Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Why Is One Crumb Too Much?


azmom3

Recommended Posts

azmom3 Contributor

I've been on this site for about 4-6 hours per day every day for the last 2 weeks and have learned a TON! I am on my 3rd celiac book as well. I understand after hearing it over and over that we need to be meticulous about food preparation, colander, etc so as to not get even 1 gluten crumb into our gluten-free food, but I'm still not sure exactlly why that 1 crumb would make such a huge difference. Are some people more sensitive to it than others or is it doing equal damage to everyone? If the villi heal, what difference does it make....other than maybe feeling lousy? Could 1 crumb really make you have enough damage to be more susceptible to the other related auto-immune disorders or illnesses?

Maybe I had "brain-fog" during my research, but I'm not sure how to explain this one to my husband. He thinks I'm totally exaggerating what needs to be done adn I'm sure my family will think the same thing, so I need a good answer. Any official references to a particular website or book would be especially helpful so I can refer them to this if they doubt me. I am a perfectionist (to a certain degree) and know that I need to be for this but just don't understand how to explain it to others.

Thank you!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator
Jestgar Rising Star

This is an immune response and the immune system works as a cascade. (Think of a pyramid of cards. You knock down the top one and chances are that all the layers underneath will fall as well.) This means that for each molecule of gliadin that you eat, your body responds by alerting 10 or 20 cells and each of these cells send out alarm signals to 10-100 more cells.

Every cell that responds spits out inflammatory cytokines (proteins that cause inflammation) that affect the entire area around the cell.

In the case of Celiac, one of the responding cell types in your intestine turns into a suicidal bomber. It takes out itself and all the cells that connect to it. This is what causes the damage.

A different type of cell produces antibodies that have somehow confused YOUR body's proteins with dangerous attackers. This is what causes the symptoms that we feel.

IMO some people seem more prone to alert the damaging cells and therefor have damage but not the other physical symptoms. Some people seem more prone to alert the antibody cells and therefor have the physical symptoms before they have much intestinal damage.

mle-ii Explorer
I've been on this site for about 4-6 hours per day every day for the last 2 weeks and have learned a TON! I am on my 3rd celiac book as well. I understand after hearing it over and over that we need to be meticulous about food preparation, colander, etc so as to not get even 1 gluten crumb into our gluten-free food, but I'm still not sure exactlly why that 1 crumb would make such a huge difference. Are some people more sensitive to it than others or is it doing equal damage to everyone? If the villi heal, what difference does it make....other than maybe feeling lousy? Could 1 crumb really make you have enough damage to be more susceptible to the other related auto-immune disorders or illnesses?

Maybe I had "brain-fog" during my research, but I'm not sure how to explain this one to my husband. He thinks I'm totally exaggerating what needs to be done adn I'm sure my family will think the same thing, so I need a good answer. Any official references to a particular website or book would be especially helpful so I can refer them to this if they doubt me. I am a perfectionist (to a certain degree) and know that I need to be for this but just don't understand how to explain it to others.

Thank you!

Well think of it this way. Would anyone want to consume 1 crumbs worth of poisen, pathogen, bacteria, virus, etc? The immune system reacts in the same way to 1 crumb of all of these things by trying to fight it off, get rid of it, kill it, etc. When the immune system reacts other systems in the body turn on and off in response. Inflammation is an example of something that gets turned on as well, get even a bit of gluten daily and you have chronic inflammation, which is a bad thing. I'm sure there are other hormones sent around the body in response to this foreign invader, chronically high levels of certain hormones in the body are also a bad thing.

Ask him if it's ok if he puts a random bit of botulism in his food every day. :)

Mike

AndreaB Contributor

I don't have any references, but wanted to tell you my personal experience. I'm one of those that had no obvious symtpoms. I have realized recently though that some knee to ankle pain was probably a symptom. Anyway, since I've gone gluten free I have been glutened twice. Once by cross contamination in a product and once in cleaning out a jar that had gluten stuff in it (barley malt I think). I never once had symptoms that I could associate before going gluten free and now I react to trace amounts.

CarlaB Enthusiast

This is how I think of it ... it doesn't matter how much of the flu I'm exposed to, it causes the same reaction in my body. It seems the same way with gluten. It doesn't seem to matter how much I'm exposed to, I still have the same reaction. A little bit still causes the immune system to go to work.

hez Enthusiast

My very supportive dh had a difficult time getting his head around this as well. However, when he saw how sick I got at a party from only a slight amount of cc he seemed to understand. Hopefully, you will not have to get sick for him to understand. Keep researching and sharing with your dh.

