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Foreignlady

Help understanding the seriousness of cross contamination issues

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Foreignlady-

 As it says in the Hitckhiker's Guide, "Don't Panic". Yes, you are right to be concerned. But unlike a shellfish or peanut allergy, one crumb of gluten will not be fatal. There is plenty of literature around these days, you can get a good start before the appointments.

Think of celiac (gluten response) as something between "too much sunlight" and "radiation poisoning". You get burned a little, it hurts, you heal and recover. You get burned way too much, way too often, and in one case you get skin cancers, in the other you just die. In other words, SOME exposure is certainly tolerable, it is the repeated and excess exposure that is going to do permanent damage.

So when you do miss some gluten--and you will, unless you stick to water and rice--you learn from it and try not to do it again. Separate kitchen tools & area are good, yes. You will find gluten is now used in all sorts of processed foods including tuna salad and chopped liver, as an adulterant or thickener not just a flavor element. It will take time, and there will be mistakes, and they will not be anywhere near fatal. Don't Panic.

You may also want to look into that concept of a gluten-free household. Not entirely--but there are now SO many gluten-free products and recipes, that you can consider making many things gluten-free for everyone, as an extra safety step. For instance, in the US Progresso makes many soups prominently labelled "Gluten Free". They just use tapioca flour or rice starch or corn starch, instead of wheat flour, as an ingredient. In contract, Campbell's seems to use wheat flour for everything. So you buy the "safe" brand, at the same price, and no one really can tell the difference.

That's not to say the other kids can't enjoy regular bread and cake, etc., just to say that as you come up to speed (and yes it can feel overwhelming) there are many choices that can just help get the gluten out of the house, without driving everyone crazy.

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I would very much advise you to have the entire family go glutenfree. It will be significantly easier to avoid cross contamination that way.

I've noticed for me personally that amount matters. The reaction seems pretty much the same whether I get in a number of crumbs or an entire sandwich, but there is a clear difference between eating something tha has traces and getting several crumbs in. So if your daughter is similar, any little bit extra you can take out will help.

At my home we have foods that we're certain to be glutenfree (most meat, most veggies and fruit, certified products) while we also have food items that I cannot eat, but the rest of the family can. These items do not contain gluten, but might be contaminated. Examples are salted potato chips, nuts, etc. If I get traces of those in, it generally doesn't bother me. Even if I would actually eat them, I usually only get a milder reaction (f.e. light nausea instead of heavy nausea or throwing up).

For cleaning: as far as I know vinegar (or any other acid) helps to break down the bonds between different gluten molecules. This does not render them inactive (it only acts on the ones that don't make you sick anyways), but it stops them from being so sticky so you can clean them off surfaces more easily. Think about how hard it is to get wet flour of a table, it goes easier with vinegar. Note that this will not be sufficient for things like cutting boards which have many small gouges in them. It's mainly a help for hard, flat surfaces such as tables. I still recommend having a set of utensils and plates that never even touch gluten. Cleaning the table better helps avoid getting miniscule crumbs on hands which you then end up ingesting anyway.

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Well, there certainly is no lack of ideas and suggestions on how to deal with crosscontamination, but it occurred to me that I can't very well transform my home into a gluten-free zone until the other kids are tested, since they only ever eat at home (not in school or daycare) and would need to keep eating gluten until a biopsy confirmation. 

In any case, I have read a lot about the psychological impacts of this diagnosis and I don't want my daughter or myself to become hypervigilant and anxious and afraid of food. I think that would be more harmful than the accidental trace amount exposure once in a while. We have taken the appropriate precautions, followed advice found here and elsewhere, make most shared meals when my daughter is home gluten-free, and trying to relax about it. If that makes me a bad mom according to some who shall remain unnamed, so be it. 

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11 minutes ago, Foreignlady said:

Well, there certainly is no lack of ideas and suggestions on how to deal with crosscontamination, but it occurred to me that I can't very well transform my home into a gluten-free zone until the other kids are tested, since they only ever eat at home (not in school or daycare) and would need to keep eating gluten until a biopsy confirmation. 

 

There are folks that are quite successful at living in a shared home.  If the other little ones need to keep eating gluten it doesn't have to be a lot. Keeping some gluten bread or cereal around for them isn't going to be an issue as long as crumbs are keep under control. Just be sure that if you give the gluten eating kids something like cookies that your gluten free little one will have a favorite treat also.  I am sure you are doing a great job with keeping her safe.

