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Is There Something Called "contamination Celiac"?

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A friend of a friend has a college-age daughter with celiac disease, and she says that the girl was tested for something called "contamination celiac," which is when you are sensitive to the remnants of gluten. Apparently this girl is able to eat cold cuts lifted directly off bread or pick croutons out of the salad and then consume the salad without any ill effects. She says you can test specifically for this. Her father also told me that she can eat Chinese food because she doesn't react to soy sauce. I have to admit, after he said that, I was very skeptical that this family was really doing everything they could to keep their daughter safe. I have never found anything online about a condition called "contamination celiac." My understanding is that celiac is black and white--you either have it or you don't, and if you have it then you absolutely cannot eat things that have touched bread, and you cannot eat soy sauce even though there may be just a small amount of wheat in it. Thoughts, anyone?

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This looks suspicious to me. I often hear people with Celiac say, they can have a little bit of this, or there is no problem if I just remove the croutons from the salad. If that was the case, I shouldn't worry about eating gluten at all. I have hardly any noticable reaction. However, just because I don't feel anything, doesn't mean that the damage isn't being done. People with few symptoms have to be the most careful, because it is not easy to determine when gluten has been consumed.

Doug

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There is no degrees of Celiac. Whoever fed them that bull is either trying to sell them something or her daughter lied because she doesn't want to do the diet completely. Her daughter is an adult.

Might give her a copy of this info. You canbably find something similiear on the Columbia or Mayo or Maryland websites to bombard her with.

http://www.celiacdisease.net/assets/pdf/CDCFactSheetsTreatment6.pdf

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

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Lookie! More! Copy them all off. Under line or circle the important parts.

http://www.celiacdiseasecenter.columbia.edu/A_Patients/A02-FAQ.htm

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

http://www.bidmc.org/CentersandDepartments/Departments/DigestiveDiseaseCenter/CeliacCenter/FAQ/GlutenandtheGlutenFreeDiet.aspx#cheat

Can I cheat on my gluten-free diet?

Unfortunately, the answer to this question is no. Even when you are sticking to a gluten-free diet, it is impossible to eat gluten-free 100% of the time. This is because there is always some level of contamination of foods, whether it is when the food is processed, when dining out, or in your own kitchen at home. Intentional or unintentional ingestion of gluten will prevent your villi from healing well. Therefore, it is very important to follow the gluten-free diet as carefully as you can to benefit from it.

What are the consequences of not following a strict gluten-free diet?

There are serious consequences of not following a gluten-free diet when advised to do so by your physician. There will be continued changes in the lining of your intestines. These changes will lead to decreased absorption of nutrients, possibly leading to other conditions such as osteoporosis and anemia. You will also be at increased risk for gastrointestinal cancers, as well as non-Hodgkin

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Thanks, all, for agreeing with me. When I met the father last year and he told me that she eats soy sauce, I immediately wondered what the deal was with this family. Also, the mom told me that after being diagnosed at age two they never bothered getting the kid any further bloodwork or follow-up testing. My daughter was diagnosed a year ago and we have been SO CAREFUL. Her TtG at diagnosis was 169 and now it is 2. She had tremendous intestinal damage and very few symptoms. I know from experience that if she accidentally eats gluten she does not feel it. But those biopsy pictures proved all the damage. I think this family is pretty ignorant, but of course they know better because after all their daughter has had it for 17 years and mine only one!

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Sometimes I find that people believe things because that is what their doctor or healthcare professional tells them despite evidence to the contrary. I unfortunately see many people like this. It's sad the the medical profession is so misinformed about celiac.

