Symptoms Getting Worse, Not Better

[czarz]

Hi --

My husband was recently (about 1.5 months ago) diagnosed with celiac disease. He has been on a gluten free diet since then, but the rest of the family is not. for about 1/2 of the time he has been on the gluten-free diet, he has been away on business. Some places he has been have been very good and have worked with him, others have not. He was recently in Malaysia and worked with a chef there -- he was feeling pretty well there, but became sick again when he got home, but not right away.

Our concern is that he does not seem to be getting better -- in fact, his symptoms seem to be getting worse. We talked to a nutritionist who said that this was common (that after going on a gluten-free diet, even a tiny amount of gluten would make you very very sick). But, as best as we can determine, he has not had any gluten recently and he is very very sick -- lots of nausea, diarrhea, discomfort, burning sensation in stomach. It's been particularly bad this weekend and is not getting any better.

We did go to a birthday party for our daughter and friends at another family's home -- as far as we know, he didn't ingest any gluten there, but there is always the possibility of cross-contamination. I'm guessing there's the possibility of cross contamination in our home too and would like some guidance on how to do a gluten-free diet for one family member while not for others. We have a tiny galley style kitchen with not a lot of excess room to store another set of pots, pans, dishes, etc -- for ex. I own only 1 large frying pan, a medium sized frying pan, a small frying pan, a stock pot, and 2 sauce pans. I don't have enough room to store them so keep them in the oven.

He is very discouraged and upset by all of this and thought he'd feel better by now. I have several questions:

1. is it true that even a microscopic amount of gluten can make a person with celiac disease sick for days upon days?

2. after ingesting gluten accidentally, how long do negative symptoms last?

3. How can I ensure that there is no cross contamination?

We have an appt. with a doctor at the Center for Celiac Research at Univ. MD in Baltimore, but that is not until July 13. I don't think we can all endure this misery until then.

Thanks for any advice/guidance.

[Takala]

At least you had the good fortune of contacting a nutritionist who realized that once you go on a gluten free diet, you do become more sensitive to cross contamination over a time.

Answers to the questions at the end:

1. Can a microscopic amount of gluten make a person sick for days ?

YES.

2. How long do symptoms last ?

Depends on the person. I don't react as strongly as super sensitive people, and I tend to recover more quickly, so I'm going to get knocked down for 1 to 2 days, but many people take a week to recover. A long period of illness may mean the person is getting repeatedly cross contaminated and has not identified the source and is still consuming it.

3. How can I ensure there is no cross contamination ?

Some things are going to have to change.

From what you are describing in your life, there are two things going on here. First, a person who needs to be gluten free, is eating in a gluten filled home with a very limited workspace, and it sounds like the gluten-free person is not the one doing the cooking, shopping, and label reading. Second, the person is relying on others to feed him half the time, out in the normal restaurant- serving world, and frankly, with the amount of cross contamination and clueless people in the restaurant business, even in restaurants with gluten free menu sections and conscientious chefs, this is very risky behavior and almost impossible to pull off successfully.

I eat out sometimes, on a weekend or on an off day for a restaurant day when they are not super busy. Even in the best of places, (and this doesn't have to be a well known chain with a set gluten free menu, just someplace with a good waiter, kitchen, and staff) I accept that I am still running the risk of being sick the next day. But if I have to be functional, no way am I going to risk it. For example, 2 years ago I made the mistake of eating out at a well known chain with a gluten free menu on the day before a holiday, and I got nailed so badly it ruined the next day. That just isn't worth it for me.

You may want to consider going to a gluten free household. It's really not difficult. Most of the world's cuisines adapt easily, except American fast food, which is bad for you, anyway. My husband suggested this after seeing me wiped out one too many times by accidental cross contamination, and says he gets plenty of the "other stuff" if he wants it by eating lunch out at work. We eat a lot more fresh fruit and vegetables and unprocessed foods than the average person as a result, which is healthier. His biggest change was just switching to a gluten free cereal in the morning. Dinner was already gluten free. Ironically, I am rather carbohydrate intolerant so I don't eat much gluten free cereal anyway, preferring anything but that in the morning, but it has come in very handy for a family pantry item.

