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covsooze

Please Convince Me!

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OK, so I've been gluten-free for a month now and have been very strict. I've got myself a new toaster for home and work and new breadboard and wooden spoon. But I think I'm probably not being as careful as some people here with cleaning, kissing DH after he's eaten (!), haven't bought new pans etc So, how important is it to avoid every tiny miniscule of gluten? Is there evidence to back up the need to have a separate pan etc? I guess coz I don't get obvious symptoms from just having a crumb of gluten, I need a bit of convincing as it's such hard work to deal with eliminating gluten on this level.

I am trying to avoid dairy as well. I haven't been tested for cassein intolerance but am pretty sure from my own reaction to foods that I'm lactose intolerant. What I'm not clear on from my research here is whether I need to be as meticulous with dairy as gluten. eg my gravy powder's got lactose in it, do I need to avoid that?

Thanks!

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Your casual attitude is pretty common for people who are first diagnosed with Celiac. Heck, I kind of took the whole thing lying down when I was first diagnosed. But, because I was not given any information on the disease by my doctor (he just said I had to avoid gluten, end of story), I set about doing my own research. So while I happily picked croutons off my salad and then ate the salad, and used the same butter dish as the rest of my toast-loving family, and ate my quiche down to the wheat-based pastry shell (leaving the shell on my plate, and feeling very disciplined about it), I kept reading.

Here's the method that convinced me, and that to this day, keeps me as scrupulously gluten-free as humanly possible:

try doing some reading on the medical journals regarding celiac disease, and how even small bits of gluten have been found to initiate damage in the mucosal lining of the intestine. Read up on how this damage continues to occur, regardless of whether or not symptoms are present. Then read up on what sorts of cancers can be caused if this damage is allowed to continue over a long period of time. Then read up on those cancers and check out if any treatments are available for them.

Hope this helps,

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I used to use the same pans as my family, until I spent a month sick because of it. Now I have separate pans, just for me. Other than that, I cannot convince you, you will have to try it and see for yourself.

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Thank you! Do i need a separate colander and grater given that they go in the dishwasher which cleans really well? What about cutlery? Is it just wooden stuff and pans that I need to be concerned about? I'm OK with separate spreads etc, but am not clear as to what cookery equipment and utensils are a problem to share. Thanks for your help - this isn't the sort of info that drs tend to give you...

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How long were you on new pans / utensils etc before you noticed a difference?

I have 2 room mates who are non-celiac and am sharing their cooking/eating equipment. My major symptoms have started to go away but joint problems, low energy and brain fog are still around. I thought I just hadn't fully recovered, but maybe it's all due to trace amounts? If I start a trial today, I'm wondering when I can I expect (conservatively) to notice a difference?

Thanks in advance,

J

I used to use the same pans as my family, until I spent a month sick because of it. Now I have separate pans, just for me. Other than that, I cannot convince you, you will have to try it and see for yourself.

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Scott (Administrater) posted sometime back that we did not have to get new pots and pans as long as they were thourougly (sp) washed. The only 2 pans I was concerned about were my teflon coated ones and they were relatively new at diagnosis. So, they had minimal scratches and I put them in the dishwasher once to make absolutely sure that every nook and cranny was cleaned. We don't have any gluten flours or pasta in this house, so all my utensils like colanders are fine. We only have bread (in a separate container), his snacks and he even has his own butter (so he does not cross contaminate). We also have him make his sandwiches on a separate part of the counter so that I don't pick up one of his crumbs. I can get sick from one crumb as we have found out. Because you have roommates, I think you should discuss the counter space. Also do not use their toasters. I have my own.

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Along the same lines ... I've been on the diet for about a year, but it took a long time to really find all the gluten in my life. I've just changed most of my makeup, shampoo, soap, etc.

But, how about laundry and diswashing detergents? Do these need to be gluten free too?

I still feel like I'm getting a bit of gluten, but I have no idea what it's in. My kitchen is mostly gluten free too and my boyfriend is very careful about cross contamination.

S

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As a newly diagnosed person I have a few questions regarding the same subject. (Sorry...I don't mean to hijack the thread)

I was dignosed from a blood test. I did have a biopsy done and it came back showing no damage. My doctor is sending out the biopsy to another pathologist ( one who has a sub specialty in GI pathology) for a second opinion.

I have been gluten free for about a week now and am starting to feel so much better already.

My question is this: Since my biopsy has shown no damage (so far...before 2nd opinion), Is it safe to assume that cross contamintion issues may not affect me? Honestly, I am still so confused.

Can it be that there are different degrees of severity of Celiac Disease and maye mine is a mild case...if there is such a thing?

