Why Is It All Or Nothing? Why Must It Be "zero Tolerance?"

[MrsJohnnyG]

I am asking this seriously, not flippantly... I truly want to know. It seems that even ONE tiny inadvertent bit of gluten, not even one communion wafer at church, or even food served with a spoon that touched bread, is unacceptable when you have celiac disease.

Why is this? Is there no benefit at all to severely cutting out 99% of the gluten in one's diet? What happens to a celiac when you consume something with a small amount of gluten... does it completely undo the healing you've done while you were gluten-free?

I am starting to suspect I am gluten-intolerant, even though as I posted last week, I have none of the classic GI symptoms. (Never had ANY digestive problems at all, really.)

BUT... I am fighting with my insurance company to be tested for it, hopefully by next week, and in the meantime, I have upped my gluten intake so that the test will be accurate. I never eat bread, but I've had two slices of whole-wheat bread every day this week (yeckkkk, I can't STAND it) plus whole-grain Goldfish (double yeckkk -- although I'm becoming addicted to those nasty things).

Suddenly, I have all these sinus problems cropping up! My throat itches, I have phlegm, my nose is running. This has got to be gluten-related... right??

So, I am thinking I do probably have it after all. Maybe the whole reason I haven't had symptoms is that I just never really ate bread in my day-to-day diet.

So if I find out that I do have celiac, won't I benefit just by going back to my mainly-gluten-free diet? or do I really need to make this switch to the zero-tolerance, "even cross-contamination will make you sick" version of gluten-free?

Thank you in advance for any replies or links to FAQ's about this that I have missed. I am brand-new to this world and am still finding my way in the dark.

[Fiddle-Faddle]

First of all, welcome!

Secondly, I am curious why you think you have gluten issues in the first place, besides for the nasal issues, which you say started after you went back on gluten? What symptoms did you have that steered you towards the idea of celiac? (And two slices of whole wheat bread might not be enough in such a short amount of time to trigger enough production of antigliadin antibodies--I think they say 4 slices a day for 3-4 months, and whole wheat bread tends to have less gluten than white bread.)

And to answer your question, the answer is because studies show that as little as 1/16 of a piece of bread can cause measurable damage to a celiac's intestines, even without feeling any symptoms. And that measurable damage opens the floodgates to a whole slew of serious problems, such as lupus, fibromyalgia, DH, and lymphoma--all gluten-induced.

I'm one who has very mild intestinal reactions to gluten--but I know enough people with lupus and fibromyalgia (two really debilitating diseases), and I know enough of their personal stories of how they got there (autoimmune thyroid disease, reflux, rashes, increasingly worsening intestinal difficulties) to be thoroughly scared that I will end up the same way. Or that my children--who have rashes, tummy aches, and diarrhea/constipation reactions to gluten--will, which is an even more unbearable idea.

I also lost a friend to B-cell lymphoma, which is associated with celiac--but nobody ever tested him for it, though they did test him for wheat allergy.

Remember, it takes an average of 11 years in this country to get correctly diagnosed. An awful lot of damage can be done to your body in 11 years, and it's likely that those 11 years were AFTER the typical patient felt bad enough to start going to doctors to look for answers. (Not that they got any for 11 years )

So we are gluten free, and don't miss it one bit.

(Now, the convenience, I miss! But not the foods. Really!)

[MrsJohnnyG]

Thank you for such a quick reply!!

Secondly, I am curious why you think you have gluten issues in the first place, besides for th

I truly didn't, at first. My husband and I have recently had our FOURTH miscarriage in the last 2.5 years (no living children yet). We have been tested for everything under the sun. We are desperate for answers.

Three people within a couple of weeks of each other asked me, "Have you been tested for celiac disease?" I researched it and had none of the classic GI symptoms... although I've had 1) depression, 2) lethargy, 3) multiple miscarriages... all of which I understand can be symptoms.

Needless to say, I want to leave no stone unturned. (And all the crazy sinus symptoms that have popped up, now that I'm consuming a lot of gluten, also has me suspicious!)

Thank you so much for explaining that so well. So even one instance of cross-contamination can cause this damage? or is it a cumulative effect so you don't want "a smidge here and a smidge there" because it all adds up?

Thank you again!!!

[MrsJohnnyG]

Oops, I had missed this part:

What symptoms did you have that steered you towards the idea of celiac? (And two slices of whole wheat bread might not be enough in such a short amount of time to trigger enough production of antigliadin antibodies--I think they say 4 slices a day for 3-4 months, and whole wheat bread tends to have less gluten than white bread.)

