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I didn't realize what a prevalent issue this is - it seems to be a universal experience for people to become more sensitive over time. Generally, most people agreed that it is practically impossible to remain GF in a gluten home and it's very difficult for most restaurants to avoid contamination even though they provide GF items. Also, many people recommended testing for secondary food intolerances, especially dairy. I have been tested and try to avoid egg and dairy as well as gluten. There are many suggestions which I will change in my environment immediately. Thank you to everyone who replied.
**"It's very common to become more sensitive after going gluten-free.  If you are still having symptoms you'll have to re-double your efforts to separate your food and utensils from those of the gluten eaters at home. And reading labels is not sufficient.  You need to find out if cross contamination  from gluten is possible in the production of the food.  You should look for foods that are certified GFCO or, at the very least, claim to be gluten free and which have labels showing allergens present in the factory which do not show wheat as one of them, or you need to call the company and check on the possibilities of x contamination.  "Gluten Free" often just means that the company has not purposely ADDED gluten.  It does NOT guarantee testing or extra levels of care. As to eating out -- well it's probably nearly impossible to avoid cross contamination in a restaurant kitchen.  The presence of a gluten free menu does not mean that adequate efforts are being make to prevent cross contamination.   I advise that if at all possible you completely avoid eating out for six months while you concentrate on completely separating your food and utensils from the gluten eaters at home (I'm assuming you're living in a situation where you have no influence over what the other people eat). If your symptoms have improved at that time, I would counsel eating out not more than once in 4-6 weeks thereafter.  It's difficult, but there's really no choice if you're to regain normal health."
**"One environmental note: you don't specifically say anything about sponges. Perhaps you know they can carry gluten molecules from one location to another. Soapy water takes care of the problem for most things, but the porosity of sponges is such that I would consider it contaminated and off-limits if it is used, for instance, to wipe up bread crumbs."
**"...many of Amy's products are marked gf but make me very ill - cross contamination. L-glutamine helps re-build the stomach lining."
**"Some corn tortillas have gluten in them.  Check the labels carefully, even for a brand you've eaten before, as manufacturers will sometimes change their ingredients.  Also, some people are allergic to corn and don't realize it.  An article in the current "Living Without" magazine answers some questions about corn allergy."
**"If you eat oats, you may be one of the minority who have symptoms and even develop villous atrophy from oats. Get testing for additional food allergies. I used Immuno Labs in Ft. Lauderdale, but there are many such labs throughout the US. Are you cooking with flour? I will sometimes react just to airborne flour. Get an A1C test. You may be having blood glucose problems. This one is a bit of a reach but I am suggesting that elevated blood glucose can sometimes cause symptoms that we might attribute to gluten."
**"Have you had an IgG food panel done? This is different than the classic food allergy panel, which tests for IgE antibodies. If you have an IgG reaction, it can inflame your gut, which in turn can make you more sensitive. My understanding is that it is also possible to develop these intolerances after CD."
**"I found I got better when there was NO wheat baking in the house.  Although we kept it separate (my husband made bread in the basement) , flour remains airbourne for 24 hours or so.   Also when you buy GF products from a bulk store or health food store, check where they bag them.   There's often cross contamination."
**"Many brands of dog and cat food can have gluten in them -- we avoid those brands whenever possible (some of the special diet foods contain wheat and there are no gluten free alternatives) just so that we don't have to worry about contamination from that source."
**"Be on the lookout for possible bacterial infection which can mimic the symptoms of cd making it seem that even though you stick strictly to the diet it is not enough. The Specific Carbohydrate Diet controls that.  I and my adult kids have to go on that diet periodically in order to control digestive reactions."
**"When we noticed that some of my daughters symptoms were returning, we kept a food log.  Turned out, she developed a lactose intolerance and also a fructose malabsorption.  We took all dairy, even traces of out of diet and eliminated all foods high in fructose....she is now (a year later) reintroducing those items to her diet."
**"You probably already thought of this but if you share butter, condiments, peanut butter, etc. there could be contamination. Have your own butter and peanut butter. Buy as many condiments that squirt out as possible and school the gluten eaters not to touch the tips to their bread. Watch crumbs on surfaces you put your utensils on."
