How much gluten can she actually eat?

[TYH]

Hi all!

My daughter was diagnosed and started a gluten-free diet 1 year ago. Her number were 100>. Now 1 year later her results came back <2 completely undetected which means she's doing well. Her symptoms have also disappeared.

In the past year, I have been using the same knife  and cream cheese or peanut butter that was just used for regular gluten bread. The cream cheese may have bits of toast from her sisters bread....She has snacks that say may contain gluten but don't actually have any gluten in the ingredients. I also give her and food that isn't classified as gluten free but doesn't have any gluten ingredients.

 

I am wondering if it is possible that small amount of gluten are actually okay. For example barley malt. There are many things she could eat if we experimented with this. Her grandmother makes a delicious corn flake coated chicken, rice crispie treats made at camp..... Not life changing but once in a while it would add some enjoyment for her.

Am I taking a huge risk by doing this? I know the experts say NO GLUTEN but has this been experimented with? I know barley malt is a very small amount. 

Another thing I am thinking of experimenting with is non gluten free oats.

Any thoughts or suggestions are appreciated!

 

 

[trents]

Welcome to the forum, TYH!

Your question of how much gluten can your daughter actually eat cannot be answered with any certainty since individual celaics vary enormously in their tolerance to small amounts of gluten. This is the kind of thing that can only be answered by experimentation.

But I must say I am uncomfortable with your approach. There really is no objective way to assess at what point various small amounts of gluten reintroduced into your daughter's diet will all add up to the point where she starts to have reactions. One issue is that gluten reactions can be largely asymptomatic such that low level inflammation of the small bowel mucosa is still happening. Another issues is the total gluten load if you start allowing small amounts of gluten back in here and there with this and that food product. How do you monitor the total gluten load when it may vary from day to day? Another issue is that food products that are not tested to be gluten free may vary from batch to batch as to the amount of gluten they contain. So, it may be okay one time and not another. I think you are walking out onto a slippery slope here.

And why not ask granny to use a gluten free corn flake brand? You could even supply her with it.

[TYH]

Thanks for your response. I do agree. I am curious what you think about doing experiments with more frequent blood work. Maybe trying it out for three months and then doing bloodwork?

If her recent bloodwork shows a low number doesn't that mean that what I have been doing so far has been okay? 

Where do you find gluten free cornflakes/ crumbs?

 

[trents]

Gluten free cornflakes: https://smile.amazon.com/s?k=Gluten+free+cornflakes&crid=QRMGPYKR5TYL&sprefix=gluten+free+cornflakes%2Caps%2C161&ref=nb_sb_noss_1

I have seen name brand gluten free cereals in the grocery store as well. Most major food companies like General Mills I believe have started to offer gluten-free versions of some of their cereals.

Yes, low antibody numbers would mean she is doing well. But if you are going for less than strict gluten free I would have her tested every 6 months if that is feasable.

But what if at some point her antibody numbers start to climb? If you have been allowing a vairety of low gluten foods into her diet, which one will you know is the problem?

How old is your daughter?

[TYH]

Thank you I have never seen gluten free cornflakes in the grocery store before. 

 I was thinking of experimenting with one thing at a time. Barley Malt first etc. I was wondering if anyone else has ever done any experimenting. My daughter is 5.

[trents]

Changing one thing at a time is always a wise strategy. But keep in mind that it can be a cumulative effect if you start adding other things with small amounts of gluten. It's not necessarily the amount of gluten in one food that is the issue but the total amount of gluten consumed say, in a 24 hr. period from all foods.

The amount of barley malt in a serving of corn flakes would probably not cause most celiacs problems but likely would for very sensitive celiacs. The FDA 20ppm limit to qualify for using the "gluten free" label is not strict enough for some.

I'm not sure I have seen gluten-free cornflakes in grocery stores but I am sure I have seen gluten-free cheerios. Sometimes store managers will agree to order specialty products that they haven't historically stocked on a trial basis if you request it. And then they will see how well they sell.

Edited November 24, 2022 by trents

[GF-Cate]

There are lots of potential long term risks/long term health conditions that can develop with untreated (and I would say undertreated) celiac. As an autoimmune disease, the body has identified the protein gluten as a danger, therefore triggering the body to attack itself when detected (in the case of celiac, this happens in the small intestine). This damages the villi in the small intestines, which over time, will lead to nutrient deficiencies, which can cause a multitude of long term issues.

The Celiac Disease Foundation gives a good overview of other long term health conditions that can develop:

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

Most of these develop over time, not overnight, so for celiac's being dedicated to being truly gluten-free throughout your lifespan is crucial as to not continually trigger autoimmune reactions. 

People with autoimmune diseases like celiac also have a prevalence of devloping additional autoimmune diseases (type 1 diabetes is a common one as there is a shared genetic component). The chart in the link above indicates that those diagnosed between ages 2-4 have a 10.5% chance of developing additional autoimmune diseases. 

Though her body may be very resilient to the level of cross-contamination she's getting now, that may not be the case as she gets older. That level of CC may also cause long term damage over time. 

