Newly dx, question about managing kitchen

[HF734]

Hello.  I am newly diagnosed, 5 weeks post endoscopy, started gluten-free that day.  My symptoms were never that severe, just periodic mid-back ache, short term fatigue and D that I couldn't figure out for a couple years.  I have a question that I can't seem to find scientific answers to, despite lots of reading.  Because my symptoms weren't that severe, I don't expect to be able to sense if I've accidentally taken in a little gluten.  However, from what I understand, small amounts could cause a response from my immune system, and even if I don't feel sick, would set me up for increased risk for all the secondary issues (cancer, other auto-immune issues, etc).  So, that leaves me needing to avoid small gluten exposures for future health prevention, not for fear of getting notably sick. 

From my research it appears the daily limit is 10 mg, or 1/250th of a slice of bread.  My very scientific husband and I have been using this number to try to figure out how to run our kitchen (family of 4 including two teenagers).  To me, this means avoid all crumbs, have my own butter, toaster, cutting board, etc, which I've done.  But every post I read recommends to use your own silicone spoons, wooden spatulas, tupperware, etc, even though it's been washed.  I cannot imagine the microscopic gluten on a clean wooden spoon would add up to 10mg of exposure per day.  I gather there are many people who are much more sensitive than I am.  But my question is, given that I'm not that sensitive, from a scientific point of view, is it ok to share clean utensils, tupperware etc and assume I am keeping my exposure to <10mg/day?  Thank you for reading!

[kareng]

I share utensils , dishes, etc.  they go in the dishwasher and seem fine.  

[Ennis-TX]

The issue comes from if the item is porous, hard to clean, or scratched it can retain the gluten proteins and transfer them IE cutting boards, worn Tupperware, wooden spoons, scratched utensils/pots/pans, colanders, etc. The newbie 101 covers many things.

Some people can share a house fine, some can not, there are a few things that make it almost impossible....IE if gluten flour is used in the kitchen (airborne flour can be inhaled, trapped in the mucus and swallowed in addition to settling on everything it can be airborne for over 24 hours also) or others can not stop using your dedicated cookware. There is also how sensitive you are.

Few tips in a shared house, get butcher paper to prep you food on to avoid the CCed counter, get your own set of cookware and mark them and keep them separate. Keep Gluten Free food on top shelfs in the fridge and pantry to keep gluten crumbs from getting on them. Cook whole foods starting off til you get used to the diet. I went the extra mile back then and used food service gloves and washed my hands like crazy, making sure to either leave fridge, cabinets, facets on/open before I started or cleaning them before...bit extreme but my family would often get food residue on them.

it is quite easy to go whole house gluten free if you give up alot of processed junk and go whole foods and scratch cooking. I still make many staples gluten free, and I have the option to by anything else as a treat as they make gluten free options of everything now.

[GFinDC]

I live with gluten eaters and do fine with a shared kitchen.  I keep some cooking pans in a separate area so I don't have to worry about them being used by others.  I have my own silverware that I keep separate in a container and just rinse it with water before using.  Washing any smooth ceramic should be fine.  Metal is usually ok also unless it is scratched up or old cast iron that is a very rough surface and hard to clean effectively.

Make sure the hairy person (hubby) brushes his scientific teeth before smooching you.   As Ennis said wheat flour in the air is a concern.  So I just stay away from the kitchen when wheat flour is being used.

The reason you need to be careful is the immune system tends to get testy when germs are around.  Your immune system now considers gluten molecules germs, and will attack them.  The immune attack also goes against your small intestine lining (villi).  Hubby probably knows that germs are very small and the immune system is very sensitive to them.  Not many people would think it is safe to eat 10 mg's of germs.

Once the immune system learns about a problem (germ) or gluten in this case it never forgets. 

 

[RMJ]

The 10mg figure is an average.  Some people can handle more, some less.  The FDA reviewed all the literature before finalizing the gluten free labeling regulations and there was quite a range.  

if your scientific husband want to read the whole FDA review let me know and I’ll try find the link.

[cyclinglady]

48 minutes ago, RMJ said:

The 10mg figure is an average.  Some people can handle more, some less.  The FDA reviewed all the literature before finalizing the gluten free labeling regulations and there was quite a range.  

if your scientific husband want to read the whole FDA review let me know and I’ll try find the link.

And the study size was tiny.  A little over 50 celiacs, if I recall.  

[RMJ]

Here is the FDA review : https://www.fda.gov/media/81500/download

 

[HF734]

On 10/9/2019 at 1:16 PM, RMJ said:

Here is the FDA review : https://www.fda.gov/media/81500/download

 

Thank you so much, we are in the process of looking it through... its long! 

It's really challenging to figure out how fastidious to be.  It would be one thing if I felt the symptoms when I ingested a small amount, but because I don't, it becomes a theoretical issue.  Thanks to all for their advice.  

[RMJ]

I am also without symptoms, but my antibody levels didn’t come down to the normal range until I was super careful about possible contamination.

[HF734]

1 hour ago, RMJ said:

I am also without symptoms, but my antibody levels didn’t come down to the normal range until I was super careful about possible contamination.