That is good to know. I do eat pasta from time to time, mostly whole-grain and/or made of vegetables (like spinach linquine), but almost never any bread... hmm, now I'm confused and am DEFINITELY eager to see what my bloodwork says.

[Fiddle-Faddle]

I'm so sorry about the miscarriages. I only had one, and it was devastating.

Even if your bloodwork turns out negative, you might just try the gluten-free diet and see if things improve for you. The nasal allergies does have a relationship to gluten--most people here have reported that their allergy symptoms improved or disappeared after going gluten-free.

Wild, huh?

[MrsJohnnyG]

Even if your bloodwork turns out negative, you might just try the gluten-free diet and see if things improve for you. The nasal allergies does have a relationship to gluten--most people here have reported that their allergy symptoms improved or disappeared after going gluten-free.

Wild, huh?

Yes, after I realized how much phlegm I've been having, I had a lightbulb moment and went Googling to see if gluten intolerance is related to allergies/sinuses... plenty of links showed up!! I then told my husband HE needs to try a gluten-free diet... he's had GI problems AND sinus/allergies for most of his life!! (of course, I can't even get him to give up dairy, let alone wheat!!)

[Fiddle-Faddle]

Wheat is easy.

Make gluten-free bread (recipe to follow ). It tastes way better than Wonder bread.

Make rice pasta instead of wheat (you don't even have to tell him, nobody can tell the difference).

*****************************************************************

Make pizza from scratch using corn tortillas for crusts.

Heat over high heat on each side for 2 minutes, until slightly blistered. While they are heating, dump a can of El Cheapo tomato sauce into a bowl. Stir in a teaspoon of sugar, as much garlic powder as you like, and torn fresh basil.

Move tortillas onto a baking sheet sprayed with PAM. Top with sauce and shredded mozzarella or sliced provolone (which comes in convenient round slices just the right size for corn tortillas).

Put tortillas under the broiler for 2-4 minutes, or until cheese is bubbly and just starting to brown.

***********************************************************

Flax skillet bread or buns

[Juliebove]

I don't have problems with gluten, but I do have problems with dairy. I get sinus problems with it. It's possible that you could have an allergy or intolerance to that since it is in a lot of bread and crackers.

[GFqueen17]

I know two people who have celiac disease and their only symptoms were miscarriages. So it's definately good that you're getting checked out!

Also, 99% gluten-free is no good. Your body can't completely heal if there's still gluten in it.

[gfp]

celiac disease is an autoimmune disease. Basically the body turning on itself.

The trigger for this is gluten which the immune system misidentifies.

there is an individual threshold that our body repairs as fast as it damages but that threshold changes. Also the body is doing other damage that is not so easy to see until too late.

Cross that threshold and things spiral very quickly... because the body can no longer get the nutrients needed to self-repair.

[MrsJohnnyG]

99% gluten-free is no good. Your body can't completely heal if there's still gluten in it.

I know, I keep reading that, but what I want to know is WHY?

there is an individual threshold that our body repairs as fast as it damages but that threshold changes. Also the body is doing other damage that is not so easy to see until too late.

Cross that threshold and things spiral very quickly... because the body can no longer get the nutrients needed to self-repair.

Okay, this helps. Thank you for explaining it that way.

I haven't been able to sleep, my throat and sinuses hurt so badly. I hope I haven't TRIGGERED celiac disease by consuming all this wheat in the last week....

[ravenwoodglass]

I know, I keep reading that, but what I want to know is WHY?

Okay, this helps. Thank you for explaining it that way.

I haven't been able to sleep, my throat and sinuses hurt so badly. I hope I haven't TRIGGERED celiac disease by consuming all this wheat in the last week....

If you don't have celiac you can't 'trigger' it by eating wheat. Your body is only going to react if it is already forming antibodies. If you have been gluten light and your body is producing antibodies, or celiac, you may excaberate symptoms by adding in more gluten but if your body was not forming antibodies in the first place that wouldn't happen.

Once those antibodies are being produced it only takes a very tiny amount to start the antibody cascading throughout the body once again. That is why we need to be as gluten free as humanly possible. In addition many find that after the antibodies clear the system gluten free the body will tell us in no uncertain terms that it does not want the process to start again and many will find their gluten reactions to be much more violent after the body has healed. This really is a good thing as it is natures way of telling us we got into something that our body does not want.