**" I got glutened from handling wild bird seed. Every Monday I felt terrible. I then figured out that it was Saturday I was feeding the birds and when I poured the grain, I could taste it because of the dust. Stopped feeding the birds and no more Monday sickness."
**"You need a GF section in your kitchen, a cupboard, a basket, a drawer, whatever, so you can keep your GF stuff safe.  If there is full octane bread (my term for NOT GF), it should be in a breadbox and counters wiped down after bread is used and dishes put right in the dishwasher.  When there is gluten around, be aware of what you touch, what it touches and get into a habit of washing your hands. "
**"Within 4-6 months of going gluten-free, most find that their tolerance level for gluten drops ZERO as their once over-worked immune system heals and begins functioning normally. For some, it only takes a trace of gluten causes a worse reaction than pre-dx.  Some who have no symptoms before their diagnosed will develop them after the initial months g.f. from accidental exposure to gluten. Common sense says that we must have a high tolerance level to gluten pre-dx or we would die long before we ever got a diagnosis, poisoned from all the gluten in a "normal" diet. I would look for things that husband is going...Hair products/bath products with hydrolyzed wheat protein. And, a young woman in our group says "no kissing unless the guy brushes his teeth."  It no fun to be sick if you eat/use something you shouldn't, it's worse second-hand from gluten enjoyed by someone else! Make sure that the products you use have little risk of cross contamination by checking for the other types of products the company is making.  Until the FDA defines "gluten-free," those words on a label mean nothing and are only as good as the integrity of the manufacturer.  If a company has a history of cross-contamination, recalls, or changes recipes or suppliers frequently, avoid it. If you have Rx meds, recheck them to make sure the manufacturers changed ingredients. Gluten has a cumulative effect so a  tiny trace of gluten will cause problems when you are getting 'dosed' every day. One way to track down a problem is w/ a food diary. I recommend using a steno notebook w/ the spiral at the top of the page.  Foods go down one column w/ a line between meals to designate time frame.  Symptoms go in the other column in the appropriate time frame.  Initially you will need to figure out the time between exposure & symptoms. You many also find it's not a gluten problem, but some other food--milk, soy or other bean flours, tapioca, canola, eggs, potato starch, who knows?  With celiac, anything can happen & usually does!"
**"I maintain a gf kitchen for the most part. I replaced all of my stirring utensils and we keep paper plates and paper towels by the microwave for both gf and regular food to reduce spatter and cross contamination. I have had problems in the past with residue from gluten leftover on kitchen and serving items at home (my husband and 2 sons get "sloppy" with dishes) with similar problems on the road when I am forced to eat in restaurants for 3 or more days at a time due to contamination in small bits for several days -- it seems to add up and I feel sick. At home, I am very strict about rinsing all traces of cereal etc. from bowls and silverware BEFORE putting it in the dishwasher. I have my own gf toaster at home. That helped. On the road, I take whatever food I can, I always request a room with refrig and microwave over and I take toaster bags for using in communal toasters. It is difficult to eat out, even closer to home -- are they frying in oil that was used for breaded items? Is the gf pasta thrown into the same boiling water used for regular pasta? If you are eating out and you explain everything about your gf diet needs, and they come out with a salad that has bread croutons on it or a cheese plate with crackers, my advice is to order a wine and nibble on the nuts and other snacks you keep with you for such emergencies. They cannot get it right so cut your losses and don't eat their food."
**"Most of my friends have found that a kitchen with gluten keeps them sick from cc. It really does not work - it just takes people various lengths of time to realize this..."
**"I'm one of the ones who reacts to products labeled gluten free that are less than 20 ppm, products like General Mills Chex cereals and baking mixes. However, I have no issues with products that are certified gluten free by the Gluten-Free Certification Organization (GFCO) to less than 10 ppm. I think that 10 ppm or greater is too much and folks are reacting and not realizing. You might eliminate those types of products for a week or two and see if your symptoms disappear."



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