I was at work this weekend and a coworker and I were talking about varrious things. I was telling her I was curious to see what my 6 year olds growth was going to be at his next yearly check up. He went gluten free 11/10 and in 2/11 he went for his 6 year check up. The NP commented that he gained considerable amount of weight..went from the 10 % to the 50%. He has continued to grow leaps and bounds and he is catching up with his 10 year old brother who is very small. We were also talking about drinking and I mentioned that I have been telling my son that beer is off limits because of gluten and it will make him sick and for various other obvious reasons. Our ED doc spoke up and asked if my son was diagnosed. I said yes he had positive blood work and that since there is usually never false positives and myself being diagnosed that he had celiac. He goes on to say that well some people think they are celiac and they aren't. For some reason that irritated me. So I went into my rant how I(and our allergist) feels that my oldest is either a seronegative celiac or gluten intolerent based on some of his symptoms and the fact he has a brother and mom with it, that IBS is a not a diagnosis(sure the bowel is irritated and something is causing it) and that I felt everyone that is given the IBS "diagnosis" should be screened for celiac. So I guess my point here is that so many healthcare professionals are undereducated about it also so that unfortunately is what they convey to their patients.

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When I meet "celiacs" who feel like they can cheat once in a while. I immediately wonder if their Dr actually told them that and when. If I had listened to the Dr who diagnosed me(4 1/2 months ago) I would have "continued eating gluten until the symptoms got worse, and not tested my kids until they were 12 because a gluten-free diet can effect growth" Oh, and "eating rye bread because many celiacs can tolerate rye!" ?????? REALLY?!!

Thank God for the internet and this forum.

I'm not sure how you explain to them that they are wrong and they need a new Dr and that they are hurting themselves. And eating a gluten-free diet is "Too hard!" What a load of crap.

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A friend of a friend has a college-age daughter with celiac disease, and she says that the girl was tested for something called "contamination celiac," which is when you are sensitive to the remnants of gluten. Apparently this girl is able to eat cold cuts lifted directly off bread or pick croutons out of the salad and then consume the salad without any ill effects. She says you can test specifically for this. Her father also told me that she can eat Chinese food because she doesn't react to soy sauce. I have to admit, after he said that, I was very skeptical that this family was really doing everything they could to keep their daughter safe. I have never found anything online about a condition called "contamination celiac." My understanding is that celiac is black and white--you either have it or you don't, and if you have it then you absolutely cannot eat things that have touched bread, and you cannot eat soy sauce even though there may be just a small amount of wheat in it. Thoughts, anyone?

There are very different levels of sensitivity among celiacs. The "boardthink" here is that nobody with celiac can tolerate any gluten at all, but that is far more black and white than a lot of papers I've read. Challenge studies have been done and there are definitely celiacs who can tolerate small amounts of gluten without relapse. There are even celiacs who develop true immunological tolerance to gluten again, though it may not always be permanent. I have never heard the term "contamination celiac" but it is possible that she had a blood test and repeat biopsy on her slightly CC'd diet and came back normal. She is probably still below the 20-30 mg/day that this study looked at, as picking croutons out of salad or eating soy sauce is still a pretty small amount of gluten.

http://www.ncbi.nlm.nih.gov/pubmed/15191509

By the way, I'm not discounting that some folks here are bothered by amounts of gluten so low they cannot be detected. Remember that people on this board are not necessarily a representative sample of people with celiac disease.

Re: soy sauce, some naturally fermented soy sauces do test below the detection threshold of 5ppm gluten, comparable to commercial gluten-free baked goods.

http://www.soya.be/gluten-free-soy-sauce.php

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There is a brand of soy sauce, San-J Tamari, made without wheat, which is gluten free.

http://www.san-j.com/product_info.asp?id=3

I don't know exactly what brand of soy sauce PF Chang's (Chinese food chain) uses in their gluten free menu offerings, but it is something they are calling gluten free.

People vary in sensitivity. I consider myself less sensitive than some, but my symptoms are very different. Years ago I was cross contaminated inadvertently at a restaurant out of town on the first day of a conference, because the waitress, I suspect. had no idea what I was talking about, and did not seem that happy to be working there nor waiting tables (I've done restaurant work, I can usually get most of them to at least crack a smile, geez). Since I knew I was then in for a round of lack of balance and grogginess, I was not as strict as I could have been about cross- contamination subsequently the next day. "shrug" doomed if you do, and doomed if you don't. The organization putting on this was not real concerned about my lack of options, (after implying they would be on the registration process) culminating in the return trip from **** where they ripped a lot of people off on the last meal they didn't give us, before sending us to the airport having massive flight cancelations, and I've not gone back.

