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Like so many other parents with newly-diagnosed celiac children, I spent a lot of time reading about how to properly feed someone with celiac disease.
Information on the diet itself is very simple to find, while finding products is merely a matter of trawling through the grocery store. But what I could not find - for the most part - was any practical advice on exactly how to cope with gluten-free on a daily basis.
What I did find out there on the net was dire. I will not link to the specific sites, but during my research I found the following recommendations from various people:
- Wash hands before eating
- The pantry, kitchen, etc. must be scrubbed clean of all gluten
- Clean obsessively
- Use bleach or strong cleaners to ensure surfaces are gluten-free
- Read all the ingredients in foods, every time
- Foods prepared in facilities that have non-gluten-free lines, or on shared equipment, is not safe
- Foods might have "hidden" or unexpected gluten in them that are not declared on the ingredients list
- Prepare GF foods in a separate area from non-GF foods
- Keep GF dishes, cutlery, etc. in a separate area from other dishware
- Dishwashers are not necessarily adequate in cleaning dishware of gluten
- When changing over to gluten-free, replace the following items:
- Toasters and toaster ovens
- Non-stick pans
- Plastic and wooden utensils
- Plastic and wooden cutting boards
- Colanders
- Keep GF foods separate from regular foods
- Keep separate containers of condiments specifically for GF eaters, to avoid cross-contamination- Check or avoid foods prepared by friends and relatives.
- Avoid buffets at restaurants, resorts and hotels.
- Talk to the server / manager at restaurants, every time.
- Verify that your plate is GF when it is delivered to your table, every time
- Avoid takeout like the plague
- Avoid everything at airports, coffee shops, etc
Most of these are predicated on the following assumptions:
- Reactions can occur from even minute doses of gluten.
- Amounts of gluten sufficient to cause a reaction may be invisible to the naked eye.
- Gluten is sticky / gluey, and difficult to clean up.
I, of course, started fearing the worst and began preparing separate areas for my daughters dishes, glasses, toaster, and so forth. But my wife, bless her, figured most of this was a lot of bollucks, pointing out that non-GF and GF foods, dishes, cookware and dishware co-exist quite readily in many restaurants, and that people with seafood allergies can often navigate restaurants and buffet lines without difficulty.
Of course, since neither of us are celiac and have utterly no experience, there was no way for us to know for sure.
So I decided to go to a reliable source - an actual person who has had celiac her entire life.
I obviously cannot identify my contact by name, so I'll call her Kate.
Qualifications: Kate was diagnosed with celiac when she was 2. She was colicky, never happy, and was not growing well. She never had an endoscopy because of her age, but putting her on a gluten-free diet so obviously improved her condition that celiac disease was obvious. She has, therefore, lived her entire life on a gluten-free diet.
During her childhood, Kate went camping, to summer camp and to Disneyland. When she was older she backpacked in Europe and has gone traveling many times. She stated that she rarely gets exposed, even when traveling.
Kate does not know her tolerance for gluten and could not identify a "dose" at which she will become symptomatic. However, her symptoms are very severe and quite unmistakable.
Kate is now a middle-aged professional and is married. Her hubby is not celiac, so they co-exist with gluten and gluten-free diets in the same household. He supports her in keeping her from being exposed and overall, they are very successful.
Disclaimer: Again, read standard stuff here.
I'm not a medical professional nor a celiac; I claim no special knowledge. This is just my understanding of what I was told from someone who should know. I believe this information is accurate but this is, at best, the experience of a single individual.
There is, of course, little doubt that the sensitivity of various people to gluten varies enormously. There is no way to quantify this, and so what works for this person may or may not work for anyone else. It may or may not work for you, and I take no responsibility if it doesn't!
Note that, as a rule, you should NEVER take ANYTHING you read on the net as gospel - not even this blog. Healthy skepticism is the hallmark of critical thinking.
From this, EVERYTHING you read should be suspect, and you should (ideally) have independent confirmation before you decide that any given "fact" is correct. You should also never take the opinion of a single (unqualified) individual as correct without similar verification.
Regardless, talking to Kate was the most reliable benchmark I could find about the do's and don'ts of beginning a gluten-free lifestyle. After all, if anyone is an expert, it will be her - not me.
I'm going to break this down according to the specific items listed above, but I'll sum up a few basic principles first:
- Clean is clean. If you have clean counters, cutlery, etc, you don't need to worry about it being "extra" clean. There will be no mysterious, invisible residues or tiny trapped particles waiting to "gluten" you.