Small amounts of cross contact can also have subtle effects that, as a 5 year old, she may not be able to express to you or understand the connection to a reaction that may be caused from even very tiny quantities of gluten. 

For things like peanut butter and cream cheese, you should definitely have dedicated & labeled gluten-free containers and clean knives so CC is not happening (and obviously a dedicated prep area for her food). Also from link above "Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage." 

Be sure that you and other family members are tested (every 2-3 years is the guideline, sooner if symptoms develop) as celiac runs in families and there is a higher chance of first degree relatives developing it (you / her other parent can have the genetic test done to see which of you (or both) passed the gene(s) to her).

It is a lot of work (and sometimes very inconvenient) to have to revise recipes, especially foods that are meaningful or special in your family, but I assure you, it can be done. It also can be a fun challenge and rewarding. And by the time she is grown up, you will have gluten-free recipes for all of her childhood favorites that you can pass along to her! More than ever there are fantastic gluten-free cookbooks and websites with just about every gluten-free recipe you can imagine. 

For the chicken dish you mentioned, there are many brands of gluten-free corn flakes, including Schar, Barbara's & Nature's Path. And rice krispie treats are very simple to make gluten-free (there are brands of gluten-free rice "crispy" cereals & many brands of marshmallows are gluten-free). No one will notice the difference in taste by making them gluten-free and the gluten-free version can become your new family tradition to keep your little girl safe & healthy. 

If there are ingredients you can't find in local stores, ordering all kinds of gluten-free foods online is very easy these days, so you should be able to find just about any ingredient you need. If I just need one or two things for a special recipe, or anything I can't find locally, I will bundle with other items on my grocery list (dry goods, household products, etc) at online retailers like Target or Walmart to get free shipping. 

[TYH]

To clarify, I am very dedicated to my daughter and I did the cream cheese on purpose. I was told to do this by someone since they explained that the more you limit the gluten crumbs the more sensitive the body becomes to it. Since her bloodwork came back perfect I am now wondering if small amounts of traces of gluten is okay. Yes I could easily eliminate them if necessary. 

[trents]

This "someone" who advised you to continue exposing your daughter to small amounts of gluten . . . were they qualified to give such advice?

Nearly all of us who have lived with celiac disease for years will tell you that it is true that once you have been without gluten for a significant amount of time you lose whatever tolerance to it you might have had and that exposure to gluten will then bring more violent reactions than what we experienced before diagnosis. Even so, this does not mean it is good idea to keep introducing small amounts of gluten to maintain some tolerance since it will likely keep inflammation going at a low level, one that may be asymptomatic and not show up in testing.

[TYH]

It was from their personal experience. So are you saying that there is no way to experiment with small traces of gluten in the diet?

[Russ H]

15 minutes ago, TYH said:

It was from their personal experience. So are you saying that there is no way to experiment with small traces of gluten in the diet?

No, you can't do this. It has been tested extensively with lots of research. Coeliac disease is not an allergic type reaction where you can increase tolerance by gradually increasing exposure. The immune reaction in coeliac disease is more akin to fighting off a virus - every time the body is exposed to gluten, it boosts antibodies and T-cells and these are what causes the symptoms and damage. Once you boost them, it takes months to come down. It is essential to keep gluten exposure to very levels to avoid an immune response. Less than 10 milligrams per day is generally considered a safe level for most people. The lower the better. There may well be treatments for coeliac disease in the future but at the moment, complete abstinence from gluten is the only treatment.

[trents]

2 hours ago, TYH said:

It was from their personal experience. So are you saying that there is no way to experiment with small traces of gluten in the diet?

I'm saying there is no safe way to experiment with it. Goodness, most of us get "glutened" anyway, at least occasionally, despite our best efforts to avoid it without having to "experiment" with purposeful exposure.

[TYH]

okay thanks so much!

[Russ H]

8 minutes ago, TYH said:

okay thanks so much!

Good luck. It can be a real pain but is worth the effort.

[Wheatwacked]

You won't be doing her any favors. Make sure she gets plenty of sun for vitamin D, it's the autoimmune vitamin. Stomach acid can break down small amounts of gluten from cross contamination. As she grows there will be enough peer pressure to eat gluten (kids are like that) so teaching her that sometimes it is ok will open a can of worms eventually opening the way for "It doesn't bother me, so why should I be different." My son was diagnosed when he was weaned and was gluten free until 5 years old when he started sneaking it and the doctor (not the diagnosing doctor) said it was ok. In his forties now he is starting to feel the effects. Aside from the fact the white wheat flour has an omega 6 to omega 3 ratio of 22:1. The ideal is less than 3:1. Lots of inflammation that will eventually cause arthritis, congested sinuses, cardiovascular disease, endrometriosis, fertility issues, things that become evident only after years of consumption. One example, I found when I became gluten free at age 63 I no longer had to take out my contact lenses to clean protein buildup. Periodic blood work for for gluten would be a good idea, maybe as part of the annual checkup; but don't make it an obsession.

Edited January 30, 2023 by Wheatwacked
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