Cross Contamination

[willabec]

could a small amount of cross contamination, using the same toaster,using the same butter, same colander, once in a while taking a bite of pizza, etc. cause my villi to still be flattened? (not sure to what degree they are flattened though) thanks!

[dilettantesteph]

Yes. Especially the bite of pizza.

[Emilushka]

The problem with Celiac is that you're talking about an immune response (because it's an autoimmune disorder) which causes a pretty large reaction to even a small amount of the offending substance. Think of it this way: if you have hay fever, even sniffing a little bit of pollen by having a bouquet nearby can cause a lot of sniffles, coughs, etc. It's a much bigger reaction than what you'd think would be necessary, but this is your body trying to fight off the bad guys and save you. Normally, being super-aggressive is a good thing. You're exposed to TONS of viruses, bacteria, and other "bad guys" every single day and you only rarely get sick from them. That's thanks to your immune system. Unfortunately, when it turns on you (hence the "autoimmune" label) it also does a good job. And anything you do to trigger it will cause it to do a very good job of beating your body up. Even crumbs. Even a very diluted amount of wheat.

[ravenwoodglass]

The problem with Celiac is that you're talking about an immune response (because it's an autoimmune disorder) which causes a pretty large reaction to even a small amount of the offending substance. Think of it this way: if you have hay fever, even sniffing a little bit of pollen by having a bouquet nearby can cause a lot of sniffles, coughs, etc. It's a much bigger reaction than what you'd think would be necessary, but this is your body trying to fight off the bad guys and save you. Normally, being super-aggressive is a good thing. You're exposed to TONS of viruses, bacteria, and other "bad guys" every single day and you only rarely get sick from them. That's thanks to your immune system. Unfortunately, when it turns on you (hence the "autoimmune" label) it also does a good job. And anything you do to trigger it will cause it to do a very good job of beating your body up. Even crumbs. Even a very diluted amount of wheat.

Very well put. CC is a very real risk for us. Once the antibodies react, and they will react to even small amounts, they will impact your organs. Unfortunately we do need to be strict. By the way there are some really good premade pizza shells, I like Kinnickkinnick the best as they are 4 to a package for only about 9 bucks. I always keep them on hand for pizza cravings.

[Skylark]

could a small amount of cross contamination, using the same toaster,using the same butter, same colander, once in a while taking a bite of pizza, etc. cause my villi to still be flattened? (not sure to what degree they are flattened though) thanks!

Yes, all this is enough to keep your villi flattened. You are not describing minor cross-contamination here, but rather a lot of gluten in celiac terms. The butter WILL have crumbs, vertical toasters WILL have crumbs, colanders are almost impossible to really clean well, and the bite of pizza is guaranteed to cause problems. Even eating the toppings off regular pizza is a problem, because of all the flour in the bakers hands and in the air when the pizza is made.

You need your own colander, your own condiments, and a zero tolerance policy for things like bites of pizza.

[willabec]

Yes, all this is enough to keep your villi flattened. You are not describing minor cross-contamination here, but rather a lot of gluten in celiac terms. The butter WILL have crumbs, vertical toasters WILL have crumbs, colanders are almost impossible to really clean well, and the bite of pizza is guaranteed to cause problems. Even eating the toppings off regular pizza is a problem, because of all the flour in the bakers hands and in the air when the pizza is made.

You need your own colander, your own condiments, and a zero tolerance policy for things like bites of pizza.

yeah...i know... i really did not think all of that would keep the villi flattened...dr. did not this so either...but i will keep a better eye on all of this and i assume dr. will do another endoscopy at some point and we will see if it's any better. i am hoping in a strange way that my villi being flattened (to whatever degree) is because of this cross contamination and not to my body rejecting the diet...refractory sprue...you know?

[mushroom]

I don't think you can start talking about refractory sprue when you are not actually following the gluten free diet. Give it a try

[willabec]

I don't think you can start talking about refractory sprue when you are not actually following the gluten free diet. Give it a try

well, that is the diagnosis my dr. gave me....i told him about my few bites of pizza, etc. asked if he thought that would cause the villi to still be flattened and said no, he did not think so. i really did not think that little bit of "cheating" would either, but i guess so. thanks! i am going to be more vigilant in watching and asking about what i eat.

[ravenwoodglass]

well, that is the diagnosis my dr. gave me....i told him about my few bites of pizza, etc. asked if he thought that would cause the villi to still be flattened and said no, he did not think so. i really did not think that little bit of "cheating" would either, but i guess so. thanks! i am going to be more vigilant in watching and asking about what i eat.

Your doctor is not very knowledgeable about celiac. Refractory sprue is really quite rare. Wonder what drug company he has stock in.

[Emilushka]

Your doctor is not very knowledgeable about celiac. Refractory sprue is really quite rare. Wonder what drug company he has stock in.

