Gluten-Intolerance Initial Diagnosis Survival Sheet

by Jeanne on February 24, 2012

Lately, I’ve been asked to help out folks who have recently been diagnosed as gluten-free or have been put on a gluten-free diet for one reason or another. I’ve been meaning to have a post dedicated to this for some time now, so here it is!

NOTE: I am not a medical doctor, so do not take any of this as medical advice. If any of this contradicts what your doctor has said, then double check with him/her before following any of this advice.

Note: Gluten is found in: all forms of wheat (including spelt, kamut, farro, emmer, einkorn, semolina), rye, triticale (a cross between wheat and rye), and barley.  Every single one of these grains contains gluten.  Don’t let anyone try to convince you otherwise.

1. First and foremost: Concentrate on the foods you CAN eat versus the foods you can’t eat.

It’s natural to all of a sudden see the world through a gluten-lens when you’re put on a gluten-free diet. If you’re anything like me at the beginning, all of a sudden it seems like every single food item in your universe contains gluten.

Relax. Truly, when you look seriously at your food world, I can guarantee that a good portion of it is naturally gluten-free.  Most of the real food we eat is actually gluten-free:

Meats, poultry, fish, beans, veggies, fruits, rice, potatoes, dairy, quinoa, buckwheat, corn. These are all naturally gluten-free. You can eat these with abandon (as long as you’re not also sensitive to any of these).

2. Do not eat processed foods.

At least while you’re getting used to this whole thing. Processed foods are where most of the gluten in our diets come from. And by processed I mean: store-bought cakes, cookies, breads, bagels, scones, doughnuts, frozen dinners, ice cream, candy bars, gum, energy bars, fast food, salad dressing, and many of the drinks at Starbucks (yes, it’s awful).

This step will be harder for you if you have relied upon convenience food up to now. If this is the case, then you have a harder job ahead of you. BUT. It’s not an impossible job. It requires you to slow down for a minute and get used to some “real” food.

Also, there are eleventy million sites out there that have information on gluten-free processed food. Go to one of those if you want recommendations on those types of things. But I promise, if you just go simple for awhile, you will be doing yourself a huge favor.

3. Realize that you will probably go through a mourning process about your diagnosis.

Be gentle with yourself. I was diagnosed as gluten-intolerant when I gave birth to my daughter (whom I call “Girlfriend”).  When they told me that her birth is what triggered my gluten intolerance, I spent a good year mulling this over in my mind and playing the horrible mind game of: “if Girlfriend was never born, I wouldn’t be gluten intolerant. If I knew that before I got pregnant, would I have gotten pregnant?” I felt horrible thinking this way, but it was natural for me to do it.  It was very hard for me not to make this comparison.  Also, I felt very sorry for myself and quite angry with the world, and felt deprived every time I encountered yet another thing that I couldn’t eat.  I eventually got through this, but it took awhile. And I’m guessing you will probably be going through your own version of the mourning process, complete with denial, anger, bargaining, etc.

4. Know what’s old information and what’s new information about gluten and gluten-free foods.

Information about where gluten lurks in food is always changing.  For example, we used to think distilled alcohol made from glutinous grains had gluten in it. Therefore, many mustards, vinegars, salad dressings with vinegar, and alcohols like vodka were thought to contain gluten.

We now know that the gluten protein is too big to get through the distillation process and so distilled alcohols are OK. Caveat: unless they have the “mash” added back in. I haven’t experienced this, but I have heard that there are alcohols, etc., where they take the barley, rye, or wheat and add it back to the mix. If this is the case, then it is not gluten-free.

At one point, wheat starch was sometimes added to baking powder in the United States.  This is no longer true.  I haven’t found a single baking powder that contains wheat starch in the US.  There are still several in the UK that contain wheat starch.  Check out my Baking Powder post for a list.

A good place to get up-to-date information is

5. Be aware of other foods you might be reacting to.

It’s very common for newly diagnosed gluten-free folks to react to all sorts of other things—especially dairy. The top 8 allergenic foods are: wheat, dairy, eggs, soy, tree nuts, peanuts, shellfish, and fish. I would add corn to this list.  Your body is used to reacting to things, so you may want to be careful about what you are eating until you’re totally clear what you react to and don’t react to. It’s my understanding that once your system has healed from the gluten damage (by you not eating gluten), you will once again be able to eat many things you might have originally reacted to. So, if you currently react to dairy (or whatever), don’t panic. Just go off of it for awhile until your system has healed.