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Hi Forgeinlady,

I live in a shared home with gluten eaters for several years.  I get along fine.  I have a small dorm size refrig that I keep my food in.  I also keep a set of gluten-free only pots and pans to use.  I keep some silverware and utensils in a container just for me to use.   I also have my own toaster.  I rinse dishes off with water before using them.  So far all this has worked fine.   With kids it could be harder to keep them from contaminating things, but maybe not.  If your daughter has her own dishes (different color) etc it would help.  But it is quote possible to live in a shared house and use  a shared kitchen.  The hardest thing might be remembering the contamination issue.  But you'll get used to the gluten-free thing in time.  It'll be fine. 

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On 2/23/2018 at 11:17 AM, Foreignlady said:

As for testing the rest of the kids, our pediatrician didn't think we should screen the siblings yet as they are asymptomatic, (1.5 y.o. twins, 3.5 y.o.) and are all 97th percentile + in growth charts. 

[...]

In any case, I have read a lot about the psychological impacts of this diagnosis and I don't want my daughter or myself to become hypervigilant and anxious and afraid of food. I think that would be more harmful than the accidental trace amount exposure once in a while. We have taken the appropriate precautions, followed advice found here and elsewhere, make most shared meals when my daughter is home gluten-free, and trying to relax about it. If that makes me a bad mom according to some who shall remain unnamed, so be it. 

FWIW, our ped GI was firm that all first-degree relatives needed to be screened, whether or not they were symptomatic. (Our family is tall too - in fact, our kids' continued growth delayed their diagnosis because their ped took it as an indicator that all was well and didn't think of celiac - it was a psychologist who recommended screening in our case.) Also, celiac can be asymptomatic.  

I read several articles about the recent study about hypervigilance (keep meaning to look up the study itself, but I ran into a paywall) and found it very frustrating, because as far as I can tell they didn't take the obvious step of assessing the extent to which an individual's severity of reaction affected his/her level of vigilance.

This disease seems to affect everyone differently. If all mine got were tummy aches, we wouldn't be terribly strict (boy, don't I wish that were the case?). Unfortunately, both of mine react psychologically, as well as physically, to even minor glutenings: in addition to a few days of explosive diarrhea (= no school), they manifest irritability, anxiety, depression, and (for one kid), have experienced suicidal ideation and self-harm.

So, yeah, we're vigilant, but I wouldn't say it's "hyper" vigilance.

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Hi Foreignlady!  I did not have a chance to read all of the many responses you've received (also a mother of 4 young kids), but would like to share our story with you. 

 

Three years ago, my oldest was diagnosed with celiac at age 4  1/2.  Her (then) 3 year old brother was also diagnosed after we screened the rest of the family (he had no symptoms).  After he was also diagnosed, we also screened our 1.5 year old (she was negative).  I felt crazy with seeing gluten (crumbs) EVERYWHERE!  I was really anxious about it all.  We chose to change our entire house into a gluten free household.  I know it's a personal preference and what works for your family, but I am much more at ease doing it that way and have much less anxiety.  Initially, we jumped at all of the "gluten free" options out there, but have learned to focus mostly on the naturally gluten free things to make it much more affordable.  We have meat, vegetables, fruit, potatoes, rice, chex cereal for breading on meat, larabars and popcorn for treats/snacks, etc.  (I could give you a huge list of our staples if you are interested!)  It seems like a lot of extra work at first, but it's second nature now and really not that much more work.  We almost never eat out and were even able to do a 5 day road trip using a big cooler and grocery stops along the way!  We've learned to "eat out" by picking up meat, cheese, fruit, and some veggies at the grocery... it works! 

More of our story involves the fact that our oldest has had an elevated TTG that doesn't seem to be responding to our strictly gluten free lifestyle, so we are even more cautious of the cross-contamination issue.  We keep telling ourselves that we may relax a bit once it's down to "normal" but we haven't gotten there yet.  

Good luck with this journey!  We kept hearing the the first year is the hardest and then you adapt- we found this to be very true!  It is just our road in life and we will make the best of it!  I hope you are able to find the help and support you need to navigate this road- either here or in your community!

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