Is it possible that even if I am gluten free but not so strict with cross contamination issues that I could develop damage in the future, even if there is none now?

Thanks everyone. This board has been a wealth of information and support for me. I am so happy to have found it. :D

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I bought a new toaster and new non-stick pans (the old ones were scratched). Other than that I gave everything a good washing and cleaned up the drawers. I am careful about kissing my dh after he eats or drinks beer. I have seperate condiments that are clearly marked to avoid cc from double dipping. I also changed some make up, shampoo and lotion after being glutened by my lotion. I am careful and have avoided being sick at home. Keep in mind that you may feel bad for awhile after going gluten-free. I was gluten-free for about 6 months before I started to feel good. I have recently been able to add dairy back into my diet (it will be a year in April). In the end you will need to do this for yourself. Could you do this for your family? For the sake of seeing old age? Figure out what can motivate you!

Hez

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Lori, One of my favorite analogies of Celiac is pregnancy. Two women might both be pregnant but react very differently. One might be super cute, have no problems, and glow. Another might be hunched over the toilet for 9 miserable months. Either way, the women are still pregnant.

It is similar to Celiac. You can't be a little bit Celiac (or a little bit pregnant, haha). Now people might have different symptoms (as I'm sure you've learned by reading on this board), different reaction levels, etc....but the bottom line is gluten is bad, bad, bad for us all. Many Celiacs are "silent" Celiacs----NO symptoms whatsoever. That doesn't mean that they have no damage, or that people with worse symptoms necessarily have "more" damage.

Hope this helps a little bit.

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I guess the pregnancy analogy puts it into a perspective I understand a little better.

It just still seems so overwhelming and confusing.

It's this statement that I can't quite grasp:

try doing some reading on the medical journals regarding celiac disease, and how even small bits of gluten have been found to initiate damage in the mucosal lining of the intestine. Read up on how this damage continues to occur, regardless of whether or not symptoms are present. Then read up on what sorts of cancers can be caused if this damage is allowed to continue over a long period of time. Then read up on those cancers and check out if any treatments are available for them.

For my specific case , after a biposy, the doctor says I have no damage- So If I have been ingesting gluten ( in large amounts) for all these years but show no damage, could just a miniscule cross contamination cause damage? I know it can still cause symptoms for some people, but what about damage where there was none before?

If my symptoms are under control, which they are becoming more and more since I cut out the gluten, do I need to worry about cross contamination?

So is this the bottom line?

Regardless of the amount of damage,even if there is none at this point, avoid cross contamination.

Regardless of severity of symptoms, if any, avoid cross contamination

I really am not trying to be difficult or stubborn, I just want to know what's best for me.

I'd like to be symptom free and remain damage free...Thats my goal.

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For my specific case , after a biposy, the doctor says I have no damage- So If I have been ingesting gluten ( in large amounts) for all these years but show no damage, could just a miniscule cross contamination cause damage? I know it can still cause symptoms for some people, but what about damage where there was none before?

If my symptoms are under control, which they are becoming more and more since I cut out the gluten, do I need to worry about cross contamination?

Everyone has different degrees of sensitivity to gluten. It may be that you are not that sensitive to gluten and don't have to be as careful as most other celiacs. If you are still finding that you have no symptoms and your blood tests look okay, I don't see any reason to be that vigilant just because a lot of other people are. Personally, I am pretty careful...but I only became so after glutening myself repeatedly.

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I pretty much agree with Celiacruz about this. I just wanted to add that you'll probably discover for yourself, over time, how strict you need to be. People often become more sensitive to gluten after being gluten free for a while. You might end up wanting to avoid cross contamination simply because it makes you feel so bad. Or not. I would start sort of gradually looking into all possible gluten sources, and see how it goes.

I know it's kinda the party line here that gluten is bad bad bad but some people completely ignore the diet, live to be 90, and manage to live with their symptoms. I wouldn't advise anyone to do that, but in the end it's very much a case of everyone needs to weigh the risks for themselves.

Pauliina

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I am a silent celiac. My biopsy showed massive amounts of damage. Unfortunately, I have no idea how long it took to get that way. Since I have no way of knowing when I've been glutened, I have to be as diligent as possible. For me, it's not worth the time and trouble to figure out how sensitive I am. I hope you can.

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lori, my girls did not have any damage show when they had biopsies---the ped gi did not even do a biopsy on the youngest one. even though the biopsies did not show any damage, he said that they probably do have damage. celiac can be very patchy and an endoscope can only get about 6 feet into the small intestine. i think that having blood tests done on a regular basis is probably the best way to tell how gluten free you are managing to be since you don't get obvious symptoms. i think it would also tell you if you are being diligent enough about cross-contamination. we try to follow the diet closely at our house, even though i wonder about the same questions you have----i'm just taking our ped gi's word (and everyone on here) that we need to not cheat on purpose----but it will probably happen by accident from time to time.

christine

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Ok... I'm convinced!