[gfp]

If you don't have celiac you can't 'trigger' it by eating wheat. Your body is only going to react if it is already forming antibodies. If you have been gluten light and your body is producing antibodies, or celiac, you may excaberate symptoms by adding in more gluten but if your body was not forming antibodies in the first place that wouldn't happen.

Once those antibodies are being produced it only takes a very tiny amount to start the antibody cascading throughout the body once again. That is why we need to be as gluten free as humanly possible. In addition many find that after the antibodies clear the system gluten free the body will tell us in no uncertain terms that it does not want the process to start again and many will find their gluten reactions to be much more violent after the body has healed. This really is a good thing as it is natures way of telling us we got into something that our body does not want.

True but it depends how we DEFINE celiac disease.

My opinion is that many those people classed as gluten-intolerant because villi damage is not enough to classify as celiac disease are really just people with celiac disease waiting to happen and that the biopsy confirmed celiac disease means nothing than we crossed a threshold.

[ShayFL]

I agree with gfp.

Have you been tested for "wheat" allergy with an Allergist??

[ravenwoodglass]

True but it depends how we DEFINE celiac disease.

My opinion is that many those people classed as gluten-intolerant because villi damage is not enough to classify as celiac disease are really just people with celiac disease waiting to happen and that the biopsy confirmed celiac disease means nothing than we crossed a threshold.

I agree completely with that. I should also note that I do not feel that gluten intolerance and celiac are seperate diagnoses and thus I do not differentiate between the two. I am of the opinion that gluten intolerance is simply another part of the spectrum of celiac disease.

[ShayFL]

I wonder.....Not every Celiac/Gluten Intolerant gets the disease with the VERY FIRST bite of gluten....so is gluten really the "trigger". Or is something else the "trigger" that makes the body start reacting to gluten in the first place.......

A lot of women get the disease after childbirth....so clearly "stress" is one trigger. Infection is another.

You can have the genes.

Eat gluten.

But really I think one of the other things has to happen to "trigger" the disease: stress, infection, trauma, antibiotic use, etc.

This would explain why SO MANY Celiacs/Gluten Intolerants DO NOT get well just removing gluten. They didnt fix the "triggering" problem.

i.e. stress reduction and REST, rebalancing the gut flora, therapy for emotional trauma, etc.

[gfp]

I wonder.....Not every Celiac/Gluten Intolerant gets the disease with the VERY FIRST bite of gluten....so is gluten really the "trigger". Or is something else the "trigger" that makes the body start reacting to gluten in the first place.......

A lot of women get the disease after childbirth....so clearly "stress" is one trigger. Infection is another.

You can have the genes.

Eat gluten.

But really I think one of the other things has to happen to "trigger" the disease: stress, infection, trauma, antibiotic use, etc.

This would explain why SO MANY Celiacs/Gluten Intolerants DO NOT get well just removing gluten. They didnt fix the "triggering" problem.

i.e. stress reduction and REST, rebalancing the gut flora, therapy for emotional trauma, etc.

Just an alternative viewpoint....

Stress, illness, injury, pregnancy .... all of these put stress on the immune system.

When we get older we also heal less quickly and effectively.

Once we go past that critical point of destroying faster than repairing then regardless of other things we loose our ability to adsorb nutrients and repair ourselves.

At this point if we eat gluten we destroy and our repairs are already overloaded...

We can very quickly do a LOT of damage because instead of 3 steps forwards 2 back we go to 3 steps back....

The worse it gets the faster we spiral.

This doesn't mean a damaged gut flora helps at all but the reason it's important is because the reason many celiacs don't heal completely is they don't do a gluten-free diet ... but a gluten-free lite diet.

See my CODEX post... 10mg/d on average was enough to cause negative villi repair.

10mg/day is a tiny tiny amount....

[ShayFL]

Healing is a complex issue indeed. And I am sure there are many multi-faceted reasons people do not heal.

I was just referring to what "triggers" it mainly. But you also have a valid point about as we age it is harder to heal.....already so much repair work going on in an older body....that it can take time and 100% gluten-free diet to "get anywhere".

[happygirl]

www.celiaccentral.org has good information/personal stories about Celiac and miscarriage.

[MrsJohnnyG]

Thank you all... this is a lot to take in.

Have you been tested for "wheat" allergy with an Allergist??

No, not yet... this has all come up very suddenly. Until recently, I had no reason whatsoever to think I could possibly be gluten-intolerant. Then again, as I mentioned, I have never been much of a bread eater, nor processed food eater, although the times that I did consume bread (e.g., the summer I bicycled through France - I ate a baguette and several pastries every day ), I never experienced any adverse effects whatsoever.