The other thing I would do is start bookmarking all the gluten free blogs and start reading them, and look for book suggestions and mail order some books (I have noticed to my perplexity that several chain bookstores I visited over the past few weeks had nothing on gluten free cooking and baking, which is what you want. Just reading about it will give you a good idea on how to pull it off. )

I'll add a 4th-

Don't eat things at other people's houses unless they're also gluten intolerant or celiac or have a family member as such, and can comprehend the carefulness necessary to ensure no cross contamination. They may mean well, but it is very doubtful, unless they have had to study this and implement it, and have had some restaurant training, or have somebody in the family with other food allergies or intolerances, that they "get" it. This doesn't mean you have to be a hermit or a recluse, go and enjoy, but eat before or afterwards, and just stick to having something to drink or bring your own snack. If you're casual and accepting about it, nobody really notices anyway. Sometimes I take things I have made to a social thing, but they will be gluten free things, and nobody knows the difference anyway (altho I will label it as such, as any cookies I make tend to have nuts in them.) But I will go ahead and have my little side plate made up first, because people will be promptly cross contaminating it. For example, we took some home made gluten-free cookies to a party. My husband lays the gluten-free cookies down on the potluck table, with the post it note saying "gluten free cookies, contains such and such," and promptly scoops up some for me and himself on a plate before you know what happens. Sure enough, a few minutes later, another visit to the table reveals that somebody has stuck OTHER TYPES OF COOKIES on the same serving plate. Gaah ! We're not gluten free now. Remove label.

There may also be other food intolerances at play. The most common are dairy, either to lactose, the milk sugar, which is found in regular milk but not in yogurt or aged cheeses, and to casein, which is the milk protein. Some people heal up after a time of being gluten free, to where they can tolerate dairy as long as it doesn't have lactose, others can't. Another common problem one is soy. Some people can't do corn. I'm not good with flax, which is a real common ingredient in gluten free baking recipes. I can now handle organic, cultured butter, where before I wouldn't go near it. But from what you are describing, with a large amount of meals consumed being eating out at restaurants, cross contamination is the most likely culprit.

Most people initially will not think to check for gluten in things like toothpaste, mouthwash, hand lotion, lipstick, shampoo,conditioner, soaps with oatmeal that is not gluten free oatmeal, medications, over the counter and prescription.

Also, most metal baking pans have this stuff burnt onto them and will need to be replaced for gluten free baking. Ditto plastic storage tupperware tubs that had who knows what stored in them. Ditto wooden spoons should not be used, and plastic spatulas should be either dedicated or not used. Ditto colanders that have been draining regular wheat filled spaghetti and macaroni pasta products, and not the rice based one. The toaster is another thing- A dedicated toaster is a necessity for the gluten free eater. I like toaster ovens better because the little rack can be taken out and scrubbed off if necessary.

At first this may seem overwhelming. Just make lists and work at it methodically.

[lovegrov]

1. is it true that even a microscopic amount of gluten can make a person with celiac disease sick for days upon days?

It CAN happen, but does not for most people with celiac. He may be one of the unfortunate ones.

2. after ingesting gluten accidentally, how long do negative symptoms last?

Depends on the person. For me, less than a day. For others, days. I've even seen people swear theirs lasts for weeks, but I think there's a psychological component there.

3. How can I ensure that there is no cross contamination?

Impossible to do when you eat out or go to somebody else's house. Your husband needs to avoid eating out absolutely as much as possible. If his job requires him to travel a lot and he cannot take care of his own food, he's in trouble. There are people with celiac who have had to change careers or seek a job in the same career that doesn't require eating out as much. I know this sounds drastic, but if your husband continues getting sick and going downhill, he won't be able to function in his job anyway.

richard

[starrytrekchic]

The best thing for you and your husband to do is to pick up an extensive book on celiac disease and start learning everything you can. There's a LOT that goes into learning how he can and can't eat.

He's going to be more sensitive right now. This means no crumbs anywhere. Anything added to food must be made from dedicated gluten free jars (in the case of jams, peanut butter, butter, etc.), from unopened packages, or from squeezable bottles.

He needs to know what to look for in ingredients--seasonings and so forth might not be safe. He also needs to be aware of cross-contamination in the factory, what all can legally be placed under 'natural ingredients' (barley can be) and also what gluten-free labeling laws are in other countries, since he travels.

I've only set foot in a 3-4 restaurants since going gluten free, and it's still terrifying. He's going to have to make a major life-style shift if he wants to get better, and that generally means skipping restaurants until he's got a better grasp on the diet. Few restaurants understand the gluten-free diet, and getting sick at them is very common.

The other poster had good advice. Make sure all eating/prep surfaces are regularly and thoroughly cleaned and check things like personal products and pet foods. If you're cooking a combo of gluten/gluten-free meal, make sure to fix the gluten-free parts first and set them someplace they can't be contaminated. Also, make sure those dishes are served first, and no one tries to use gluten-contaminating utensils on the non-gluten dishes. You'll also have to throw out any food that touches surfaces that are possibly contaminated during the cooking process (like stirfry that falls on the stove.)

Recovery times depend wildly on the individual, anywhere from hours to weeks. Also, make sure he knows the difference in symptoms from Celiac and ones he would get with (usually temporary) intolerances that crop up during the recovery stage.