is no acceptable amount of gluten if you have celiac. I know it's hard to hear this. It took me a long time to accept it. But please do not fall to temptation. It's not worth it.

My apologies for not being very clear on this. I feel like I'm asking something completely different than others are reading and that is I'm sure totally my fault.

I'm not tempted by gluten on a realistic level. Even the minor reaction I had to cookies isn't worth and the long term effects definitely aren't. I want to be gluten-free and stay that way. However, to do that and keep my sanity I need to know how much contamination it takes to reach the proposed federal guidelines. I need specific hard lines and no gluten isn't specific as there is an acceptable level of gluten in foods that are certified gluten free. I'm trying to find out what it takes in a home kitchen to reach those minute levels so my husband I and can set rules that I'm not constantly changing.

[suziq0805]

As I understand it (and someone please correct me if I'm wrong), no gluten means just that...no gluten. The 20 parts per million is a level that someone (Europe??) came up with as a number that most celiacs will not react to. Some super sensitive celiac may react to gluten free products if there is gluten in there but just falls under the 20 parts per million. Whether damage is occurring at or under 20 parts per million, I'm not sure on that.

[Bubba's Mom]

That "acceptable" 20ppm is a tricky thing. Does anybody really know what that amount would look like? I don't.

If using a cutting board or scratched cookware or colander that was previously used for gluten AND has been washed can have enough gluten to dose us..it makes it pretty clear that we have to be VERY careful?

We wash our rinsed dishes in a shared dish washer here, but have seperate can openers, toasters, cutting boards. My cast iron cookware is off-limits to gluten. I place a clean plastic place mat on the counter for a clean work surface when preparing food. I don't know if someone was there before me with their sandwhich laying there.

Basically, I treat gluten as if it is rat poison. NO amount is OK.

If your Dr. said a small amount is ok because you are a "little Celiac" he's crazy! NONE is safe. A "little Celiac" is like a being little pregnant. Please find a better informed Dr.

[violentlyserene]

That "acceptable" 20ppm is a tricky thing. Does anybody really know what that amount would look like? I don't.

If using a cutting board or scratched cookware or colander that was previously used for gluten AND has been washed can have enough gluten to dose us..it makes it pretty clear that we have to be VERY careful?

We wash our rinsed dishes in a shared dish washer here, but have seperate can openers, toasters, cutting boards. My cast iron cookware is off-limits to gluten. I place a clean plastic place mat on the counter for a clean work surface when preparing food. I don't know if someone was there before me with their sandwhich laying there.

Basically, I treat gluten as if it is rat poison. NO amount is OK.

If your Dr. said a small amount is ok because you are a "little Celiac" he's crazy! NONE is safe. A "little Celiac" is like a being little pregnant. Please find a better informed Dr.

I've done a lot more reading and I think I've finally gotten somewhere. The "what does it look like" issue was surprisingly hard to find. I found one article that took a piece of bread as an example. It has something like times the level of acceptable gluten so based on that, even a crumb is too much. When you take into consideration all the possible places for gluten to be, even under 20 ppm, I think that even the microscopic amount on the spoon in my first post is too much to accept on a daily basis. It's probably under on it's own but that's just one thing out of 100 factors that affect how much gluten gets into my system.

[saintmaybe]

I've done a lot more reading and I think I've finally gotten somewhere. The "what does it look like" issue was surprisingly hard to find. I found one article that took a piece of bread as an example. It has something like times the level of acceptable gluten so based on that, even a crumb is too much. When you take into consideration all the possible places for gluten to be, even under 20 ppm, I think that even the microscopic amount on the spoon in my first post is too much to accept on a daily basis. It's probably under on it's own but that's just one thing out of 100 factors that affect how much gluten gets into my system.

I just hope you're not going to throw the baby out with the bathwater. You look at that spoon and think well, there might be 20ppm gluten on there, sod all, I'm just going to go for the whole shebang and eat that cookie.

Don't do that. We do our very, very best to limit our gluten exposure, WITHOUT making ourselves crazy over it. Do get separate dishes. Do keep clean cooking areas. Do keep separate cooking implements if you run a mixed house.

Look- we have to live safely and healthily while we're here, and that means eating no gluten. But we have to LIVE. Establish ground rules that you and your husband can live by, and yes, be a little OCD about it. But the fact is- we live in a wheat world, and that isn't going to change in our lifetimes. You're going to get dosed sometimes, despite your best care, so you should know that up front.

If you're very concerned, limit exposure to gluten free replacement foods (which you should do anyway, as most are highly processed and unhealthy). Also, considering asking your husband going gluten free with you at home. That way you have a wheat free space in this wheat overrun world.