Hez


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Because, in your gut, it's still chemistry. One crumb still causes your immuse system to react, setting off a self-sustaining cascade of reactions that damages your intestines.

Super Bellybutton Rookie

But still, people still react to a less severe degree.

Like in one case a girl in Canada died while kissing her boyfriend's lips after he ate a peanut butter bar. For me, peanuts causes an unsightly, but non-life threatening and non-serious, rash.

I can consume a few peanuts without harm, mostly non processed peanuts, but my body barely reacts to it. So I do think quantity is important and not necessarily like dominoes as some people point out.

penguin Community Regular
But still, people still react to a less severe degree.

Like in one case a girl in Canada died while kissing her boyfriend's lips after he ate a peanut butter bar. For me, peanuts causes an unsightly, but non-life threatening and non-serious, rash.

I can consume a few peanuts without harm, mostly non processed peanuts, but my body barely reacts to it. So I do think quantity is important and not necessarily like dominoes as some people point out.

Let's make sure we're clear on something - celiac disease is NOT an allergy. It's an autoimmune disease like diabetes in which the body attacks itself.

The body recognizes gluten as poison, and creates antibodies to attack the gluten. The body then gets confused and thinks the villi are gluten, and therefore poison, and attacks those cells. It takes 1/48th of a slice of bread (a crumb) to cause damage in a celiac, regardless of symptoms. Not everyone is symptomatic.

Tiffany is right, it is a self sustaining reaction. The crumb hits the duodenum, and that's where the rection first occurs, and then the crumb continues to travel down the 22 ft. of small intestine on it's way out the body, still causing reactions throughout the intestine. It's a hyperactive immune system thing, not an allergy. The antibodies cause by an allergy (IgE) are completely different from the antibodies created by an autoimmune disease (in this case IgA, IgE, and TtG).

The amount is irrelevant, the reaction occurs just the same.

tarnalberry Community Regular
But still, people still react to a less severe degree.

Like in one case a girl in Canada died while kissing her boyfriend's lips after he ate a peanut butter bar. For me, peanuts causes an unsightly, but non-life threatening and non-serious, rash.

I can consume a few peanuts without harm, mostly non processed peanuts, but my body barely reacts to it. So I do think quantity is important and not necessarily like dominoes as some people point out.

External symptoms do not - as determined by numerous studies - correlate well with actual damage done internally. Trying to make the comparison on that grounds is fallacious.

Additionally, the celiac reaction cannot be compared to an allergy because it is not the same immune reaction. Allergies, like peanut allergies, are IgE mediated, whereas celiac disease is an IgG and IgA mediated immune response. Anaphylactic responses vary in severity as different bodies produce different levels of chemicals in reaction and can handle different levels of those chemicals in response. The celiac disease process is fundamentally a different chemical process.

As I noted, one the gluten molecule is "used" in the reaction, the body then has all the reagents it needs to create it's own sustained reaction.

gfp Enthusiast
This is an immune response and the immune system works as a cascade. (Think of a pyramid of cards. You knock down the top one and chances are that all the layers underneath will fall as well.) This means that for each molecule of gliadin that you eat, your body responds by alerting 10 or 20 cells and each of these cells send out alarm signals to 10-100 more cells.

Every cell that responds spits out inflammatory cytokines (proteins that cause inflammation) that affect the entire area around the cell.

In the case of Celiac, one of the responding cell types in your intestine turns into a suicidal bomber. It takes out itself and all the cells that connect to it. This is what causes the damage.

A different type of cell produces antibodies that have somehow confused YOUR body's proteins with dangerous attackers. This is what causes the symptoms that we feel.

IMO some people seem more prone to alert the damaging cells and therefor have damage but not the other physical symptoms. Some people seem more prone to alert the antibody cells and therefor have the physical symptoms before they have much intestinal damage.

I was going to respond then this covers it pretty much 100% ....

However I also have another question ....

When 1 crumb is already too much would eating a whole loaf/pizza make any difference? other than perhaps the half-life of getting rid of the gluten ? This is particualr with respect to people who get small regualr glutening vs say making a big mistake 2-3 times a year...

My personal opinion is the long term damage from small amounts is very much more harmful, especially in terms of forced cell replication than a short term large glutening.

2kids4me Contributor

One crumb is too much for the reasons everyone has stated, I am adding experience from my children.These experiences also convinced my DH who although he knew what celiac was etc., thought I was going overboard about cc........until....

my daughter who is the most sensitive in terms of showing outward symptoms

- became ill after playing in am empty grain bin, he couldnt believe how just inhaling the dust made her ill

- her class used paper mache to make masks and she broke out in darkened blotches wherever she had come in contact with the flour, the migraine hit by 3 pm

After two episodes (men, sigh...well at least this man needs to see it to believe it more than once) - he supported my efforts 100% and he is meticulous as well. We eat all main meals 100% gluten-free. We have a seperate toaster for when he wants gluten toast.