Honestly, sometimes they're just idiots. Celiac's not a good drug company diagnosis ... he'd probably go with IBS and start pushing meds if he were a drug company drone.

But having seen some of the people who become doctors, they are sometimes just idiots. Plain, ordinary, should-have-stayed-home-instead-of-going-to-medical-school idiots.

[ravenwoodglass]

Honestly, sometimes they're just idiots. Celiac's not a good drug company diagnosis ... he'd probably go with IBS and start pushing meds if he were a drug company drone.

But having seen some of the people who become doctors, they are sometimes just idiots. Plain, ordinary, should-have-stayed-home-instead-of-going-to-medical-school idiots.

It is not unusual for the treatment of refractory celiac to be treated with medications. Steroid drugs and immunosuppresive being two of those used.

This is from one article. Sorry I couldn't give a link as it wouldn't work when added.

Budesonideinthe Treatment of Refractory Celiac Disease Pardeep Brar, M.D., 1 Susie Lee, M.D., 1 Suzanne Lewis, M.D., 1 Ikenna Egbuna, M.D., 1 Govind Bhagat, M.D., 2 and Peter H.R. Green, M.D. 1 Departmentsof1 Medicine and2 Surgical Pathology, Columbia University College of Physicians and Surgeons, New York

Corticosteroids, either alone or in combination with other immunosuppressive drugs, are used in refractory patients, especially those with severe persistent or recurrent symptoms despite being on astrict gluten-free diet

Open Original Shared Link

What is the treatment for refractory celiac disease?

The treatment of refractory celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, medications are used. Corticosteroids such as prednisone have been used successfully in treating some patients with refractory celiac disease. Immuno-suppressive drugs (medications that suppress a person's immune system) such as azathioprine and cyclosporine also have been used. (These drugs also are used in treating some types of cancer.) Corticosteroids and immunosuppressive drugs are potent medications with potentially serious side effects. Many patients with refractory celiac disease are malnourished and have weakened immune systems, and corticosteroids and immunosuppressive agents can further increase their risk of serious infections. Thus doctors experienced with treating celiac disease should monitor treatment of refractory celiac disease.

[GFinDC]

I don't know where you live, but if you are near a large city you could probably find a local celiac group nearby. That would be a good place to get recommendations for a doctor that is knowledgeable about celiac. You can also check the doctors board here.

[Emilushka]

It is not unusual for the treatment of refractory celiac to be treated with medications. Steroid drugs and immunosuppresive being two of those used.

This is from one article. Sorry I couldn't give a link as it wouldn't work when added.

Budesonideinthe Treatment of Refractory Celiac Disease Pardeep Brar, M.D., 1 Susie Lee, M.D., 1 Suzanne Lewis, M.D., 1 Ikenna Egbuna, M.D., 1 Govind Bhagat, M.D., 2 and Peter H.R. Green, M.D. 1 Departmentsof1 Medicine and2 Surgical Pathology, Columbia University College of Physicians and Surgeons, New York

Corticosteroids, either alone or in combination with other immunosuppressive drugs, are used in refractory patients, especially those with severe persistent or recurrent symptoms despite being on astrict gluten-free diet

Open Original Shared Link

What is the treatment for refractory celiac disease?

The treatment of refractory celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, medications are used. Corticosteroids such as prednisone have been used successfully in treating some patients with refractory celiac disease. Immuno-suppressive drugs (medications that suppress a person's immune system) such as azathioprine and cyclosporine also have been used. (These drugs also are used in treating some types of cancer.) Corticosteroids and immunosuppressive drugs are potent medications with potentially serious side effects. Many patients with refractory celiac disease are malnourished and have weakened immune systems, and corticosteroids and immunosuppressive agents can further increase their risk of serious infections. Thus doctors experienced with treating celiac disease should monitor treatment of refractory celiac disease.

Well, yeah. But you can't give drugs until you eliminate the gluten entirely. Steroids are also not terribly lucrative. Psych drugs and antibiotics and heart drugs are much better money-makers. Also Viagra.

[Skylark]

yeah...i know... i really did not think all of that would keep the villi flattened...dr. did not this so either...but i will keep a better eye on all of this and i assume dr. will do another endoscopy at some point and we will see if it's any better. i am hoping in a strange way that my villi being flattened (to whatever degree) is because of this cross contamination and not to my body rejecting the diet...refractory sprue...you know?

If you are suspecting refractory sprue, you need an absolutely clean diet. Refractory sprue is a serious health condition. Your doctor is absolutely wrong about bites of pizza and so forth, and it's been demonstrated in studies. Not only should you avoid that, but I'd suggest you avoid processed foods for a time and eat home-cooked meats, vegetables, rice, potatoes, and other foods that you can be certain are 100% gluten-free. For example, you can be certain there is no gluten in a whole potato you've scrubbed and baked, while you have no way of being certain about a bag of potato chips. Let the gluten-free breads and cookies become a rare treat, not a staple. There is a rising incidence of refractory celaic, and the suggestion in the recent study was because there is generally too much gluten in processed foods for many people with celiac disease.

