How Careful Are You?

[JustAGirl79]

I'm newly diagnosed - positive blood work two months ago and an endoscopy yesterday. The Dr. took a couple of samples for testing, but also indicated she could see the damage and it's consistent with celiac. My follow-up with her is in a month, but in the meantime, I'm trying to figure things out. I asked her how careful do I have to be and didn't get a clear answer.

I understand I'm no longer able to eat plates of wheat pasta, but if I ingest a crumb of toast because I used a toaster that had regular bread in it, how bad is it?

Ignore the fact that not following the diet carefully might make me feel horrible - how much damage could I/would I do if I'm not careful enough with cross contamination, etc.? It's the issue of cross contamination that has me questioning if I can do this. My DH and my 19-month son are not gluten-free, so I do not live in a gluten-free household and I honestly don't know how I'll be able to avoid contamination.

Is anyone here comfortable with not being *that* careful about things like cross contamination? I honestly don't think eating a crumb of bread will make me feel sick, but what could it mean to my long-term health and the condition of my digestive track?

Please don't flame me. It's not that I'm not taking this seriously - I am - but I also don't want to live my life in fear of a bread crumb.

[LDJofDenver]

I'm newly diagnosed - positive blood work two months ago and an endoscopy yesterday. The Dr. took a couple of samples for testing, but also indicated she could see the damage and it's consistent with celiac. My follow-up with her is in a month, but in the meantime, I'm trying to figure things out. I asked her how careful do I have to be and didn't get a clear answer.

I understand I'm no longer able to eat plates of wheat pasta, but if I ingest a crumb of toast because I used a toaster that had regular bread in it, how bad is it?

Ignore the fact that not following the diet carefully might make me feel horrible - how much damage could I/would I do if I'm not careful enough with cross contamination, etc.? It's the issue of cross contamination that has me questioning if I can do this. My DH and my 19-month son are not gluten-free, so I do not live in a gluten-free household and I honestly don't know how I'll be able to avoid contamination.

Is anyone here comfortable with not being *that* careful about things like cross contamination? I honestly don't think eating a crumb of bread will make me feel sick, but what could it mean to my long-term health and the condition of my digestive track?

Please don't flame me. It's not that I'm not taking this seriously - I am - but I also don't want to live my life in fear of a bread crumb.

I know what you're saying. But my understanding is that, once you're all healed, the occasional accidental gluten encounter doesn't send you back to square one. However, I'm sure you know that even if you don't have a reaction, damage is still being done to the intestines.

My house is not gluten free either, but we employ some safeguards (other than my washing my hands every time I handle cat food dishes, etc.! ) and pretty much have it down. I have my own toaster, cllander, and cutting board. I frequently just lay my cutting board down, or a paper towel, or a piece of wax paper, as a barrier on the counter when I'm making myself something. I also bought a package of bright orange round stickers and I affix one to "my" mayonnaise, mustard, etc. -- just so my husband sees it and either uses "other" product source or uses a clean knife and doesn't double dip anything with bread crumbs into my mayo, etc. If we buy fruit that both will eat, we automatically pull out "my" colander to use for washing the fruit. (I bought a red cutting board, and a brightly colored colander - so it's like a flag that, "hey, this is gluten free")

I've been diagnosed less than a year and I think it's safe to say we really don't even think about it anymore, when we're in the kitchen putting something together.

Once you get gluten out of your system and are healing I think you'll find that even small encounters with gluten will bite you. Most celiacs become more sensitive to it once "clean."

You'll also have to be mindful of types of lotions, etc., that you may be applying to your little one. Yes, I know, big sigh. But it will be on your hands, and your hands pick up a bite of fruit or something, and next thing you know the lotion on your hands is in your mouth.

I would just say don't panic, it's all new. It seems quite overwhelming at first, but you'll get it down. And I think your body will let you know, as time goes by, just how careful you have to be.

[tarnalberry]

it's about balancing the fear of that crumb every day, with the fear of 10 years being lost off your life. (10 years is the average reduction in lifespan for those who get 'contaminated' "often" - every two weeks or so.) you can't live in fear of your counter-tops; that would significantly affect your quality of life. but you can't live in fear of every possible consequence; that will also affect your quality of life.

so, avoid the risks you don't have to take - have your own condiments, toaster, non-stick/cast iron pans, wooden spoons, etc. and adapt around the risks you are willing to take - prepare your foods on your own plate, clean counters often, help teach your husband and kids how to be clean and tidy about their food.

and, it's really not as bad as it seems to just have the whole family eat gluten free when they eat together. some people do maintain a gluten-free house, and really, is your health and well-being so much to ask when family can go out for gluteny-goodness whenever they really want it? some people (myself included) do not maintain a strictly gluten free household, but there are distinct limitations on gluten eating (plate under any bread, he has his own cutting board and toaster as the only counterspace that can have gluten, his own shelf of granola bars, oatmeal, and cereal) and everything else is gluten free. (and my husband is a picky eater... it really is not abnormal in any way to simply choose foods that don't have gluten.)

you'll have to figure out your own response, and 'negotiate' with the family on the family approach to the situation. but find something that you can be comfortable with, without risking your health. even if you don't get symptoms every time, small amounts of gluten will initiate the auto-immune reaction that destroys your intestines (and can have wider, systemic effects), and that reaction, once started, can self-sustain for up to two weeks.