[Roda]

I still have a shared kitchen, but in the last year it is even more gluten free since my youngest son was diagnosed last year and this year the oldest son is doing a gluen free trial.

When I initially was diagnosed I went through my kitchen and separated out all of the gluten items in the pantry. Things I couldn't eat and the rest of the family could went on the top shelf. Things that I knew we wouldn't use I donated to the local food bank. I got rid of all flour in the house and refused to let it in the door. All baking was done gluten free for the entire house. If the rest of the family wanted something I couldn't make they went to the bakery. I scrubbed down the whole kitchen and fridge and dedicated one small area for just the gluten eaters on the counter and a drawer in the fridge. The rest of the kitchen was gluten free only. I separated any cookware ect. that I didn't feel was safe and either got rid of it or the hubby uses it for things he wants. I bought new bakeware and utensils(mine was old anyway), cutting boards, pasta strainer, griddle, crock pot(mine was old and scratched), toaster, and waffle iron. I replaced all baking items, herbs and spices that may have been cross contaminated(double dipping thing etc.). Any condiments that were contaminated I let the others finish up then bought new to share with precautions taken to prevent cc. My kids were not allowed to walk around and eat gluten things just where ever they wanted. They had to sit at the table and wash after they were done. I cooked all of our shared meals gluten free. After our youngest son was diagnosed we pretty much had the same rules, but reinforced him that stuff on that top shelf and the drawer in the fridge were off limits. My husband began eating less "treats" at home to make it easier for him. Now that our oldest son is gluten free my husband is the only gluten eater left in the house. The only gluten things left in the house are my husbands cereal, bread, crackers and occasional treat. He even quit cooking regular pasta for himself because he said it was a pain to cook both and it was just easier to eat what everyone else was eating. We do share eating utensils, plates and cups. I wash what I can in the dishwasher. We do have separate dish rags/sponges for items we have to wash by hand, but that is not very often. Everyone in the house in very conscious and washes hands before meal prep and eating. I try not to obcess to bad, and don't have to when it is just the four of us. I do get hyperviligent when I have company staying with me though.

[violentlyserene]

I just hope you're not going to throw the baby out with the bathwater. You look at that spoon and think well, there might be 20ppm gluten on there, sod all, I'm just going to go for the whole shebang and eat that cookie.

Don't do that. We do our very, very best to limit our gluten exposure, WITHOUT making ourselves crazy over it. Do get separate dishes. Do keep clean cooking areas. Do keep separate cooking implements if you run a mixed house.

Look- we have to live safely and healthily while we're here, and that means eating no gluten. But we have to LIVE. Establish ground rules that you and your husband can live by, and yes, be a little OCD about it. But the fact is- we live in a wheat world, and that isn't going to change in our lifetimes. You're going to get dosed sometimes, despite your best care, so you should know that up front.

If you're very concerned, limit exposure to gluten free replacement foods (which you should do anyway, as most are highly processed and unhealthy). Also, considering asking your husband going gluten free with you at home. That way you have a wheat free space in this wheat overrun world.

No worries here about just giving up. While I have weekly occurrences of desperately wanting something and sometimes I swear gluten foods talk to me, I don't give in. The cookies I ate was a very purposeful choice for the sake of my future sanity. I now know that I do have an unpleasant reaction and that helps a lot in continuing to resist eating gluten particularly since I already get daily headaches. Giving myself one on purpose does not even begin to compute. I can't say I'm thrilled with the results of my research today but I got what I need to set guidelines that will keep me safe.

[T.H.]

Okay, short answer? No one actually knows how much gluten is too much. All the studies done so far tend to be small, they don't always agree with each other's results, and they have a few flaws here and there, so...we don't know. Which completely sucks, yeah?

My husband, who also likes precise answers, is always annoyed as heck by the fact that I have a disease that hasn't been completely studied yet.

However, as a more precise guideline that might be of help? A recent study was done at the Mayo clinic (A Prospective Double-Blind Placebo-Controlled Trial to Establish a Safe Threshold for Patients with celiac disease. It can be found at www.celiaccenter.org, in their publications section.) and it was fairly well done. In it, they found that all but one of their patients who consumed 10 mg of gluten daily were okay, without villi damage or antibody levels raised.

Those who consumed 50 mg a day showed measurable villi blunting.

So the safe level for all but one of that group lay somewhere between 10-50mg daily.

The one who wasn't safe would likely fall into the 'super-sensitive' category, and he had a complete relapse on 10 mg a day. He also dropped out due to this, and so his results don't make it into the study's conclusions. But he had symptoms to match, so if one were to eat 10 mg a day and felt fine, I would imagine they are likely NOT super sensitive and that's a safe amount.

