When gluten symptoms persist and we don’t know why, the Celiac Support Group offers some suggestions.

Q. I'm eating gluten-free but still have diarrhea. My doctor tells me my celiac antibody levels are now normal, so apparently I'm not getting gluten. Help!

Diarrhea can be a sign of gastroenteritis and many other illnesses and diseases. Always address diarrhea as well as other continuing issues with your doctor.

If you are told you have Irritable Bowel Syndrome, ask your doctor if it could be caused by SIBO (Small Intestine Bacterial Overgrowth).

If you are told you may have other food intolerances, ask your doctor about being tested. The doctor also may refer you to a dietitian. The dietitian can help you sort out what to do if you have fructose malabsorption, sucrose intolerance, lactose intolerance, other food sensitivities or digestive conditions that can cause diarrhea.

Q. I'm eating gluten-free, but my celiac antibody levels remain high. I don’t understand this. Help!

First, be sure to thank your doctor for checking your current antibody levels. Gluten symptoms do not correlate well with gluten damage. With or without symptoms, Celiacs need to know if their immune system is still reacting to gluten. Most doctors check their celiac patients' antibody levels periodically.

Now it’s your job to find out where the gluten is. See if adopting the Gluten Contamination Elimination Diet helps.

Here are some other ideas to consider:

  • Keep a foods-moods-and-symptoms diary. You might find a pattern, or recurring time delay, that points to a possible culprit. 
  • Recheck your prescription and non-prescription drug products by calling the manufacturers.  See also Gluten in Drugs - Action Steps Needed.
  • Recheck the foods and supplements in your pantry. If any are not labeled gluten-free, replace them with a gluten-free-labeled substitute.
  • If you're unsure about a particular product or medication, get a home test kit to test for gluten. 
  • Reduce cross-contamination risks by not buying from bulk bins. 
  • Until you get a better handle on what's happening, don’t eat out, and graciously thank but decline-to-eat the baked goods that your family and friends are making for you in their not-gluten-free kitchens. 
  • Don’t take chances at parties. Eat before you go, or bring your own food and drink.
  • Replace any cookware previously used with gluten if there's anywhere gluten can hide; this includes cutting boards, wooden spoons, plastic spoons, plastic bowls such as Tupperware, plastic glasses coffee mugs and thermoses, toasters, colanders, and cast-iron or other cookware that is porous or has cracks. 
  • If your kitchen isn’t gluten-free, ask those who share it with you for their help. 
    • Airborne flour particles can later “settle.” The easiest fix is to remove all gluten-containing mixes and flours from the kitchen. 
    • Arrange for separate prep areas, each with its own cutting boards, serrated bread knives, toaster, wooden spoons, etc. - anything that can’t be thoroughly cleaned after use.
    • Clean all kitchen surfaces, the can opener, even the “dust” in the flatware drawer, and don’t “recycle” any gluten to the gluten-free prep area by re-using the sponges (clean or paper towels are an alternative). 
    • Separate sponges for cleaning/washing gluten and non-gluten items.
    • Clearly label refrigerated foods so that your peanut butter doesn’t acquire gluten crumbs from someone else’s knife.
  • Use disposable plastic gloves if you must handle gluten. 
  • Use dishwashing detergent that’s gluten-free, or wear gloves. 
  • Beyond the kitchen...
    • Don’t kiss-on-the-lips someone who’s eating gluten.
    • Check personal care products. Gluten on the skin can end up in the mouth, and breathed-in airborne gluten (eg, from aerosols) can be swallowed.
    • Check pets’ foods and toys. Gluten free food is available for dogs and cats.
    • Click here to read a case study involving gluten in an orthodontic retainer.
    • Check children’s play doughs and finger paints.
    • Oats currently labeled gluten-free may be either "purity protocol" oats (gluten-free from farm to fork) or regularly-grown oats that are mechanically sorted to separate out those contaminated by gluten.  If you are eating the latter, you may want to check out this webpage and this CSG blog post, call the manufacturers of the products you are ingesting, and then decide what might be helpful for you to do next.   

Q. I'm Celiac and still reacting to gluten. I have a gluten-free kitchen. My dog eats gluten-free. I even bought her a gluten-free toy. More help?

Check that toy—a gluten-free-labeled dog toy that contains wheat starch proved problematic for one Celiac dog-lover.

If you’re not willing to try the Gluten Contamination Elimination Diet, you might also consider keeping track of how much gluten is in the gluten-free-labeled foods you eat. The legal limit is 20 ppm gluten. One gluten-free cookie and 10 gluten-free cookies, each containing 19 ppm gluten, may have different effects. Many products currently on the market test under 5 ppm gluten. If products are certified, they generally are under 5 or 10 ppm gluten. Manufacturers are not required to test their products, but you can ask the manufacturer what their standard is.

Wheat starch and other gluten-removed ingredients are allowed under the gluten-free labeling law, but testing is considered problematic. You may want to avoid such ingredients.

Q: Where can I eat out gluten free?

This FAQ is addressed at Gluten Free Restaurants.

Contact us for more information about trouble-shooting gluten related problems.