[zero]

I recommend that you read "Celiac Disease: A Hidden Epidemic" by Green and Jones. In it they mention that, at least in one study, consuming 30 mg or less of gluten in one day will not increase long term mortality but 100 mg is definitely too much. There is a lot of uncertainty in these numbers. I estimate there is about 30 mg of gluten in a pinch of flour. Which sounds easy to avoid except there can be gluten in supposedly gluten free foods due to cross contamination. So your goal should be zero because you will be consuming some anyway. Don't freak if you eat a crumb but your food preparation should be such that it is unlikely you will be eating crumbs. Follow up blood work will indicate how well you are doing. Just my opinion.

[stillclueless]

I'm newly diagnosed - positive blood work two months ago and an endoscopy yesterday. The Dr. took a couple of samples for testing, but also indicated she could see the damage and it's consistent with celiac. My follow-up with her is in a month, but in the meantime, I'm trying to figure things out. I asked her how careful do I have to be and didn't get a clear answer.

I understand I'm no longer able to eat plates of wheat pasta, but if I ingest a crumb of toast because I used a toaster that had regular bread in it, how bad is it?

Ignore the fact that not following the diet carefully might make me feel horrible - how much damage could I/would I do if I'm not careful enough with cross contamination, etc.? It's the issue of cross contamination that has me questioning if I can do this. My DH and my 19-month son are not gluten-free, so I do not live in a gluten-free household and I honestly don't know how I'll be able to avoid contamination.

Is anyone here comfortable with not being *that* careful about things like cross contamination? I honestly don't think eating a crumb of bread will make me feel sick, but what could it mean to my long-term health and the condition of my digestive track?

Please don't flame me. It's not that I'm not taking this seriously - I am - but I also don't want to live my life in fear of a bread crumb.

Hi. I was diagnosed three years ago and did the "best I could" then was blessed with a coworker who was more skilled than I. No wonder I hadn't seen significant improvement! She taught me that yes, cross-contamination is significant. I have my own toaster, the kitchen counters are clean, and the rest of the family knows to put bread on a plate and keep their stuff on one side of the sink - I keep my stuff - toaster, etc., on the other side of the counter. We do not all eat gluten-free, it's too expensive. I will make spaghetti sauce and I take my share first and put it on my noodles. Then the others can have at it and put it on their noodles. It really wasn't that hard once we figured out the logic to it. For Christmas and Thanksgiving, for example, I do the cooking. That way things are "clean" for me, but I put food on my plate first and they keep their rolls, etc. on a hutch or counter beside and not on the table. Yes, you should fear the bread crumb, but it's really a pretty easy monster to overcome. My stepdaughter put a hamburger bun in my toaster by mistake two days ago. That toaster is "toast" and I own a new one today. You can do it, it won't be too hard, and the effort is worth it. Honest.

[GFinDC]

I understand I'm no longer able to eat plates of wheat pasta, but if I ingest a crumb of toast because I used a toaster that had regular bread in it, how bad is it?

Is anyone here comfortable with not being *that* careful about things like cross contamination? I honestly don't think eating a crumb of bread will make me feel sick, but what could it mean to my long-term health and the condition of my digestive track?

Please don't flame me. It's not that I'm not taking this seriously - I am - but I also don't want to live my life in fear of a bread crumb.

Oh boy, where did I leave that darn flame thrower? Ah well, I think it's broke anyway.

When I started gluten-free, I didn't think little bits like a crumb would bother me either. Shoot, I'd been eating gluten for decades after all. But I found that after I was off it for a while I really became sensitive to small amounts. Actually the toaster thing got me once. End of the line for the toaster.

But I am not super worried about it. I try to be careful, and make almost all my food at home from scratch. I do have a cat that is a bit particular about her food also. Her food has wheat in it so I just wash my hands every time I get her food or a treat. She probably wishes I would wash my hands before getting her a treat, but that's life.

I can't say how much damage a little cross contamination would do to you medically. I do know it makes me feel crappy when it happens. Ain't fun. I do think it is important to your healing to stay as gluten-free as possible though. Bearing in mind that it is real easy to make mistakes as a newbie to the diet. Avoiding most processed foods makes it easier to avoid gluten at the beginning.

[GottaSki]

Much more careful at three months than I was at three weeks! As you'll read on many posts -- as your body becomes gluten-free, very, very small amount of gluten can make you sick -- this was a concept that I understood, but my brain didn't really understand until I was gluten-free for some time. Your body will probably let you know within a short time too.