One crumb makes a difference and one crumb can send you to bed or make you feel crappy for the day or perhaps two. The damage to your villi occurs whether or not you show outward symptoms.

mle-ii Explorer
Tiffany is right, it is a self sustaining reaction. The crumb hits the duodenum, and that's where the rection first occurs, and then the crumb continues to travel down the 22 ft. of small intestine on it's way out the body, still causing reactions throughout the intestine. It's a hyperactive immune system thing, not an allergy. The antibodies cause by an allergy (IgE) are completely different from the antibodies created by an autoimmune disease (in this case IgA, IgE, and TtG).

The amount is irrelevant, the reaction occurs just the same.

That point in bold above is a very interesting point that had crossed my mind once, but now it makes absolute sense. Since the immune system is attacking and trying to kill something that it will never kill, it will continue until the gluten is through the system.

I'm curious, do the same antibodies occur throughout the entire digestive system? I imagine that they are throughout the intestine, but are they also in the colon/rectum? Might help explain my colitis.

Thanks,

Mike

mle-ii Explorer
That point in bold above is a very interesting point that had crossed my mind once, but now it makes absolute sense. Since the immune system is attacking and trying to kill something that it will never kill, it will continue until the gluten is through the system.

I'm curious, do the same antibodies occur throughout the entire digestive system? I imagine that they are throughout the intestine, but are they also in the colon/rectum? Might help explain my colitis.

Thanks,

Mike

Hey, guess what I get to answer my own question...

Open Original Shared Link

It appears that the rectal tissue can be affected by gluten, at least I think this is what it's saying:

Gastroenterology. 1989 Jul;97(1):29-37.

Studies of intestinal lymphoid tissue. XII. Epithelial lymphocyte and mucosal responses to rectal gluten challenge in celiac sprue.

Loft DE, Marsh MN, Sandle GI, Crowe PT, Garner V, Gordon D, Baker R.

Department of Medicine, University of Manchester School of Medicine, United Kingdom.

The immunopathologic, structural, and functional changes within rectal mucosa of known celiac sprue subjects were quantitated during local challenge with a peptic-tryptic digest of gluten. In the celiac sprue patients challenged with 2 g of digest, major effects occurred in lamina propria, submucosa, and local microvasculature. The lamina propria swelling was biphasic, starting 1-2 h after challenge with widespread extravascular deposition of fibrinogen, indicative of increased microvascular permeability, receding by 24 h postchallenge. A rapid fall in mast cells together with granule discharge suggested their involvement in this response. The late-phase swelling (48-72 h) was preceded by a rapid influx of neutrophils and basophils, the latter showing evidence of degranulation beyond 72 h. Reestablishment of vessel lumina, a rise in mast cells, and loss of neutrophils indicated tapering of the inflammatory cellular cascade by 96 h. Lymphocytes, first seen to enter the lamina by 2 h postchallenge, increased progressively, thereby resulting in substantial infiltration between 36 and 96 h. A marked rise in epithelial lymphocytes, maximal at 6-8 h, waned by 24 h. Volumes of surface and crypt epithelium remained constant throughout. In another challenge series with 4 g of gluten digest, electrical potential difference across rectal mucosa decreased significantly 12 h postchallenge, but the associated decreases in net sodium and chloride absorptive fluxes were insignificant. It is concluded that rectal mucosa is sensitized to gluten in celiac sprue disease and thus offers a promising and convenient in vivo substrate for investigative and diagnostic purposes.

What is also interesting is to not the time frames. Given that it takes some time to get to the rectum via the GI and given the times until reaction and reactions are over, no wonder it's so difficult to pinpoint where gluten is getting in.

Given this information I'm guessing that the colon can react to gluten as well.

What are the transit times for foods in the GI I wonder? :)

Mike

mle-ii Explorer

And here's some info I've found in a quick search, no wonder I've got proctitis. Given the transit time (estimated/average) the gluten I might ingest and react to is in the colon (30-40 hours) a long time. Here's some info:

it is difficult to state with any precision how long ingesta remains in the stomach, small intestine and large intestine. Nonetheless, there have been many studies on GI transit, and the table below presents rough estimates for transit times in healthy humans following ingestion of a standard meal (i.e. solid, mixed foods).