- Gluten is basically like dirt / dust. In the vast majority of cases, you can see potential problems. For example, you can see flour, crumbs, and so forth on a table or food particles stuck on a fork. Wiping it down or washing in the sink will do just fine.
- Be mindful, not paranoid. Clean counters and such beforehand and you will be fine.
These are obviously generalizations, but helpful ones.
Here's the specifics as I understand them:
1. Wash hands before eating: YES. You should always wash before eating, just in case. Many people do this regardless so this should be no big deal.
I imagine that at parks and the like, washing with paper towels and water will be OK. This goes back to the idea that crumbs are crumbs, and you can get rid of them.
2. The pantry, kitchen, etc. must be scrubbed clean of all gluten: NO. Kate and hubby do not obsess over this. Obviously you need to ensure that your GF foods do not come in contact with any gluten, but that is not the same thing.
Certainly it is prudent to clean out your drawers and cabinetry to get the crumbs out, to avoid having to re-clean all your implements on each use. I know our drawers were loaded with wheat crumbs. But once this is done and everything is clean, they will stay (reasonably) clean for a long while.
Wiping down the counters before food prep is fine. Use soap and water, or water alone if it's a light job. This will be enough to get any gluten off.
You can also use clean cutting boards, dishes, etc. to provide clean surfaces for keeping your GF utensils, cooking implements and so forth appropriately clean while cooking. If you accidentally place a utensil on the "wrong" surface, a quick rinse or scrub is enough to recover it.
This applies when staying with friends or relatives as well. A simple wash and wipe-down is sufficient to ensure that items are free of gluten - you do not need to pretend their kitchen is radioactive and banish yourself to a small table in the corner that has been scrubbed within an inch of it's life.
3. Use bleach or strong cleaners to ensure surfaces are gluten-free: NO. Wiping down the counters is good enough; cleaners are not necessary except as required to ensure surfaces are appropriately clean.
Bleach has no effect on gluten and is rather useless (and stinky). Gluten is, basically, a solid, and not a germ or virus. Bleach will neither "kill" it nor destroy it, meaning your only option is to remove it.
4. Clean obsessively: NO, see #2 above. You obviously have to be mindful, but you do not need to fret over every crumb or particle that might exist in the corners or on the floor. Crumbs cannot jump up to your counter or into your food. A quick scrub of countertops is fine to ensure they're clean.
The obvious exception will be in kitchens where baking occurs. Flour is finely divided and can disperse in air over a surprisingly wide area. In such instances a more diligent clean may be in order.
I will note that Kate helped her mother bake and prepare fresh, wheat-based pasta when she was a child. (!) She never had any issues as long as she washed her hands afterwards.
5. Read all the ingredients in foods, every time: YES. Foods do change, and identically-named products in different parts of the world may be different.
6. Foods prepared in facilities that have non-gluten-free lines, or on shared equipment, is not safe: NO. Kate has never had any issues with food as long as they do not have any intentional gluten-containing ingredients.
This obviously leaves aside products that have warnings such as "May contain wheat". Kate is actually not a big fan of these warnings since some of the products she has been successfully eating for years suddenly started having "may contain" warnings for no apparent reason. She still successfully eats these products based on her past experience, but has to avoid new products that have these warnings out of prudence, knowing full well that they might be perfectly OK.
(WARNING: The ability to consume foods prepared in mixed facilities obviously dependent upon the sensitivity of the individual. I have no doubt that certain individuals may have difficulty with cross-contamination from shared facilities. My personal opinion is that these people are in the minority, but that does not mean that this effect does not exist. So please be cautious at first.)
7. Foods might have "hidden" or unexpected gluten in them that are not declared on the ingredients list: NO. Kate has never gotten "glutened" from a product that had no gluten ingredients listed - see #6 above.
8. Prepare GF foods in a separate area from non-GF foods: NO. Kate and hubby prepare foods in the same kitchen. Wiping down or cleaning counters is sufficient to ensure she doesn't get exposed. In some cases, she said even just brushing off the crumbs was fine!
9. Keep GF dishes, cutlery, etc. in a separate area from other dishware: NO. Clean is clean and dishes out of the dishwasher or sink are perfectly OK for her. If in any doubt, a rinse or quick wipe takes care of it.
10. Dishwashers are not necessarily adequate in cleaning dishware of gluten: NO. Clean enough is clean enough; she has never had any issue with her dishwasher not getting dishes clean enough.
That, of course, is an oversimplification - all dishwashers sometimes have problems with getting dishes perfectly clean. But any issues, such as stuck-on food, are obvious and can be corrected in the usual ways.
There is certainly nothing wrong with using the sani-rise cycle, if you want to.