So yeah, in extraordinary circumstances I might be seen rinsing off lunchmeat that touched bread, and not being a model gluten intolerant. NEXT time, if there was one, I'd just rent a car and get out of there, and drive myself a few thousand miles with less hassle, after purchasing a cooler and some real groceries.

This is sort of consistent with life, in general. I can be extraordinarily careful and get nailed anyway cooking at home with a single bad ingredient which is not true to its alleged gluten-free status, which will make me the most irritable, or I can be less careful, and not get nailed eating out, when other people do. Or I can be super super super careful at a heavily researched restaurant... and get hit anyway. On the other hand, I read some stuff on another board sometimes, and I am gobsmacked at the risks some are taking with commercially prepared items or fast food or fancy coffee drinks.

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This is sort of consistent with life, in general. I can be extraordinarily careful and get nailed anyway cooking at home with a single bad ingredient which is not true to its alleged gluten-free status, which will make me the most irritable, or I can be less careful, and not get nailed eating out, when other people do. Or I can be super super super careful at a heavily researched restaurant... and get hit anyway. On the other hand, I read some stuff on another board sometimes, and I am gobsmacked at the risks some are taking with commercially prepared items or fast food or fancy coffee drinks.

OMG me too! Like you, I have times when I make mistakes and have no reaction and then I have D out of nowhere when I eat specialty gluten-free foods at home. I have to wonder whether my reactions to gluten are really that wildly variable, or if I'm sensitive to something else I haven't figured out.

Do you think all your reactions are definitely gluten? It would be a great relief to hear that I'm not alone in reacting to traces on one day and not on another.

By the way, I have also wondered about desensitization. Do we make ourselves super-sensitive by avoiding gluten too well? Sort of like allergies? There is some literature suggesting that celiacs can desensitize which is why there is ongoing research on a vaccine.

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I understand that some celiacs don't have any outward reaction to gluten--my teenage daughter does not get any of the obvious symptoms that hit some celiacs so hard, but her diagnostic biopsy last year showed enormous damage to her intestines. My concern is for people who believe they are okay with a little contamination because they don't "feel" it, when inside the damage is being done!!!

Takala, thank you for the info about soy sauce. We do use gluten-free soy sauce at home, of course, but what this friend of a friend's daughter is doing is simply eating Chinese food anywhere and everywhere without inquiring. And I'm sure that the overwhelming majority of little mom and pop Chinese joints are not bothering with gluten-free.

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I understand that some celiacs don't have any outward reaction to gluten--my teenage daughter does not get any of the obvious symptoms that hit some celiacs so hard, but her diagnostic biopsy last year showed enormous damage to her intestines. My concern is for people who believe they are okay with a little contamination because they don't "feel" it, when inside the damage is being done!!!

My 7yo was like that but after 6 months off it she's now very sensitive to it. One crumb can mean horrible affects for her for up to a week. I never would have picked up on the fact she has the disease so I'm happy that her Paediatrician was persistent with it and wanted to check her for it. It was of harm to her on the inside even if I didn't pick up on the outside symptoms which were mild at the time.

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OMG me too! Like you, I have times when I make mistakes and have no reaction and then I have D out of nowhere when I eat specialty gluten-free foods at home. I have to wonder whether my reactions to gluten are really that wildly variable, or if I'm sensitive to something else I haven't figured out.

Do you think all your reactions are definitely gluten? It would be a great relief to hear that I'm not alone in reacting to traces on one day and not on another.

By the way, I have also wondered about desensitization. Do we make ourselves super-sensitive by avoiding gluten too well? Sort of like allergies? There is some literature suggesting that celiacs can desensitize which is why there is ongoing research on a vaccine.

FWIW, I thought that I was getting glutened and could not work out why or how and it turned out to be fructose malabsorption, specifically, onion in large quantities. I was so puzzled at first, I could not understand how I was possibly being glutened at home.

I'm not sure if my reactions vary. I feel like there are times I've been lucky and should've gotten got but feel fine, and then others, whamm, did not see it coming. I have worked out that D without strong stomach aches is generally not gluten.