[Skylark]

Honestly, sometimes they're just idiots. Celiac's not a good drug company diagnosis ... he'd probably go with IBS and start pushing meds if he were a drug company drone.

You act as if it's the doctor's fault, and not that of 99% of American patients who walk into a doctor's office wanting a pill. Lifestyle changes are the single hardest thing for doctors to ask Americans to do. Most would rather take pills than lose weight, quit smoking, eat a low-sodium diet, exercise, drink less alcohol, or any of the other recommendations doctors make regularly. You've seen how devastated people are here when they get a celiac diagnosis; lifelong dietary change is not something people like to put up with. There are always a lot of celiacs in studies who admit to cheating on the diet.

Now, admittedly the doctor who though OP has refractory sprue when she's eating bites of pizza was an idiot. I just take exception to the "drug company drone" idea because I have some friends who are doctors and they are immeasurably frustrated with the American lifestyle/diet and how sick it makes people. If you asked them what they would prefer to see people do, they would prefer to put away the prescription pad and see all their metabolic syndrome patients stop eating sugary junk foods and head for the gym. It just isn't going to happen.

[Emilushka]

You act as if it's the doctor's fault, and not that of 99% of American patients who walk into a doctor's office wanting a pill. Lifestyle changes are the single hardest thing for doctors to ask Americans to do. Most would rather take pills than lose weight, quit smoking, eat a low-sodium diet, exercise, drink less alcohol, or any of the other recommendations doctors make regularly. You've seen how devastated people are here when they get a celiac diagnosis; lifelong dietary change is not something people like to put up with. There are always a lot of celiacs in studies who admit to cheating on the diet.

Now, admittedly the doctor who though OP has refractory sprue when she's eating bites of pizza was an idiot. I just take exception to the "drug company drone" idea because I have some friends who are doctors and they are immeasurably frustrated with the American lifestyle/diet and how sick it makes people. If you asked them what they would prefer to see people do, they would prefer to put away the prescription pad and see all their metabolic syndrome patients stop eating sugary junk foods and head for the gym. It just isn't going to happen.

I'm 6 months away from being a doctor myself. There are drug company drone doctors, but my point is that the OP's doc just sounds like an idiot, not one of the drones.

But you're right in that the American public is really messed up in their expectations for what they want. People think that medical testing and procedures and medications are like menu options and get upset when they're either not justified or would have more risk than benefit. People want what they want and they want it now.

You're also right that people don't want to bother being healthy. And what it takes to be healthy is different for everyone - for some it's the standard stuff, for those of us with Celiac it's standard + gluten-free (and potentially other things cut out as well), for those of us with other specific medical concerns there are other challenges added in. But people don't want to be bothered with doing what they have to do, and when they face the consequences of their lifetime of decisions they want to be fixed and are angry when they can't be.

I just see the bad things on both sides and hadn't commented on both sides at the time ... but trust me. I know not all docs are bad. I actually know some pretty wonderful docs. But I also have seen some incredible drone-like behavior and I've heard about worse things than what I've seen. It can be bad.

[Skylark]

Fair enough.

[Emilushka]

Fair enough.

One of the biggest things I've learned in medical school is that people can really be wonderful and people can really, truly suck. It goes both ways. And that means docs, patients, family members, nurses, techs, janitors, clerks, translators, lab employees, everybody.

[Skylark]

One of the biggest things I've learned in medical school is that people can really be wonderful and people can really, truly suck. It goes both ways. And that means docs, patients, family members, nurses, techs, janitors, clerks, translators, lab employees, everybody.

Well, after your time around here I bet you're going to be one of the wonderful doctors!

[ravenwoodglass]

One of the biggest things I've learned in medical school is that people can really be wonderful and people can really, truly suck. It goes both ways. And that means docs, patients, family members, nurses, techs, janitors, clerks, translators, lab employees, everybody.

I agree completely. Unfortunately if you get one bad doctor who labels you that label seems to stick. Some doctors look at the records transferred and see 'IBS' or 'patient refuses to believe they are not depressed' and they don't look any farther. Hopefully you will be a doctor who makes your own judgements and looks and listens to your patients. I have a feeling you will be.

[Emilushka]

I agree completely. Unfortunately if you get one bad doctor who labels you that label seems to stick. Some doctors look at the records transferred and see 'IBS' or 'patient refuses to believe they are not depressed' and they don't look any farther. Hopefully you will be a doctor who makes your own judgements and looks and listens to your patients. I have a feeling you will be.