11. When changing over to gluten-free, replace the following items:
A. Toasters: YES, with caveats. Kate and family shared a toaster when she was little - something everyone swears in a no-no! - but the toaster was kept clean and cleaned after every use. Having a separate toaster eliminates this requirement and may be simpler overall.
B. Toaster ovens: NO. Cleaning the rack or using aluminum foil over the rack / tray is fine. Having a separate, small toaster oven instead of a dedicated GF toaster is also an option.
C. Non-stick pans: NO. Clean is clean, and Kate shares the pans with her hubby. When preparing different kids of food, they simply wash the pan in between to eliminate any contamination. This works fine and they have no concerns with gluten remaining in scratches or imperfections in the pan surface.
D. Plastic and wooden utensils: NO. Clean is clean and Kate has never known gluten to become trapped on the surface of these items.
Of course, lots of implements get beat up over time, so maybe they're due for replacement anyway. But don't toss them just because they touched flour once in their life.
E. Plastic and wooden cutting boards: NO. They share cutting boards without difficulty by cleaning in between uses. Again, regular soap and water is fine.
F. Colanders: NO. This might not apply to very fine-mesh plastic colanders, but certainly stainless steel metal colanders can be cleaned just fine.
12. Keep GF foods separate from regular foods: NO. Kate and hubby share a pantry.
13. Keep GF items on the top shelf of a fridge, where crumbs cannot fall on to them: NO. This has never been an issue.
14. Keep separate containers of condiments specifically for GF eaters, to avoid cross-contamination: NO. Kate and family shared jars and tubs by scooping first with a clean utensil, then spreading separately. Which is a good trick to save space in your fridge and avoiding having to buy everything twice.
Do note that while spreading, wheat crumbs can fly off unpredictably.
If you do accidentally contaminate a gluten-free jar, you can probably scoop out the "bad" part of the food with a spoon
15. Check or avoid foods prepared by friends and relatives: YES. Even well-meaning relatives can accidentally pick up the wrong product or use the wrong ingredient, especially with sneaky items like soy sauce. But once they understand what it's all about, they can usually do just fine.
16. Avoid buffets at restaurants, resorts and hotels: NO, but you do need to do one or both of the following:
- Check with the kitchen / chef to see what items were prepared without gluten, and/or
- Stick only with foods that are naturally gluten-free, such as plain meats, fruit, and dairy.
As a rule, she avoids all sauces, condiments and pre-processed items, along with the baked items (obviously). She notes that over time she has gotten a pretty good sense of what is safe and what is not.
Kate has also never had a "glutening" from cross-contamination of serving utensils at a buffet or restaurant. She does admit this is a risk, but it's a risk she's willing to take (occasionally).
(I will also note that I have a relative who has a shellfish allergy that is life-threatening. Despite this, he does occasionally brave family dinners and potlucks. This would not be a big deal except the family is primarily Asian, which means lots of seafood. Certainly everyone knows to not mix utensils between dishes, but if he can do it, there is a reasonable possibility that others can do similar.)
Note that Kate has been to resorts in Mexico several times, and has been able to eat at buffets each time while there. But she has also traveled where she will bring or shop for her own food and prepare it in the kitchenette in the hotel suite.
17. Talk to the server / manager at restaurants, every time: YES. If she doesn't get satisfactory answers or does get "bad vibes", they will go elsewhere. She admits that eating out is a risk and not everyone "gets it". She has also had the occasional problem, which again goes to the fact that eating out is a risk (though it may be an acceptable risk).
She notes that she has sometimes needed to go "off menu" in order to eat at some restaurants. The resulting food can be plain and expensive, but may be better than having to go elsewhere. This seems to be especially true when she's in a group, both for social reasons and because restaurants will be more accommodating for larger groups / orders.
18. Verify that your plate is GF when it is delivered to your table, every time: YES. She did have one incident where she went to the "usual" place and ordered the "usual", but it was prepared differently. Mistakes and changes happen - don't rely on things staying the same.
19. Avoid takeout like the plague: NO. If you find a supportive restaurant you can eat takeout food. Just be certain they "get it". If in doubt, don't order, and find another place.
20. Avoid everything at airports, coffee shops, etc: NO. Just read the ingredients and select items that you can have. Though there will be many things you can't eat, there will be items you can. Besides, you can always bring your own foods, which is probably less risky.
So there it is: some hopefully practical advice on how to set up and maintain a gluten-free home and life. Your mileage may vary, but I believe this will start as a reasonable baseline.
I personally found this information both helpful and reassuring; I hope it helps someone else out there as well.
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