The Frustrations of Hidden Gluten

The process of removing gluten from my diet and my life in general has been an emotional and frustrating experience. When you first receive the diagnosis there is a bit of relief. Finally, an answer. No more gluten. I can do that. Of course you think eliminating wheat from your diet, while disappointing on a culinary level, should be fairly simple, straightforward. Unfortunately that is not the case at all. Gluten is in everything. Or rather, gluten is added to everything.

If you are new to eliminating gluten I extend to you my sympathies. This is overwhelming. Please don’t think that you should have this all under control quickly or that is was easy or simple for everyone else. It is just plain hard! Even a year after diagnosis I was surprised by how much I didn’t know and wasn’t doing to protect myself. Learning the hidden sources of gluten and the sneaky names for gluten is vital and then reading labels…lots and lots of labels, all the time. Even read the labels of products you have used frequently. I remember when one company that I had used and loved was bought by a larger company. I started seeing the items in Target and Walmart for cheaper and was so excited but with the new company and distribution came a different formula and different processing equipment. I started reacting and couldn’t use them anymore. It stinks!

There have been times when I stood in an aisle at the grocery store for many long minutes staring at food that I couldn’t eat but wanted to. Fighting a silent internal battle. So much food out there that I just can’t eat. It robbed my joy for a long time. This is where a support system also helps incredibly. There have been many, many times while sitting in a restaurant or holding a bag of food that Tommy (my dear husband) has had to say, “no, it’s not worth it. You might be okay this time but you might not and it is not worth it.” That is all it takes for me in those moments of weakness, to remember how horrible contamination is, and I have the strength to say no and make a better choice.

So on to some practical lists and hopefully helpful information. There are many many lists out there and I suggest looking around and doing your own studies but this is what I have learned.

Other Names for Gluten

  • Maltodextrin or Maltodextrose (usually from corn but if not clearly stated be cautious)
  • Natural Flavor (again, if not stated what the flavor is, don’t trust it)
  • Modified food starch (often from corn but not always!)
  • Hydrolyzed Vegetable Protein
  • Vitamin E/Tocopheryls (can be derived from wheat)
  • Glucose (usually from corn but can come from wheat)
  • Monosodium glutamate MSG (usually derived from corn)
  • Emulsifiers
  • Lecithin
  • Caramel color

Other Names for Wheat

  • Binder or binding
  • Bulgur
  • Cereal
  • Cereal binders or cereal protein
  • Couscous
  • Duram (durum)
  • Einkorn
  • Farina
  • Filler
  • Flour
  • Frumento
  • Graham
  • Gum base
  • Hydrolyzed wheat protein
  • Kamut
  • Malt
  • Manna
  • Matzo
  • Matzah
  • Matzoh
  • Rusk
  • Seitan
  • Semolina
  • Special edible starch
  • Spelt
  • Starch
  • Thickener or thickening
  • Triticale (a hybrid of wheat and rye)
  • Wheat alternative

Food – I walked around with a list of all the names of gluten and wheat in my purse for almost a year. I would read every label and compare it to my list until I learned the names to look for. I recommend to not assume anything from a food in a package, any package. You would think hash browns would be 100% potatoes but not so, especially if they have something “special” about them (i.e. extra crispy, flavored). The following is a list of POSSIBLE HIDDEN sources. Not all of these contain gluten all the time and I am leaving out the obvious bread, breaded products, noodles, etc. Don’t worry, there is still a lot of food out there we can eat…you just have to find it!

  • Dairy: sour cream, creamer, processed cheese, flavored cheese, shredded cheese, powdered creamer, malted drinks – read labels!
  • Meat: sausages, some cold cuts, patties (especially with additives), chili, canned meats, seasoned meats – be very wary of anything flavored or seasoned
  • Fats and Oil: salad dressings, mayonnaise
  • Fruits: pie fillings, thickened or prepared fruit, fruit fillings
  • Vegetables: vegetables with sauces, commercially prepared or seasoned vegetables, canned baked beans, pickles
  • Beverages: – cocoa mixes, root beer, chocolate drinks, nutritional supplements, beverage mixes, beer and some alcohols. There is huge debate about the distilling process and being gluten free. I am too afraid to try beer that claims to be gluten free but is brewed from a gluten filled grain. I have tried distilled drinks from wheat and reacted badly.
  • Snacks and Desserts: custards, puddings, ice cream, sherbets, candies, coated popcorn and chips, chewing gum
  • Soups: commercially prepared soups, canned soups, soup mixes, broths, bouillon cubes
  • Condiments: – flavoring syrups, mayonnaise, horseradish, salad dressings, tomato sauces, meat sauces, mustard, taco sauce, soy sauce, teriyaki sauce, chip dips. Take notice-soy sauce has wheat in it! I was blown away when I found out. Tamari Sauce does not! Yay 🙂
  • Seasonings: curry powder, seasoning mixes, meat extracts. This is a huge one. We had a turkey down on Thanksgiving due to seasoning mix that had wheat as an ingredient. Gluten is also often used to hold seasoning mixes together or to help them flow freely. Pure is better but be careful for cross contamination from shared equipment.

Wow! This is a lot of information. As I sit here and think about other ways and places to be careful and what to watch out for I am exhausted. I’ll work on eating out, personal care products, and non-food items in my next post.


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