Yeah ... I hope so. I know the tendency to believe records instead of the patient, but a good doc will read the records, see if those diagnoses are justified by testing, and then talk to the patient and try to get the full story again from the patient's perspective. Info gets lost if you don't do ALL of those things.

But the best patients are the ones who come in with a folder. In that folder they have a list of symptoms in chronological order (including if/when they stopped), doc visits in chronological order, the medications they were given, what happened when they took them and why they stopped or continued them, the testing they received and the results, the plan ... all of that stuff helps the next doc because it shows that the patient cares and is organized and for the less ethical ones it shows that the patient won't forget or let the doc get away with half-assing it.

[mushroom]

But the best patients are the ones who come in with a folder. In that folder they have a list of symptoms in chronological order (including if/when they stopped), doc visits in chronological order, the medications they were given, what happened when they took them and why they stopped or continued them, the testing they received and the results, the plan ... all of that stuff helps the next doc because it shows that the patient cares and is organized and for the less ethical ones it shows that the patient won't forget or let the doc get away with half-assing it.

Yes, Emilushka, in an ideal world, this is the way it would happen. As one of the other posters on the forum captioned her thread, Btdt. What actually happens when you do this is that Dr. X rolls his eyes, (all those lab reports!!!, three pages of personal history she wants me to read!!! Dr. Blank told me this patient does that!!!, I don't have time for this!!!) so they go with what Dr. Blank says and ask you a couple of perfunctory questions designed to elicit information that matches their pre-formed opinion and then don't listen to the answers. You ask them if they have read the information you provided and they say, well of course they did, but you heard them remove your chart from the slot on the door 20 seconds before they entered the room and know this can't be true, so you take out your own copy and point them to some salient points, at least which produces no interest on the part of Dr. X. So it does not prevent him from half-assing it. And you mentally scratch him off your list and move on to the next doctor on your list, who will know you have been to Dr. Blank, and now Dr. X ( and there are now more records to read!!!), and who will scratch you off his list because you are a doctor shopper

:lol:

Now, if you are persistent, and choose your doctors carefully (and make your self-referrals (if your insurance allows this) based upon solid research of the doctors and your gut instincts) you can find the doctors who will read the information and know what you are talking about, who will listen to you and ask questions based on what you have told them, and you will go home smiling and say, well, I lucked out today! :D

I don't mean to denigrate your chosen profession and I know there are some wonderful doctors out there vecause I have actually found some of them, either by research or chance, and I can tell that you will be one , but there are far too many Dr. X's out there

[Emilushka]

Yes, Emilushka, in an ideal world, this is the way it would happen. As one of the other posters on the forum captioned her thread, Btdt. What actually happens when you do this is that Dr. X rolls his eyes, (all those lab reports!!!, three pages of personal history she wants me to read!!! Dr. Blank told me this patient does that!!!, I don't have time for this!!!) so they go with what Dr. Blank says and ask you a couple of perfunctory questions designed to elicit information that matches their pre-formed opinion and then don't listen to the answers. You ask them if they have read the information you provided and they say, well of course they did, but you heard them remove your chart from the slot on the door 20 seconds before they entered the room and know this can't be true, so you take out your own copy and point them to some salient points, at least which produces no interest on the part of Dr. X. So it does not prevent him from half-assing it. And you mentally scratch him off your list and move on to the next doctor on your list, who will know you have been to Dr. Blank, and now Dr. X ( and there are now more records to read!!!), and who will scratch you off his list because you are a doctor shopper

:lol:

Now, if you are persistent, and choose your doctors carefully (and make your self-referrals (if your insurance allows this) based upon solid research of the doctors and your gut instincts) you can find the doctors who will read the information and know what you are talking about, who will listen to you and ask questions based on what you have told them, and you will go home smiling and say, well, I lucked out today! :D

I don't mean to denigrate your chosen profession and I know there are some wonderful doctors out there vecause I have actually found some of them, either by research or chance, and I can tell that you will be one , but there are far too many Dr. X's out there

I know what you mean ... and yes, there are way too many Dr. X-style docs out there. I understand that patients who have had a terrible experience or set of experiences would feel betrayed, neglected, angry, frustrated, etc. And I try to validate these patients when I see them as a medical professional.

What I really ask of ANY patient is to please treat me as a blank slate. It's always my goal to HELP. In any way I can. And I know that many people, with the feelings I've previously mentioned, will not be able to do that. But I hope that they can, and I always try to help despite their lack of trust, and to win them over whenever I can.

It's difficult, especially with something as nebulous as Celiac. The drug-seekers many docs see regularly don't help your case, and that's entirely unfair to you and to others who have real symptoms and real problems.

All I can say is that there are docs out there who want to help and who want nothing more than to be able to make that difference for someone ... please don't lose hope. We aren't all scum. Some of us really go into this with great intentions and a lot of respect for our patients.