I have just gone through my fourth late-first-trimester miscarriage. If that's not a stresser, I don't know what is. I can certainly see how that stress coupled with my week-long pre-celiac-testing gluten-fest could cause this allergic reaction... if indeed I am gluten-intolerant.

Frankly, I don't know what else could possible be causing all these miscarriages if it's not celiac disease. My husband and I have been tested for everything under the sun except for that. My fertility specialist (who specializes in recurrent miscarriage) is stumped by my case... but he doesn't think celiac disease could be the cause here. Instead, he's pushing for IVF (something that would bring $25k to $40,000 into his practice) instead of a simple test. (Yes, I am changing specialists!!) There's no way I'm going to shell out $40,000 on IVF only to miscarry AGAIN.

Sorry for the ramble... thank you again for everyone's insight. I still have a lot to learn about this.

[LDJofDenver]

How much corn meal is required - it was the last thing on the ingredient list. I really want to try this recipe, have only purchased ready-made gluten free items thus far (some of the gluten-free english muffins could be used as hamburger bun).

Do you/I have to worry about buying grocery store meats, like I noticed some of the packaged hamburger says "and natural flavors", and sometimes we buy those wonder-roast rotisserie chickens (whole baked chickens, hot) for quick and easy meals. Do I need to be concerned with whatever they may have basted the chickens with, etc.?

Wheat is easy.

Make gluten-free bread (recipe to follow ). It tastes way better than Wonder bread.

Make rice pasta instead of wheat (you don't even have to tell him, nobody can tell the difference).

*****************************************************************

Make pizza from scratch using corn tortillas for crusts.

Heat over high heat on each side for 2 minutes, until slightly blistered. While they are heating, dump a can of El Cheapo tomato sauce into a bowl. Stir in a teaspoon of sugar, as much garlic powder as you like, and torn fresh basil.

Move tortillas onto a baking sheet sprayed with PAM. Top with sauce and shredded mozzarella or sliced provolone (which comes in convenient round slices just the right size for corn tortillas).

Put tortillas under the broiler for 2-4 minutes, or until cheese is bubbly and just starting to brown.

***********************************************************

Flax skillet bread or buns

[babysteps]

Do you/I have to worry about buying grocery store meats, like I noticed some of the packaged hamburger says "and natural flavors", and sometimes we buy those wonder-roast rotisserie chickens (whole baked chickens, hot) for quick and easy meals. Do I need to be concerned with whatever they may have basted the chickens with, etc.?

Me, I worry because I have reacted to foods with "natural flavors" - can't promise if it was a gluten reaction or a separate sensitivity, but most stores have at least one hamburger choice that is really only ground beef with no other 'ingredients'.

Rotisserie chickens usually have an ingredient list on the package somewhere, or you can ask the counter folks. Yes, I do check-check-check. One store by us has a plain (just salt & pepper) roast chicken plus an 'Italian' that is gluten-free, another nearby store has no 'safe' choices.

The good news is there are usually gluten-free options, just have to read the label to find/confirm them.

[Dedrasmom]

Hi FF, this recipe sounds great. I have a similar one that my hubby loves. What amount of Cornmeal is needed. Someone else asked that also. Thanks.

Belinda in NC

Wheat is easy.

Make gluten-free bread (recipe to follow ). It tastes way better than Wonder bread.

Make rice pasta instead of wheat (you don't even have to tell him, nobody can tell the difference).

*****************************************************************

Make pizza from scratch using corn tortillas for crusts.

Heat over high heat on each side for 2 minutes, until slightly blistered. While they are heating, dump a can of El Cheapo tomato sauce into a bowl. Stir in a teaspoon of sugar, as much garlic powder as you like, and torn fresh basil.

Move tortillas onto a baking sheet sprayed with PAM. Top with sauce and shredded mozzarella or sliced provolone (which comes in convenient round slices just the right size for corn tortillas).

Put tortillas under the broiler for 2-4 minutes, or until cheese is bubbly and just starting to brown.

***********************************************************

Flax skillet bread or buns

[Jestgar]

Hi FF, this recipe sounds great. I have a similar one that my hubby loves. What amount of Cornmeal is needed. Someone else asked that also. Thanks.

Belinda in NC

I'm sure it's just a small handful to sprinkle on the pan so they don't stick.

[Fiddle-Faddle]

Yup, sorry about that!

Spray the pan or pans with PAM (NOT the kind with flour in it!), and then dust with cornmeal.