While we were careful at the start, we've become much more so. My husband while always on board was more than a bit sceptical of the whole separate toaster/cutting board theory at first. We've all learned together and the last thing he wants is me sick...not fun to live with a sickee.

Welcome and good luck!

[Puddy]

My house isn't gluten free either. I'm the only one in a family of 5 that has Celiac Disease. I will admit I was a little paranoid the first couple months after diagnosis, but it does become easier with time. I, too, have safeguards in the kitchen... my own drawer in the fridge with my condiments, my own counter in the kitchen that no one is allowed to put anything on so it's virtually crumb free. I cook all the dinners and except for the occassional hamburger bun or Italian bread, they are 100% gluten free. There is no gluten flour in the house. My one daughter loves to bake, but we just use gluten free ingredients now. And, of course, I have a new colander, cutting board and my own toaster, The only other bit of advice I can give you is to wash your hands before you touch anything that is going in your mouth. I know my family is touching bread and cereal, etc. and then opening the fridge door and microwave so I'm living in gluten minefield....LOL....but I just wash my hands after I've opened that door and am making my wrap. It becomes second nature after a while. I went through a ton of paper towels that first month! But now I just get a clean hand towel out every time I'm cooking, throw it over my shoulder and voila, I'm ready.

I use gluten free shampoo and hand lotion because you have a pretty good chance of getting them in your mouth and anything I use on my face is gluten free, also, i.e. lotion, foundation, lip gloss.

Fortunately or unfortunately, depending on how you look at it, I do not get any symptoms when I ingest gluten. They discovered mine because I was anemic, lactose intolerant and had osteoporsis. So it is virtually impossible for me to know when I've been cross contaminated. But I do have my blood work done every six months and after one year my gastro doctor told me "If I didn't know you had Celiac Disease, I wouldn't know you had Celiac Disease. Your numbers are perfectly normal". Living in a mixed house can be done, it just takes some common sense and a little bit of practice.

Good Luck!

[FMcGee]

Ooo, cutting boards. I am such a maroon. I've been using our regular old plastic cutting boards (and plastic mixing/slotted spoons and spatulas), which have all gone through the dishwasher but which have all definitely been glutened. Am I potentially glutening myself?

[Korwyn]

I'm newly diagnosed - positive blood work two months ago and an endoscopy yesterday. The Dr. took a couple of samples for testing, but also indicated she could see the damage and it's consistent with celiac. My follow-up with her is in a month, but in the meantime, I'm trying to figure things out. I asked her how careful do I have to be and didn't get a clear answer.

I understand I'm no longer able to eat plates of wheat pasta, but if I ingest a crumb of toast because I used a toaster that had regular bread in it, how bad is it?

Ignore the fact that not following the diet carefully might make me feel horrible - how much damage could I/would I do if I'm not careful enough with cross contamination, etc.? It's the issue of cross contamination that has me questioning if I can do this. My DH and my 19-month son are not gluten-free, so I do not live in a gluten-free household and I honestly don't know how I'll be able to avoid contamination.

Is anyone here comfortable with not being *that* careful about things like cross contamination? I honestly don't think eating a crumb of bread will make me feel sick, but what could it mean to my long-term health and the condition of my digestive track?

Please don't flame me. It's not that I'm not taking this seriously - I am - but I also don't want to live my life in fear of a bread crumb.

Hiya

I'm glad that you are on the road to recovery. I can only speak for myself, but I have to be extremely careful of cross-contamination. I learned this the hard way. Also after doing a lot of research, one of the things that I've learned is that some people react to amounts as small as 5 mg of gluten protein. To put this in perspective, there are 454 grams to a US pound. A paper clip is roughly a gram. If you straighten it out and divide it into 20 equal sized pieces, each piece is approximately 500 mg. 10 mg is considered "safe" by many, but a lot of GI and celiac disease can't handle that much.

So to answer your question, yes a crumb may be something to worry about. My wife and I are trying to resolve this issue ourselves right now (I was diagnosed two months ago and have been gluten-free since April 24). I'm probably going to wind up with a set of shelves in our pantry and utility room and some cooking implements (such as wooden spoons, etc) that are all clearly marked gluten-free as well as a counter space that is strictly mine. We had to purchase a second cutting board as well and I'll wind up getting another toaster too. At the moment it isn't a huge issue since my diet right now is mostly meat, eggs, Quiona, nuts, fresh veggies, and fresh fruits, but eventually as my system heals I hope I'll be able to reintroduce some of the other carbs and grains.

Corwin

*edited to fix two tyops.

[GottaSki]

so I'm living in gluten minefield....LOL....but I just wash my hands after I've opened that door and am making my wrap. It becomes second nature after a while. I went through a ton of paper towels that first month! But now I just get a clean hand towel out every time I'm cooking, throw it over my shoulder and voila, I'm ready.

Love this...I've been feeling guilty about all the paper towel trees I've been killing lately! A stack of fresh towels is a great plan.

Thanks!