Also, another controversial grain for gluten intolerant folks is oats.  It turns out that many of us react to them (even the gluten-free ones) because they contain a prolamine (avenin) that is very close in structure to the prolamine that we react to in wheat (gliadin).  Check out my post about oats if you think this might be you.

6. Ask your doctor to test your iron and vitamin D status.

Many, many folks who are gluten intolerant do not absorb nutrients very well. And it is very common for us to be deficient in iron and vitamin D especially. Even once you’re fully gluten-free you might still have problems absorbing these nutrients. I take iron and vitamin D every day and I’m still low on both of these.

7. Don’t cheat.

When I was finally diagnosed with gluten intolerance I was sick and tired of being sick and tired. You couldn’t pay me to eat gluten. I felt too awful when I did. And I had a newborn to take care of, so I couldn’t afford to make myself feel bad on purpose. But, I know many folks who keep cheating. They knowingly eat gluten and make themselves feel bad all over again. Why do this? I don’t get it. I think it ties into #3. But seriously, don’t do it. It really doesn’t help. And you keep doing damage to your body if you do this and then everything doesn’t work well.

Also, if you cheat you will confuse and piss off the people around you.  People want to help, so if they go to the trouble of making something gluten-free for you and then they see you eating gluten, it’s annoying.  It also makes people like me crazy because I have to explain to everyone why I can’t cheat and why you do.  It’s tiring.

8. Read labels–even in things you think can’t possibly have gluten.  Gluten hides in some weird places.  Here are some of them.

-pre-shredded cheese (they usually include a starch as an anti-caking ingredient. Make sure the starch isn’t gluten-containing.  This is why many of us who are gluten intolerant react at Mexican restaurants–many of them use pre-shredded cheese.

-sour cream.  Sometimes gluten is added to make it creamier

-beer: most beer contains barley or wheat.  And beer is fermented, not distilled, so the gluten stays in it.  There are a few gluten-free brands (see below).

-hard cider.  Read labels to make sure you know what ones are gluten-free.

-soy sauce.  Soy sauce contains wheat.  I just does.  There are a couple of brands of gluten-free soy sauce or tamari on the market–look for them (see below).

-TVP (textured Vegetable Protein)

-regular panko bread crumbs: these are made from wheat.  Some people seem to think they are gluten-free–they’re not.

9. I know I told you do avoid processed foods but there are a few commercially available foods that we buy that might help make life a bit easier for you while you adjust (and beyond).

a) Tinkyada pasta. This is my favorite gluten-free pasta. It’s made with brown rice and water. That’s it. It comes in a variety of shapes.  I recommend boiling it for 13 minutes (no longer) and then toss/rinsing it for AT LEAST 2 minutes under HOT water (to wash off the rice starch). Then toss with sauce or olive oil.
b) San-J Gluten-Free Tamari. We use this in place of soy sauce (which has gluten). This also comes in travel packets, which are very helpful when you visit friends or restaurants. Please note that not all tamaris are gluten-free. Please read labels.
c) Pamela’s Gluten-Free Bread mix. This is the best commercially available bread mix on the market and it’s easy to make. Just get yourself a 9 in x 5 in by 3 in loaf pan and start baking.
d) Canyon Bakehouse Bread.  This is our favorite gluten-free bread.
3) Glutino Chocolate Creme Cookies (like Oreos). There are many of this type of gf cookie on the market, but we like these best for a once-in-awhile treat.
f) Glutino GF Pretzels. These come in sticks and twists. We like these for snacks.
g) Red Bridge or Bard’s Tale Beer.  I don’t drink beer, but I do use it in cooking.  These are two of the most commonly available gluten-free beers.  Check out this article on Bon Appetit for more brands to try.

And don’t despair! It gets easier, I promise!

Updated: 10/22/13

What other words of advice do you have for folks who are dealing with a new gluten-intolerance diagnosis?

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