I think this is finally making sense to me! Thank you everyone for your responses. It helps so much to have such a supportive, informed group to bounce questions off.

I think I will see what happens with my next blood test and go from there. I was feeling really good earlier in the week but have had some "bathroom issues" last night and today. Maybe I am more sensitive than I think? My biopsy was sent off for a 2nd opinion so I am not 100% positive there is no damage yet... I was just hoping the first doctor was right.

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Guest nini

Lori, you said that the blood test was positive but the biopsy did not find damage right? and this is making you doubt the neccessity of being hypervigilant about microscopic amounts of gluten? Just want to make sure I'm understanding you correctly... If I am, my thought is, the GI didn't take enough samples OR completely missed the damaged area. If you have a positive blood test, I'm pretty sure there is some damaged villi in there somewhere, but with all the feet of intestines circling around in there, it's easy to miss the damage. Also, many labs are not real good at recognizing early damage in your villi... So, you may have been one of the lucky ones to get dx'ed before your villi are completely gone. But if you ingest even the smallest amt. of gluten it does increase your risk of developing certain cancers.

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Nini

Yes, you are correct in your assesment. My doctor is currently having a GI specific pathologist read the biopsy for a 2nd opinion. I guess it makes sense that there could be damage considering my blood test results. I was just hoping to be lucky and not have any damage.

I'm going to be vigilant concerning cross contamination. Here comes the gluten police! Very funny since that is my job for real! (I crack myself up sometimes :D )

It seems like the best way to proceed at this point.

I'm only hurting myself if I am armed with the knowledge of what to do to stay healthy and don't do it.

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Guest nini

I'm glad you are going to be vigilant...

I try so hard to be vigilant, but even with my best efforts I still make mistakes, so try to not be so hard on yourself if you make a mistake. Just do better the next time!

good luck with it all.

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When my biopsy was done, damage was patchy. I had gone gluten-free in Feb, and was tested in Sept. If the GI had not been using a viewing scope to look for ulcers, it would have been missed entirely. I understand from some of the posts that some GIs don't look, they just take random samples. That could be why you showed no damage.

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I'm convinced too...we went out for a meal at the weekend and I was glutened, even though there was no 'deliberate' gluten in any of the food :angry: I think the one thing I need to do is buy a couple of new pans, coz ours are very scratched and old (allbeit that we wash them in the dishwasher, so they probably get a lot cleaner than if I did them by hand ;) )

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I know it's kinda the party line here that gluten is bad bad bad but some people completely ignore the diet, live to be 90, and manage to live with their symptoms. I wouldn't advise anyone to do that, but in the end it's very much a case of everyone needs to weigh the risks for themselves.

Pauliina

I've never heard of untreated celiacs living to 90. Where did you hear this? Everythiong I have seen and read said they died much earlier than that, of terrible illnesses.

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I've heard of people getting diagnosed with Celiac at an old age but I never heard of someone who got diagnosed early on and lived to 90 all the while happily eating gluten. Dont most people who are symptomatic but ignore the diet end up with autoimmune diseases, osteoporosis, etc.?

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Guest nini

there is a lady that I met at the Health Food store I shop at... she was in her eighties when she was dx'ed and poor thing is so frail, she's also terrified to eat anything... I've spent hours literally walking around the store with her showing her things that are safe to eat. She's really sweet, but it's so hard for her to change a lifetiime of eating habits... The point is, her health has really suffered by her going this long without a dx...

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covsooze, yes, it is a good idea to get a new colander. When you strain noodles it's almost impossible to get all the stuff out of a colander, even in the dishwasher, since it's so sticky. Also, test yourself for what milk products do to you specifically. Completely avoid mild products for at least a week (includen small amounts in gravy etc.), and then purposely have milk one day, wait for two days what symptoms you get (if any), then try cheese, wait another two days, do the same with butter, yogourt, ice cream etc. You wait at least a couple of days in between, because often you can get a delayed reaction.

I find with some things I'll get some symptoms within minutes, but more symptoms show up over the course of a couple of days. I'd miss those if I would try something else too soon, and might attribute the reaction to the wrong item.

Somebody (I can't seem to find it again) was saying, that he/she still has joint pains and some other issue. That could be from something other than gluten. I find that all lectins cause joint pains in me, not just gluten. And that general, awful body pain is caused by salicylates (see the links in my signature to find out more).

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