50% of stomach contents emptied 2.5 to 3 hours

Total emptying of the stomach 4 to 5 hours

50% emptying of the small intestine 2.5 to 3 hours

Transit through the colon 30 to 40 hours

Remember that these are estimtes of average transit times, and there is a great deal of variability among individuals and in the small person at different times and after different meals.

Open Original Shared Link

sspitzer5 Apprentice

Speaking of transit times, a nutritionist told me to swallow some whole kernel corn and then watch for it on the other end (if ya know what I mean). That gives you a good idea of how long it takes to digest that meal.

However, the reaction caused by the gluten seems to go on for much longer than it takes to eliminate the meal. I usually feel sick for 3 or 4 days.

tarnalberry Community Regular
Speaking of transit times, a nutritionist told me to swallow some whole kernel corn and then watch for it on the other end (if ya know what I mean). That gives you a good idea of how long it takes to digest that meal.

However, the reaction caused by the gluten seems to go on for much longer than it takes to eliminate the meal. I usually feel sick for 3 or 4 days.

That's because it's a self-sustaining action. Once the gluten starts the chemical cascade, it's no longer required to keep the chemistry going. The process feeds itself, without the presence of gluten, for as long as two weeks (it varies by person), according to what I've read. It's not the gluten, directly, that makes us sick, but how our body reacts to it. Our body is making us sick - and even a number of days after eating gluten, our body is continuing to attack itself because the gluten started it along that path.

LKelly8 Rookie
Like in one case a girl in Canada died while kissing her boyfriend's lips after he ate a peanut butter bar.

Just for the record. . .Open Original Shared Link

I can't remember if they ever released the actual cause of death.

Nancym Enthusiast

Just heard a lecture by Dr. Fine and he explained it really well, had charts and stuff showing measurements of antibodies from people who were following the diet very, very closely and those not so closely. Even though you might not have physical symptoms, your body is still reacting to the gluten in your intestines and possibly throughout your body. In the end, it all adds up over the years to a cummulative effect that could potentially lead to more cancer and autoimmune diseases.

I think Dr. Fine is traveling all over talking to Celiac groups, if you get a chance to see him, go!

Super Bellybutton Rookie
Let's make sure we're clear on something - celiac disease is NOT an allergy. It's an autoimmune disease like diabetes in which the body attacks itself.

The body recognizes gluten as poison, and creates antibodies to attack the gluten. The body then gets confused and thinks the villi are gluten, and therefore poison, and attacks those cells. It takes 1/48th of a slice of bread (a crumb) to cause damage in a celiac, regardless of symptoms. Not everyone is symptomatic.

Tiffany is right, it is a self sustaining reaction. The crumb hits the duodenum, and that's where the rection first occurs, and then the crumb continues to travel down the 22 ft. of small intestine on it's way out the body, still causing reactions throughout the intestine. It's a hyperactive immune system thing, not an allergy. The antibodies cause by an allergy (IgE) are completely different from the antibodies created by an autoimmune disease (in this case IgA, IgE, and TtG).

The amount is irrelevant, the reaction occurs just the same.

Note that an allergy itself is an autoimmune condition, just like celiac and just like you said not everyone gets the same symptoms...just like an allergy. Though note that I never said celiac is an allergy, but making a close analogy.

The lowest amount of consumption shown to cause damage is 100mg a day. But this study showed that 4 of the 10 had elevated IgA...showing that not everyone reacts the same to the same amount.

Rusla Enthusiast

A crumb for me, even a minute one which is hardly visable causes me a great deal of grief. I break out immediately iin DH and I am sick for a week. Take a person with a nut

allergy a kiss can kill some. So, this is the same, a kiss can make me sick for a week or more.

If it makes it easier to explain to your husband, tell him it is like a severe allergy, like a nut or seafood one. It is every bit as dangerous except with us it can be a slow painful death of cancers and lack of nutrition.

Lisa Mentor
A crumb for me, even a minute one which is hardly visable causes me a great deal of grief. I break out immediately iin DH and I am sick for a week. Take a person with a nut

allergy a kiss can kill some. So, this is the same, a kiss can make me sick for a week or more.

If it makes it easier to explain to your husband, tell him it is like a severe allergy, like a nut or seafood one. It is every bit as dangerous except with us it can be a slow painful death of cancers and lack of nutrition.

Rusla:

Welcome back!! :) . I owe you one and the gods of nature.....well done and thanks. We had BEAUTIFUL day for Annie's wedding. Thank you.

It does seem to me that the longer that I go gluten free, the most distinct I can feel the reation to being glutened. It is now very clear, now that there has been some healing.

New avitar, (thank the the Canadian Godess) , but same old me............Lisa

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.