I think there is something in making ourselves super-sensitive by avoiding it so well, but I don't see any way around that. I've not noticed it with any other foods, so I don't think it's a bad thing (obviously, the gluten isn't good if it gives us that reaction), and trying to desensitise would seem too much like trying to build up a tolerance to poison like that guy in The Princess Bride. I like that I get such an obvious reaction because it keeps me strict. The lack of intense stomach aches (and balance issues, etc) with the fructose malabsorption makes me less interested in following those restrictions carefully, I just try to be aware.

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OMG me too! Like you, I have times when I make mistakes and have no reaction and then I have D out of nowhere when I eat specialty gluten-free foods at home. I have to wonder whether my reactions to gluten are really that wildly variable, or if I'm sensitive to something else I haven't figured out.

Do you think all your reactions are definitely gluten? It would be a great relief to hear that I'm not alone in reacting to traces on one day and not on another.

By the way, I have also wondered about desensitization. Do we make ourselves super-sensitive by avoiding gluten too well? Sort of like allergies? There is some literature suggesting that celiacs can desensitize which is why there is ongoing research on a vaccine.

____________

The gluten reactions are pretty distinct in that I get certain neuro symptoms and I get really sleepy. And after that nap, my sense of balance is off - and I'm clumsier- I have to work on my balance, unlike a regular person, so this is more noticeable to me. I might still be able to do some of the test yoga poses, but I'll be struggling more with it. But my one eye also tends to not track as well. My stomach will also puff out a bit and my ankles will swell, besides my face tends to break out a day or two later. A bad glutening, and my joints will flare, and I will get pretty miserable. Every thing slows down and stiffens up.

The other way to suspect a gluten reaction is - did I just eat something new, or a new product, that came in a box/package I just opened ? And does the label say "gluten free?"

Allergic reactions are different. There is the standard spring pollen reaction, stuffy nose. A lot of mold/dust will make me wheeze. Also, I have contact allergies to certain plants, hays, some antibacterial soap (gaaah, I hate that stuff) and unknown things. I had a round of that tonight - I came home, my hands are itching like crazy, and it's either a reaction to the soap in the restaurant restroom, or something residual on my steering wheel cover, because this has happened before after driving that car. (sometimes my spouse drives it... really need to clean it....) It was starting to blotch up. I took off the bracelet/watch and washed my jewelry, and hands w/ cold water and soap about 5 times, and a half hour later it was going down without having to take antihistamine. Now, one and a half hours later, it's gone.

Sometimes I eat the unknown things I react to, and that's also a different reaction, more like a classic feeling of generalized itchiness, my lungs will also tighten up a little sometimes, and my eyelids might get a little puffy. Since this happens sometimes, inconsistently with non organic dairy, I wonder if it is a reaction to tiny amounts of antibiotic or other chemical residue that they treated the poor cows with. Organic cheese okay. Sliced cheese product that is supposed to be okay, but made me itch a little for a few hours, then went away, no other symptoms, likely the mystery allergy.

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When I meet "celiacs" who feel like they can cheat once in a while. I immediately wonder if their Dr actually told them that and when. If I had listened to the Dr who diagnosed me(4 1/2 months ago) I would have "continued eating gluten until the symptoms got worse, and not tested my kids until they were 12 because a gluten-free diet can effect growth" Oh, and "eating rye bread because many celiacs can tolerate rye!" ?????? REALLY?!!

Thank God for the internet and this forum.

I'm not sure how you explain to them that they are wrong and they need a new Dr and that they are hurting themselves. And eating a gluten-free diet is "Too hard!" What a load of crap.

It's like we had the same doctor! When I was trying to get my son diagnosed his doctor flat out did not believe that I knew what was going on with my son. He accused me of "wanting" my son to have celiac disease! He also said that the diet was "incredibly difficult" and there was "absolutely no way you are adhering to it 100%". Well he sang a different tune when all of the test results came back! He congratulated me on sticking to the diet so well and said that I was right about my son being celiac. I was sad about my son's diagnosis but thrilled that he had to admit he was wrong.

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