If you wish to calculate this out with your gluten-free food, here's how:

1. Calculate out the grams eaten (usually the nutrition facts will list how many grams per serving, and how big the serving is, like 2 waffles, for example).

2. Convert this into kg.

3. Find out the concentration of gluten for the product (ppm). You may have to call up the company to get this. Thankfully for us, ppm is equal to mg/kg, so 20 ppm is 20 mg of gluten for every 1 kg of product.

4. And now, multiply the ppm by the kg eaten, and you have figured out how many mg of gluten you consumed. :-)

This is going to give you the maximum possible amount of gluten you are ingesting. It is likely higher than the ACTUAL amount of gluten, as most companies strive to get their products to have lower gluten cc than the maximum allowed, just to be on the safe side. However, I figure in this case, we celiacs probably want to be on the safe side too, and err on the side that is less likely to have us staying sick, you know?

...kind of annoying that they give us concentration rather than the much more useful actual amount of gluten, isn't it? :-/

Good luck!

[violentlyserene]

Okay, short answer? No one actually knows how much gluten is too much. All the studies done so far tend to be small, they don't always agree with each other's results, and they have a few flaws here and there, so...we don't know. Which completely sucks, yeah?

My husband, who also likes precise answers, is always annoyed as heck by the fact that I have a disease that hasn't been completely studied yet.

However, as a more precise guideline that might be of help? A recent study was done at the Mayo clinic (A Prospective Double-Blind Placebo-Controlled Trial to Establish a Safe Threshold for Patients with celiac disease. It can be found at www.celiaccenter.org, in their publications section.) and it was fairly well done. In it, they found that all but one of their patients who consumed 10 mg of gluten daily were okay, without villi damage or antibody levels raised.

Those who consumed 50 mg a day showed measurable villi blunting.

So the safe level for all but one of that group lay somewhere between 10-50mg daily.

The one who wasn't safe would likely fall into the 'super-sensitive' category, and he had a complete relapse on 10 mg a day. He also dropped out due to this, and so his results don't make it into the study's conclusions. But he had symptoms to match, so if one were to eat 10 mg a day and felt fine, I would imagine they are likely NOT super sensitive and that's a safe amount.

If you wish to calculate this out with your gluten-free food, here's how:

1. Calculate out the grams eaten (usually the nutrition facts will list how many grams per serving, and how big the serving is, like 2 waffles, for example).

2. Convert this into kg.

3. Find out the concentration of gluten for the product (ppm). You may have to call up the company to get this. Thankfully for us, ppm is equal to mg/kg, so 20 ppm is 20 mg of gluten for every 1 kg of product.

4. And now, multiply the ppm by the kg eaten, and you have figured out how many mg of gluten you consumed. :-)

This is going to give you the maximum possible amount of gluten you are ingesting. It is likely higher than the ACTUAL amount of gluten, as most companies strive to get their products to have lower gluten cc than the maximum allowed, just to be on the safe side. However, I figure in this case, we celiacs probably want to be on the safe side too, and err on the side that is less likely to have us staying sick, you know?

...kind of annoying that they give us concentration rather than the much more useful actual amount of gluten, isn't it? :-/

Good luck!

Thank you for understanding. I fear I came off as a bit of a lunatic in my desperation to get somewhere but I do understand that there is no real answer. The study you mention is one of the ones I've looked at over and over. The best thing I found yesterday was a blog article somewhere that does the math and essentially, it breaks down into showing that even a crumb per serving is too much gluten. The math is a bit beyond my complete understanding but it's enough to function I suppose. Unfortunately I don't currently get symptoms at trace levels. The idea that I'll have to treat myself as super sensitive because of this is slowing getting through. It seems that I sound like I was tempting by eating gluten but really, it's the inconvenience of avoiding cross contamination that gets me. I can avoid blatant gluten with relative ease. Remembering to wash my hands every single time I get up to eat is not easy. I'm a grazer with untreated adhd (and 3 pets who eat wheat treats). The number of times I touch something gluteny while making and eating food numbers into the hundreds every single day.

I barely remember to not just open the cheese bag after i give the dog's a treat, much less anything else. My life operates on an unconcious level and changing that, even for something as important as my health, is staggeringly difficult. I'm rambling now so I'll shut up.

Anyway, thank you for your post. It's good to hear that the vagueness of all this irritates someone else. It's not going to change for a long time, if ever, so I'll commiseration whenever I can get it.

[kareng]

I barely remember to not just open the cheese bag after i give the dog's a treat, much less anything else. My life operates on an unconcious level and changing that, even for something as important as my health, is staggeringly difficult. I'm rambling now so I'll shut up.

First, it does take a few months to lose the old habits, like licking a PB knife after making a gluteny PB sandwich for someone.

