Help Me Understand

[Whatnext?]

From what I understand....

You must be completely gluten free - no cheating or your intestine will be damaged. But...

To have a biopsy come back positive - you must do a gluten challenge or you might not have damage and the test will be negative.

I opted to have the biopsy so that I would know how serious I needed to take this whole thing. The biopsy came back positive (as was the blood test). But I find myself still questioning how grave it will be to eat an occasional morsel of gluten filled bread, or pizza crust, or even the occasional accidental cross contamination. (Pizza will be the hardest to get over.)

It seems that the consensus regarding 'cheating' or having a 'little bit' of gluten is that you can't do it. That you have to be completely gluten free. Not even a crumb. Which I have no problem with, but how is it, then, that it only takes a little bit of gluten to cause damage, but if you have been gluten free and want the endoscopy/biopsy you must eat gluten for months to have damage enough to test positive. I understand, to a certain extent, that you can have damage in one part of the intestine but not another and, therefor, it is possible to have damage that goes undetected, but these two statements still seem to contradict on another.

Will an occasional cc really do that much damage? or is it just uncomfortable?

[ravenwoodglass]

Since gluten triggers antibodies the effects of getting a bit of CC will cause the antibodies to flare causing great distress in many of us. We want the antibodies, which cause the autoimmune impact, to go away. Even a small amount of gluten will trigger them. However it can take time for those antibodies to be present in large enough numbers to show up in a blood test or to damage the villi enough so that the damage is visible. Some of us also will have damage to other organs before damage to the gut, DH is one example of that as is gluten ataxia where the antibodies attack the brain. Most celiac testing is designed to find the gut damage and the damage needs to be pretty severe before it is recognized.

[tarnalberry]

Because the body is damaged by very low levels of intestinal atrophy (and the resulting autoimmune process that goes with it), but the biopsy is highly likely to miss very low levels of damage.

Basically, it's like checking out a house you might buy. You can just drive past it, or even park on the street and take a look at the front yard, or even go inside. But you may not notice the water damage and fire damage in the kitchen, behind the walls. Still damaged, but you just couldn't look closely enough.

[Poppi]

For me even breathing deeply in the bakery or a few tiny crumbs finding their way into my food is cause for a major 5-7 day flare up. I have no idea what damage a crumb does to my intestines but I can tell you that a slice of pizza is in now way worth a week of debilitating pain and fatigue.

For what it's worth the Kinnikinnick pizza crusts are really good. I make myself pizza a couple times a week and these crusts make me happy.

[GlutenFreeManna]

I think the flaw in your thinking is you are thinking about it as if the testing is perfect and able to see the slightest amount of damage. However the reality is that the testing is not very good yet and can easily miss damage that is patchy (when talking about the biopsy). You have 20 ft of intestines and the biospy cannot reach every inch of it. So just because tests may be negative doesn't mean there is no damage, it means the test is not perfect. If we could simulate damage in a test tube perhaps we would see damage easily from small amounts, but we would still need to put the sample under the microscope to see it. Never the less, eating pizza (even if once a year as a "treat") is NOT a small amount and would very clearly cause large amounts of damage and set-backs to your healing. It also could make you more suseptible to getting sick with something else. As an example from my own life the last time I had a large accidental glutening was when I ordered gluten-free pasta and they brought me real gluten pasta instead. I was so sick from that glutening that the following weak I got "a cold" which turned out to be brochitus and then turned into pneumonia, putting me in the hospital. I do not think this was just coincidence that I got very sick while my body was fighting a large accidental dose of gluten. I lost almost two months to being sick (all of November and the first few weeks of dec.) all because of a restaurant mistake. No way would I do that ON PURPOSE! Besides I can make a gluten-free pizza crust that is just as good (almost better!)as the crusts I used to make pre-gluten-free. Check out this recipe: Open Original Shared Link My non-gluten-free husband loves this crust. I have tried many others and was disappointed but this one is the best. Just be sure to follow the directions carefully and if you use your own flour instead of the King Arthur flour make sure your rice is finely ground (I have heard you can grind it finer in an unused coffee grinder if you need to).

[Takala]

It's like termite damage to your house's foundation and inner support structure. By the time you can see it, it's massive.

You can cheat, but chances are that you will feel so miserable when you do so, after being off of gluten for awhile, that you will not want to. The mindset of you supposedly can't resist something is a combination of lack of experience, habit, and an actual symptom of being addicted to something you should not be eating.

It's not like there are not decent gluten- free substitutes for the above mentioned foods that you named. Many pizza chains now offer a gluten free crust option.

[mushroom]

Then you have to consider the ranges that they give in the testing process. In the blood work, if your antibody score is 19 or less on some tests, you are counted as negative, 20-25 let's say, mildly positive, and only 26 and over is positive. They deliberately set the goal post high to screen out other possibilities/reasons for antibodies and ensure that it is celiac. So let's say that that bite of pizze created a level 1 anatibody count - you would be way negative. That one antibody would maybe set in motion a process in your small intestine that will eventually lead to measurable damage, but at this point it is not detectable. It is the cumulative effect of more and more antibodies that does the damage.

[sb2178]

I like Udi's the best of the few commericial crusts I've tried. I'll be happy to send you links to a sauce recipe, and you can probably manage cheese and toppings on your own?