This is very helpful to know.  If I can ask, what were the changes that you made after your test was still elevated?  It would be very helpful to know the specifics of what habits made the difference for your antibody levels.  And how often did you get tested in the beginning?  Thanks!!

[cyclinglady]

Here are some standard recommendations for follow-up care:

“New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.”

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

For many, trialing the Fasano diet can be helpful.  Dr. Fasano is one of the world’s leading celiac disease experts.  He developed this diet after too many celiacs were considered non-responsive.   Turns out that a large majority were getting hidden amounts of gluten into their diets despite their best efforts. 

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

If you have time, this video featuring Dr. Fasano is great!  

My personal advice?  Avoid eating out unless it  is a dedicated gluten-free restaurant until you are feeling well or see improvement.  

[RMJ]

I was high positive on TTG IgA and IgG and DGP IgA and IgG.  The one that took longest to get to normal was the DGP IgA. My doctor is stingy  with ordering the tests so I was only tested once  a year.

DGP IgA started in the 140s (normal 0 to 19).

After 1 year of reading labels and avoiding gluten ingredients DGP IgA  was in the 50s. The rest were normal but near the top of the normal range. After 2 years stuck in the 40s and 50s I tried the Fasano diet.  DGP IgA came down to the  20s.  I added some processed foods but only if certified gluten free.  Stayed in the 20s for 2 years and I had an endoscopy, Marsh 3a.  I suspected a saucepan, stainless steel but not a smooth surface.  I threw that out, although one would think any gluten would be gone after several years of non-gluten use, and all antibody results have been nicely within the normal ranges since then. 

Five years from diagnosis to normal antibodies.

[Beverage]

Lack of noticeable symptoms does not mean that an autoimmune reaction had not been triggered.  Interpreting the level of reaction based on your symptoms does not necessarily correlate to having a reaction or not.

I did not have the typical intestinal symptoms at all. It is hard for me to know when I've been glutened.  It took a month of eating something that was contaminated before I got any bad symptoms, but by then I was really sick.  Now I realize the more subtle feelings, joints aching, restless leg, high blood pressure, a little blue mood. 

The hyper vigilance of watching my partner prepare anything for himself, the chance of accidentally turning over his burger bun toasting on the grill with the wrong tongs, finding a crumb on the counter and freaking cuz I don't know what kind it is, not being able to set my vitamins down on my place mat at the table because he may have used that mat previously, not being able to put down my eating utensils on the mat at the table, wiping down the cabinet knobs continuously...it all drove me nuts.

I talked to him and told him I couldn't live that way and I deserve to have one place in the world without those concerns.  He agreed and we've set up a little mini kitchen in the basement/garage where he can take his sandwich fixins down there and make a sandwich with his gluten bread and eat it there.  Everything prepared in the kitchen is gluten free, almost exclusively whole food, except some gluten-free pasta every so often, so nobody is missing out. He can drink gluten beer or have a whiskey in the house, and he is very careful.

[RussHunt]

I certainly understand the risk of cross contamination that might result in situations like cutting fruit on a cutting board where bread has recently  been sliced. But,  I am not sure I see how gluten on, for example, scratched up Tupperware, can cling so tenaciously as to resist the dishwasher but then easily move to some otherwise gluten free food. Has this actually been tested or is this just “common sense” run amuck?

[trents]

Good question, Russ. I wonder about that too. The problem is that sensitivity varies so much within the celiac community that its really hard to get a handle on what is effectively gluten free and what is not.

[RussHunt]

I agree that levels of sensitivity is a significant and highly variable issue.  But, that is not what I am talking about here.  What I am questioning is, how is it that a crumb/bit/molecular chain of proteins manage to cling to a surface like tupperware, wood, or steel blade through a wash cycle or hand washing with a clean wash rag or sponge but then release itself onto some food where it is not wanted?  It conjures up for me this image of gluten being a sentient and willful adversary that is somehow driven to resist removal and yet easily disengage and implant itself elsewhere when it so desires.

[trents]

46 minutes ago, RussHunt said:

I agree that levels of sensitivity is a significant and highly variable issue.  But, that is not what I am talking about here.  What I am questioning is, how is it that a crumb/bit/molecular chain of proteins manage to cling to a surface like tupperware, wood, or steel blade through a wash cycle or hand washing with a clean wash rag or sponge but then release itself onto some food where it is not wanted?  It conjures up for me this image of gluten being a sentient and willful adversary that is somehow driven to resist removal and yet easily disengage and implant itself elsewhere when it so desires.

Yes, but whether or not it does and whether or not it does in sufficient amounts to actually cause a reaction is the very question I was addressing. It's just hard to know since there are those who claim it is happening to them and we have no objective way of determining whether it is real or imagined.

[Scott Adams]

Welcome to the forum @RussHunt!

So this article is a summary of a study that covers this topic in more detail, and I will admit that it wasn't one of our most popular articles, but it is based on published research...we didn't just make it up. I think reactions will vary greatly from person to person, so it's probably best to do everything reasonable to avoid cross-contamination.