I give my dog Rice Chex for treats. they make good training treats. Low calorie & dogs love them. We dog sit several dogs & they all get excited when I get out the Rice Chex.

[irish daveyboy]

How do you all conclude what is an acceptable level of gluten for someone with celiac? I know the celiac foundation says the only treatment is a lifetime of gluten free but that's quite vague (especially for someone who needs very specific precise details to function). I've seen various sources saying that eating gluten with celiac causes all sorts of long term risks but I don't know how much gluten would be required to cause that.

I

[irish daveyboy]

That "acceptable" 20ppm is a tricky thing. Does anybody really know what that amount would look like? I don't.

Gluten Free < 20PPM, but how small is that!

Here is a Visualisation of what 20 parts of 1 million parts looks like !!!

.

This is 1 Million dots (you need to scroll right to reach 1 million)

.

Each of the small squares =100 dots (20 = 1/5th of the small square)

Each of the large squares =10,000 dots.

.

This Visual can be interpreted 2 ways.

.

1. How incredibly small the actual amount is.

and Cheating of ANY KIND puts you way in the DANGER ZONE

.

ALSO

.

2. Imagine the 1 million dots as a Large slice of gluten-free Toast,

and 1 small square (100 dots) as the crumb contamination of a shared toaster (Kinda puts it all in perspective)

This is Mind Boggling Stuff.

Open Original Shared Link

[violentlyserene]

This might give you an idea. Open Original Shared Link

Wow. Thank you, that's exactly what I needed to hear. 6mgs seems like a lot still to me when the only gluten is in terms of contamination that is on microscopic levels. It's starting to sink in at least.

[Bubba's Mom]

I think there's a typo in that link? At one place it says 200ppm, rather than 20ppm. Even with that in mind the poster is saying the amount would be similar in size to 1/4 a grain of rice. That's for the entire day!

If small amounts are consumed several times a day from various gluten-free replacement foods, it's easy to see that most of us are going to have a problem if we eat "gluten-free" versions of produced foods, especially every day.

[psawyer]

I think there's a typo in that link? At one place it says 200ppm, rather than 20ppm.

The poster is in Ireland. That is NOT a typo--in Europe some foods with as much as 200 ppm can legally be labeled gluten-free.

[irish daveyboy]

The poster is in Ireland. That is NOT a typo--in Europe some foods with as much as 200 ppm can legally be labeled gluten-free.

Thanks Peter,

That's an old link when Gluten Free was allowed up to 200PPM.

But in January 2012 a new World agreed standard of 20PPM comes into effect, even Australia have accepted the Global standard of 20PPM

even though they themselves work to a standard of 6PPM.

This Global standard won't change Australia's 6PPM standard.

David

[melikamaui]

I think there's a typo in that link? At one place it says 200ppm, rather than 20ppm. Even with that in mind the poster is saying the amount would be similar in size to 1/4 a grain of rice. That's for the entire day!

If small amounts are consumed several times a day from various gluten-free replacement foods, it's easy to see that most of us are going to have a problem if we eat "gluten-free" versions of produced foods, especially every day.

I just took a piece of rice out to demonstrate exactly that to my kids. We noticed how incredibly small 1/4 piece of rice is and then talked about how we should never eat more than one "gluten-free" processed product in a day.

[irish daveyboy]

I came across this article, which I think helps to explain the situation.

Open Original Shared Link

[domesticactivist]

Our family decided to take a very conservative approach. I do not trust the 20 ppm guideline for reasons many people have posted on this forum. We do our beat to avoid all potential sources of cross contamination. I realize that sometimes we may fail, but at least we have minimized our risk. I have a blog post about going 100 % gluten free on the blog linked from my profile. It even includes step by step cleaning instructions. It might appeal to your sense of clarity and order

[violentlyserene]

Our family decided to take a very conservative approach. I do not trust the 20 ppm guideline for reasons many people have posted on this forum. We do our beat to avoid all potential sources of cross contamination. I realize that sometimes we may fail, but at least we have minimized our risk. I have a blog post about going 100 % gluten free on the blog linked from my profile. It even includes step by step cleaning instructions. It might appeal to your sense of clarity and order

It does indeed! I'll go look it up.

Celiac is so much more serious than I ever realized. If I hadn't gone looking for specifics, I'd have never known that eating gluten would put me at risk for so much or how much contamination really matters, esp with a gi dr that doesn't seem to understand the implications of celiac. Even trying to be careful, albeit with an inaccurate definition, I'm sure I've been over that 20 ppm every day for the last 2 months.

[psawyer]

I came across this article, which I think helps to explain the situation.

Open Original Shared Link

Thanks, Davey. That should be required reading for everyone, especially the comments by Nanna Mossberg.